Monday, March 19, 2007

Guilt

A physician acquaintance was telling me about an episode that happened more than ten years ago. He was providing the OB care for a pregnant physician friend. At one checkup his friend had mildly elevated blood pressure. They debated whether to work it up further but it was mild and transient, so they decided to just have her come back in one week. To make a long story short, his friend showed up six days later with a dead fetus.

Needless to say, my acquaintance felt terrible. You would feel bad about that even if your patient were a stranger, but to have it happen with a friend magnifies the feeling. His feeling of guilt persisted even after quality assurance reviews found no fault with his actions, and even now, more than a decade later, it was hard for him to talk about. I couldn't help but think, though, that even though the physician's pain was great. the mother's must have been much worse. She not only had the pain of the loss of her child, but she too must have had a fair amount of guilt.

I am told, and have at times observed it myself, that mothers of babies with problems have a lot of guilt, often without rational basis. I can imagine them thinking to themselves, did I wipe myself wrong, causing a bladder infection that set off preterm labor? Did my water break at 26 weeks gestation because I had sex last night? Did I come to the hospital soon enough? Should I have used a different obstetrician? Even though the mother may know in her head that a premature birth, for example, was not her fault, she can still have trouble shaking that guilty feeling.

Like all doctors, I have made some mistakes. When I do, I usually determine to learn from it, or rationalize it, or use some other internal defense mechanism to soothe myself. Time, too, has a way of lessening your guilt. But if a mother feels guilty about causing preterm labor and has a child who is an NICU graduate with deficits, is that a constant reminder of her thoughts of guilt? Or does the rational side of her, the one that knows in her head that the prematurity was not her fault, eventually prevail? Does the joy of her child drown out those guilty feelings? If a child is more severely impaired, are the guilty feelings worse? Do they last longer?

I'm not sure what the natural history of guilt is, and I'm hoping that I don't have so much that I find out. I wonder if it has stages, like Kubler-Ross's five stages of grieving. I think we just have to remain aware of it in mothers' lives, because they don't seem to talk about it much, at least not with me. Maybe it's easier for them to discuss it with the nurses, who are in general less intimidating and almost always female.


P.S. It seems that somewhere in this post there should be a phrase about a Catholic upbringing or Jewish mother, but I just couldn't figure out where to fit it in.

109 Comments:

Anonymous Anonymous said...

I am the adoptive mom of 2 former premie brothers (23 and 26 weeks). Last summer, they were also diagnosed with fetal alcohol syndrome. I tried to imagine attending the FAS clinic as a birth mother and couldn't even begin to. I did see a few moms who were apparently the natural mothers of those being "worked up" and they all wore a look of anguish (justifiably).
Even as an adoptive mom, I have felt surges of guilt at not noticing some difficulties with my premies relating to sensory processing, social delays, etc.
I think that "mom" and "guilt" are irrevocably linked.

3:03 PM  
Anonymous Anonymous said...

I had my son at 31 weeks. My water broke for some reason I do not know. He is almost 3 and has no problems (but was in NICU for 29 days) and I cry sometimes when I think of him not being born in peace. Having IV's and monitors and little one on one contact. I try to think of what I could have done different, and even though in my head I know there is nothing, in my heart I still wonder and feel very responsible. I just wonder if that feeling ever goes away?????

3:37 PM  
Anonymous Anonymous said...

ND, are you having guilt about your 'Sick' blog? Where did it go?

3:54 PM  
Blogger Emily said...

I could totally relate to your post, ND. I did everything I was supposed to during my pregnancy. I camped out at my OBs office not willing to accept the on call nurse's diagnosis of a stomach virus (I had HELLP). I lay on my side in a hospital bed on mag with no visitors, phone calls, etc. that might get me excited/raise my BP long enough to get my steroid shots and when at 2 am a few days later they insisted they needed to deliver I said through my intense pain "Can we try to wait a few more days?". Yet somehow I still manage to feel like I should've done more. I know it's not really my fault and the feelings of guilt have decreased over time, but I don't know if they'll ever go completely away.

4:35 PM  
Anonymous Anonymous said...

My twins were born at 31 weeks, on the dot. I had an abrupted placenta. I went into the hospital two days before Christmas with some preterm labor and some bleeding, nothing severe. An ultrasound determined that I had an abrupted placenta. It didn't look like a particularly serious abruption, although they were afraid that their might be an area of abruption that couldn't be seen on the ultrasound, and they were able to stop my labor merely by hydrating me. They gave me steroid shots for the babies' lungs just in case, and planned to send me home Christmas morning after I'd had the full course. I had a 2.5 year old son at home, and I was so sad to think of missing Christmas with him. But I didn't feel quite "right" Christmas morning. Hard to describe, but I just didn't feel stable. I assumed my OB would keep me in when I told her how I was feeling. She was also the mother of young twins. She really wanted to get me home to my son. I didn't push very hard on the fact that I didn't feel quite right, and she brushed it aside. I think we were both somewhat influenced by the fact that it was Christmas day. I went home, spent that day and night at home, and probably moved around more than I should, and the next day started bleeding and contracting again. I ended up in the hospital on magnesium sulfate, 100% bedrest.

The bleeding and contractions stopped for the most part after the mag, and my OB seemed to think I may even make it home again. I started bleeding again. But mostly just spotting, which no one was worried about. Then I passed a pretty big clot, which I saved, and which was then apparently inspected by everyone under the sun. I started contracting again. My OB I think would have leaned toward trying to stop labor, and keep the babies in longer. The babies were looking great, and were never in the slightest distress. The senior resident peri was really pushing for delivery, though, had been pusing for delivery from the day I arrived. I didn't resist, although I could sense my OB's reluctance. I had a c-section, so they were able to really examine my placenta. It turns out that the abruption was not really that bad at all, and we could probably have kept them in longer. My girls are over 3 now, and seem absolutely fine. One daughter had strabismus and had to have corrective eye surgery, which may have been related to her prematurity, but my husband also had the same surgery when he was a child, so who knows. But I still feel guilty, and worry that they will not be as smart or successful as they would have been had they been delivered later.

I feel guilty that I went home Christmas morning, and think that if I had pushed my OB harder on not feeling "right" she might have kept me there. I feel guilty that I moved around so much once I was home. And I feel guilty that I didn't question the decision to deliver the girls. I even felt bad that I made an issue of the blood clot, which led to the decision to deliver.

All of this is probably irrational. Would my doctor have kept me in the hospital because of a "feeling?" I was not told to stay on strict bedrest, and I didn't exactly go out dancing once I was home. And the consequences if the abruption really was bad versus delivery at 31 weeks was probably the right call. But I probably feel most guilty though because I was miserable throughout the entire pregnancy, both mentally and physically, and could not WAIT for it to be over. And I was so happy that they were out, even though they were 9 weeks early. So I felt bad feeling that way.

Mothers feel guilty about everything. It is our job.

4:51 PM  
Anonymous Anonymous said...

Guilt is a strange thing when it comes to children. When there is something wrong with a new baby, the mother of course feels guilty. It however, doesn't stop there (unfortunately). Your child's whole life you will feel guilty for the things that happen to them and even the things they do. I am a mother of a 6 year old boy. He was a great baby....born 4 weeks early and turned out just fine. However, his teachers are starting to notice things. He isn't hyper and he is extremely smart (reading and writing at the age of 4). He just can't concentrate on anything...and I mean anything. I feel guilt so much because I don't know if its something I did or not (either while I was pregnant or after). I just don't know. Anyway, watching my own mother with my brothers and I....I know the guilt lasts forever. My mom was a great mom....and yet one of my brother's screwed his life up big time and as a result he is no longer with us. For years after his death, she would say "Did I do something wrong?" or stuff like "Was I a bad mother?" Of course the answer was no. Things happen sometimes. My brother made his own decisions that lead him to where he is, mom didn't do it. I know ND that you are talking about tiny innocent babies....but guilt never seems to stop when it comes to a mother's love for her children....cause no matter what happens...a mom will always second guess herself (even when you want to smack your teenager on the back of the head and ask them "what in the hell they were thinking"). I can't imagine being a doctor and having other people's lives in my hands too....my children are enough. Kudos to you doc.

4:59 PM  
Anonymous Liza said...

I have three special-needs kids (different special needs though--I swear I didn't have two wonky ones and then decide to have a third; masochism is not one of my issues, honest), two of whom were preterm. Their special needs are supposedly not related that that, and indeed various family members have various components of them, independent of any prematurity. The third, and sickest, child was fullterm. I started to comment and say that the guilt goes away, that you move past it as the child grows and focus on the present. But then I remembered that we are currently being worked up by a geneticist, who suspects that we have a syndrome that, among other things, causes PROM as a result of the fetus's (and therefore the placenta's) faulty genes. And a good five and a half years after my oldest was born too soon, I heard that and was practically ecstatic, because even though I know I took every possible care to safeguard my pregnancies, and had close and exceedingly competent monitoring all three times, I think I was still feeling guilty. Hearing that it was probably something genetic that I had no control over and that could not have been prevented no matter who was caring for me at the time was very freeing. For the record, I AM of Jewish descent (speaking of guilt, not genetic syndromes), but I think maternal guilt is a universal language of sorts, and is an important protective mechanism from an evolutionary survival standpoint, albeit probably an outdated and now mostly-useless one that, like wisdom teeth or the appendix, does more harm than good in modern times.

5:06 PM  
Blogger Katie said...

I am a mother of a 24.6 weeker and a 33 weeker. And yes - yes, there is guilt, and a lot of it. Even with my 33 weeker, who just turned three and has very few lasting effects of her prematurity, there is guilt. She has epilepsy (as far as we know, unrelated to her former preemie status) and every time I see her struggle to do something the seizures have taken away from her, or every time she's crying because she hates seeing doctors and getting "poked," I feel guilty. I did everything "right." I know in my head I did not cause her prematurity or her epilepsy...But I'm a mother. I'm supposed to make it all better. And I can't, and there is guilt.

My 24 weeker died after three months in the NICU. Yes, my guilt surrounding him is stronger than with my daughter - the outcome was much worse. Again, I did everything in my pregnancy "right" but I can't help thinking, what if...What if I'd done x, y, or z. What would have given him a better chance at survival?

And inevitably, there is the guilt, in my son's case, over - what if I did too much? What if I asked too much of him, asked him to fight too long, and he suffered too much because of my selfishness? I hope every day I didn't cheat him that way, but I will never know. I think as mothers, we can't accept that there is nothing to blame, no reason for our children's pain. So if there truly is nowhere to lay the blame but on ourselves, however unjustly, that is where the blame goes. It's part of being a mother.

(And I don't have any insight on your Jewish/Catholic comment...But I was raised in the Dutch Calvinist tradition...Wow, guilt! Perhaps you're onto something...)

5:14 PM  
Blogger 23wktwins'mommy said...

Guilt, I'm afraid, is a feeling I don't think will ever escape me. As I have begun posting on these very popular blogs that have similar readers (this one and Preemie Experiment), I won't go into my whole birth experience again. Sum it up: I had zero complications in my pregnancy and I have zero answers for their preterm delievery. I shouldn't feel guilty because I did everything right. Although the very questions about UTIs and sex HAVE entered my mind so many times.
This is what I feel guilty about and probably always will:
-I couldn't stay pregnant, not for 40 weeks and not even enough for it to be a little "safer" for my two...I HAD to deliver at 23 weeks...the very week there is so much controversy about
-I CHOSE to save my 23 weekers, when I could have just let them go
-I WATCHED my children in the NICU in pain at times
-What will the future hold? Now we wait. We wait for news regarding their development. will they see okay? can they hear? will they have cp? will they have brain damage?
I live with guilt everyday and yet I was a very willing participant in the decision to treat my 23 weekers and to continue treatment.
I have my beautiful children to hold and love, and yet I know deep in my heart my guilt will never fade.
Perfect genes...if only I could have stayed pregnant. Why didn't I DEMAND magnesium sulfate? Should I have used a bed pan instead of getting up to go to the bathroom?
I chose this for my children! What if they have severe difficulties in life? What if their dad or I die? Who will take care of them? Will anyone even want to if they have special needs?
In spite of the torment I put myself through day in and day out, I also know my guilt would never fade had I opted NOT to treat and just allowed them to die. To some that would have been the more selfless thing to do, but I know the guilt of not giving them a CHANCE would have stung much worse.
Then I can only imagine how I would obsessively go to the blogs of mom's with 23 week survivers. I'd study their photos, see the smiles, see the progress, see the unconditional love and devotion these parents have for their children REGARDLESS of them not being "perfect." That guilt is a guilt that would drive me into deep depression. I'd think...I chose to let my children die because they probably wouldn't be "perfect." Regardless of those who would argue that is the just thing to do, to spare their child pain and suffering, *I* would end up likening it to people who opt to screen for things like Downs Syndrome, and opt to abort if their child had it. I couldn't live with that guilt either...no way, no how.
***IMPORTANT***: I DO NOT judge people who choose not to treat their micropreemies (in fact some babies are simply not viable and I would have ended treatment for my two under certain circumstances...this is detailed in another comment). I also DO NOT judge people who opt for genetic screening and then make a choice based on results. I am all for parents choosing what is best for their family. Afterall, they are the ones who have to care for that child, and if they know they couldn't care for a child with special needs, I for one wouldn't want them to. This is just how *I* feel, and what I could live with, and what I couldn't.

5:18 PM  
Anonymous Anonymous said...

Guilt never goes away. My mother still feels it, 36+ years later, after my brother was born severely brain damaged (full term, FWIW). No cord compression, no nuchal cord, no cord prolapse, no abruption/previa, no meconium, just a limp blue baby that was probably without O2 for 4-6 minutes. Too short to kill him, too long to let him live without serious impairment.
She was never given a reason, so she makes them up. She smoked. She had a glass of wine. She picked up her toddler too many times. In her mind it is her fault.

6:51 PM  
Anonymous Anonymous said...

Does the guilt go away, lessen? No. But I'm not sure that "guilt" is the right word - I think it is something much more complex. As lots of commentators have said, all mothers feel guilty. I sometimes think it comes in with your milk, regardless of the circumstances of birth. The guilt that comes with a damaged child is much more akin to a deep sense of failure. It's generally 100% irrational, and co-exists with the more rational understanding that it was not your fault, what happened happened and that the bond of love is strong enough to deal with it.

7:16 PM  
Anonymous lori said...

I saw a counselor while my son (former 28 weeker, now 18 months) was in the NICU to help me cope with my emotions. As we waded through them all, she talked with me about how guilt is your mind's way of bringing a feeling of control into a situation you couldn't control. This really helped me get a better grip on my guilt. It doesn't mean I still don't feel it from time to time, but I better understand why I have it.

7:24 PM  
Blogger The Preemie Experiment said...

I no longer allow guilt in my life. It was my friend for waaay too long. And, a horrible friend it was.

When my water broke, at 23.0 weeks, I was admitted. There I laid, on my back, missing my doggies at home. My doggies! Day after day I cried for my doggies! What a brat I was! Broken bag, no labor and hubby with me 24 hours a day.

One day hubby decided to go home and do some laundry. My mother in law had been taking care of our dogs. Hubby thought he would spend some time with them. (I'm sure the thought of getting a break from his lunatic wife was appealing too-lol). He called me from home to tell me that one of our dogs, Snafu, was looking sad and he was going to stay at home for the night to be with him. (warning-brat resurfacing) I threw a fit. A royal fit!

Hubby came back to the hospital (90 minutes away) so I would calm down (I'm sure he was nervous as this was not my nature-to be demanding and bratty-it really isn't-I see you all rolling your eye-lol).

The next day I was still upset and feeling claustrophobic from being in the hospital room for 2 1/2 weeks. I begged my OB to let my husband push me around outside. OB agreed and out we went.

After coming in my OB came in to check on me. I told him that I was starting to freak out and couldn't handle being in here one more minute. He decided to draw some blood since I was not acting like myself.

Blood came back, white blood count was off the charts. Emergency amnio-fluid was black and green. Paige was born 20 minutes later.

Snafu died the next day of liver failure from his pain meds.

What if I had let hubby stay with him-he would have figured out something was wrong. What if I hadn't gone outside? What if I hadn't freaked out?

The what if's are endless. The guilt was too.

8:12 PM  
Blogger Jacqui said...

Can't speak for anyone else but with me, the guilt disappeared with acceptance.

9:33 PM  
Anonymous C & V said...

Control . . . and what-ifs, yes.

We think we have control much more than we really do. We are trained to take control and to be assertive. To make clean decisions. To be firm. Set limits. Etc.

But then we come up against something like prematurity, that is at the core of your life and values, and we see how little control we actually have. It is like the story of Job in the Bible. By being a just man, Job thought goodness would come back to him (as in "What goes around comes around"), and adversity came instead. Why? Why me? (Notice how "Why?" and "Why me?" sound like keening?)

What-ifs are an indulgence, a self-indulgence. They are self-torture. We should treat ourselves better than that. We should be kind to ourselves. Even if we have made clearly identifiable mistakes, we should say "I will pick up the pieces and go on, bravely. I will discipline myself to be brave. I am brave for myself and for my child to see, because my child needs to learn bravery."

Let all the negatory stuff, including guilt, go. Cultivate peace. And bravery.

This is how I talk to myself, and take myself in hand, when I am in my own downward spiral over this or that. I tell myself I could have done better back then, but it is okay because I am doing better now. And now is not too late to be doing better. And after all, I am proud of how I have grown.
Chris and Vic

9:53 PM  
Anonymous Helen Harrison said...

I, for one, don't feel guilty about my son's premature birth. I know I did everything within my power to give him the best possible start in life, and I did so from the minute my husband and I began to think of having children.

I do, however, question the wisdom and culpability of those who think they can turn a damaged fetus, that nature "intended" to be miscarried, into a healthy, normal child.

10:44 PM  
Blogger Dream Mom said...

I wished for many years that I knew what caused Dear Son's disabilities. I felt tremendous relief when they discovered the gene a little over four years ago and he tested positive for the gene. I think it's only natural to wonder what caused it, whether it was the environment or something else. I have always lived a very clean lifestyle so I never had to worry about anything else.

In my case, I had a full term birth and all of my pregnancy tests were totally normal.

While my son may have severe disabilities, I feel very blessed that he not only lived, but that I have physicians who valued his life over the years, as I did.

11:30 PM  
Blogger Lori said...

I don't think I feel "guilt" over the loss of our 23 weekers, but rather "regret." To me, guilt implies some sort of culpability or intentional action on my part. I know that I didn't do anything to intentionally cause them harm. However, I do wish I could go back in time and do any number of things differently.

This definition of "regret" (from brainyquote.com), fits my feelings much better:

Pain of mind on account of something done or experienced in the past, with a wish that it had been different; a looking back with dissatisfaction or with longing; grief; sorrow; especially, a mourning on account of the loss of some joy, advantage, or satisfaction.

12:07 AM  
Anonymous Helen Harrison said...

To Lori:

I think what most of us feel is really "regret" and sorrow, as you have defined it.

And what sane person in our circumstances wouldn't feel this way?

12:22 AM  
Anonymous Kath said...

Born and raised Catholic and now I observe Judaism.

I like to think the guilt got cancelled out along the way, cause I have no guilt whatsoever about anything in my life.

Do the best you can and realize that (sadly) not everything is in your control.

1:42 AM  
Blogger Antigonos said...

Today's culture virtually insists that, if you are a mother, you feel guilty if your children are anything less than absolutely perfect. Ever pick up a woman's magazine? "Are You Doing This, or That?" "Doing This,or That, Can Cause Your Child to Fail/Be At Risk, etc." And it goes on and on. If you don't give your child a certain food advertised as healthy on TV, or buy the right shoes, or trundle him/her to this course or special hobby, well, YOU'RE A BAD MOTHER!
Phooey. My three were born at full term; by C/S (long story but basically I just don't dilate despite good labor) and two of them have learning disabilities--one mildly, the other has classic dyslexia. The mildly affected son, who was also hyperactive, is now a very successful businessman; my two daughters, both the dyslexic one and the "normal" one (who resented being normal and complained that she got less attention than her siblings) are both happy, well-adjusted adults living at full potential. They didn't get everything I "should" have given them because I simply couldn't afford to--I did the best I could, without any guilt about it. And oh yeah, I'm Jewish.

I think guilt results, at least partly, from an inability to realize that one is not able to be entirely in control all the time. This is especially true with parents of premies, who usually don't get a definitive answer about what caused the prematurity. Not knowing means uncertainty. I think there isn't enough expert counseling or support in most cases, and that increases not only the bewilderment but the guilt.

2:20 AM  
Blogger 23wktwins'mommy said...

This is a side note...but what is the benefit of referring to a micropreemie as a:
"damaged fetus, that nature "intended" to be miscarried"?
I agree that without intense medical intervention there is no way that these preemies could survive outside of the womb. I know the definition of a miscarriage refers to the premature end of a pregnancy before the developing baby is able to survive outside the womb. You can argue that before 26 weeks, (the gestational age that you say you would resuscitate), treatment that can keep these babies alive shouldn't be implemented, and therefore it is not natural that they survive outside of the womb. You can most definitely argue that.
However, I'm sure you also know that very many definitions call everything before 20 weeks a miscarriage, and after that it is usually referred to as death. (I am definitely not trying to take anything away from parents who lose a baby before 20 weeks, because that is also a death, and a very painful loss of what most deem as their child.)
It's fine to say nature intended the 21, 22, 23, 24, 25 week baby to die. I can deal with that. But do we really need to reduce people's infants to fetuses?... even if it is a medically adaquate term.
I think it is just an intentional stab at parents who opt to save their micropreemies, and I find it insulting.
You are much more intelligent and have a lot more to back your case than to reduce your point to calling people's children "damaged fetus[es], that nature "intended" to be miscarried."

If your 23 weeker died, would you tell people that you miscarried your fetus?

5:51 AM  
Blogger terri w/2 said...

Ah and then there is the "well-known non-profit oganization" that claims to want to prevent prematurity. .

And their ads about not smoking, drinking, doing drugs, etc etc attached to prematurity. So most everyone thinks that if you've had a preemie you must be a drug addict. .

They are responsible, I believe for a tremendous amount of guilt that mothers in particular, feel.

8:19 AM  
Anonymous Sammy's mom said...

As a member of a large support group for parents of children with a severe brain malformation, I have found that every mother asks the same question . . . "What did I do to cause this?"

It doesn't matter what country they live in, what lanugage they speak, what religion they are, how much money they have, how advanced their education . . . they all ask the same question that comes directly from their hearts . . . "What did I do to cause this?"

8:20 AM  
Blogger stockingup99 said...

I feel guilty that I allowed the sOB to break my water at 37.5 weeks. He said break your water or go home. She has been diagnosed with asthma, and shows lots of fear at breaks in routine, at 8.

For my next, I plan to birth at home. For my second they said break your water, or go home, and I went home and ordered a pizza, after being told that I was 6 cm.

8:27 AM  
Anonymous Long Time Listener said...

I never have felt the slightest twinge of guilt over my son, now 11 years old, been born prematurely weighing around 500 gms.
I had pre-eclampsia. To be frank..crap happens. I didn't do a thing wrong - that's just life.
Since his birth,I am sure that I have made some spectacular errors, but I deal with that as I go along. I work hard to assist him, I keep as up to date as I can with the research, I prepare as much as I can for each meeting, I love him to bits. When I get a bad day, I tell him that I was a rubbish mum that day - he agrees - we sort it out, we move on. No - no guilt.

I'm a Methodist so is that Methodism for you?!

10:18 AM  
Anonymous Emmie (Better Make It A Double) said...

For me, not letting go of the guilt is tied up with not being able to make sense of what happened. My twin boys are 2 this week, and were born at a relatively "safe" exactly 35 weeks. However, I had PTL at 20.5 weeks on, and was on bed rest in and out of the hospital for the rest of the pregnancy. I was also on a ton of meds, including a terb pump and several meds just to manage the effects of the bed rest. I gained 11 pounds total (hyperemesis and constant nausea). I’ve met a doctor since then who questioned the bedrest and use of terbulatine, saying it might now leave my twins more susceptible to cancer. I was on it for months, eventually at the highest doses my body could safely handle. My boys seem fine, very verbal, very bright, great motor skills. What I feel guilty about and worry about is the chemical cocktail they were exposed to in the womb – the stress, the poor nutrition, the drugs. I feel guilty that I wasn’t in a position to research or question my options, and I worry that the effects might not show up for years. I am angry that we still don’t know more about what make PTL tick and how to safely treat it, and that the doctors don’t seem to agree about any of it. I know that isn’t anyone’s fault, including mine, but I’m not sure if the guilt will ever go away.

I realize I’m getting a little off topic, but I actually have a lot of respect for the fact that my docs did the best they could. It must be very hard to make decisions that have such major consequences and have to live with the results, to work so hard and still have a negative outcome a lot of the time, to be vulnerable to lawsuits and misdirected accusations. Due to what I suspect are liability issues (which, again, I am not without sympathy for), I’ve never been able to have a frank conversation with my OB about any of it. I eventually went to another OB for routine care, because seeing her now is just too painful.

Oh, and we did IVF. That part of it, I’ve at least made some sense of in my mind. I wrote about the ethics of choosing IVF and transferring multiple embryos here: http://allthis.typepad.com/allthis/2006/10/the_ivf_post_i_.html I got a ton of responses from women who did or are considering ART, but I would really like to hear a doctor’s perspective on all of this. Your blog is the closest I’ve gotten, and I really appreciate it. It helps me remember that doctors are human, doing the best they can, and wanting ultimately what’s best for their patients under often less than ideal circumstances. Also, we had a very good NICU experience. We had great doctors and nurses, we roomed in with them, round the clock breastfeeding support. We received truly excellent care, and it was very healing for my husband and I after such a scary pregnancy. My apologies for the very long comment.

11:38 AM  
Anonymous Anonymous said...

When I lost my 22 weeker due to cystic hygroma, I also had feelings of guilt, even though my OB told me that there was nothing I did wrong, just something to do with the way the chromosomes lined up at conception.

My husband and I found out that the baby was very sick during a sonogram. We had to return later that day to speak with the high risk OB doctor to explain.

At that second appt, my mother forced her way in to his office. I did not want her there as this should have been a "private moment" between my husband, myself, and our OB gently explaining that this baby will not survive much longer. We were so emotionally drained that we did not tell her to wait outside in the waiting room. Had we asked, she still not would have done so and would have made a scene causing us even more stress.

My mother heard EVERYTHING the OB said, especially that it was not my fault, not anyone's fault....but she still blames me. So, even though I understand in my rational mind that it was not my fault, my mother reminds me and everyone else who will listen that it was my fault.

Julie

12:01 PM  
Anonymous Anonymous said...

Every parent, regardless of pre-term or full, carries guilt. When the end result is a less than "perfect" child - that guilt is doubled, then tripled,and threaten to crush you, but there comes a time when that guilt has to change. It becomes one of two things, regret and acceptance, or blame. If it becomes blame, then it is placed one of three places, either back upon onesself, straight at God, or squarely on the shoulders of the others. In the event of a preemie, the "others" of course, will be the OB's and Neo's. Guilt is hard - blame is crippling. It freezes you in a moment in time that you will never be able to move past.

12:13 PM  
Anonymous Anonymous said...

To 23wk twins:

I couldn't agree with you more. I think there are more thoughtful ways to say this. Helen, I greatly respect what you are doing in fighting for parental informed consent and the right to choose. But in a post about maternal guilt, do you really need to make it all about your crusade, or could you find it in your heart to have some sympathy for us as fellow mothers?

12:13 PM  
Anonymous Helen Harrison said...

To 23wktwins'mommY who said:

"but what is the benefit of referring to a micropreemie as a:
"damaged fetus, that nature "intended" to be miscarried"?"

I wasn't referring to micropreemies here I was referring *only* to my son, born at 29 weeks.

He was gravely ill at birth with listeriosis (early blood gases showed a pH of 6.9). This is not good.

There are natural mechanisms that cause early delivery and death of the fetus/infant when pregnancy goes so horribly wrong. At least that was the way it used to be...

My point is that I think it is medical hubris of the highest order to intervene in this process unless you are reasonably certain that the care is humane,the outcomes good, and the burden to benefit ratio understood and agreed upon by the physicians and the parents.

2:01 PM  
Blogger 23wktwins'mommy said...

Helen who said:

"My point is that I think it is medical hubris of the highest order to intervene in this process unless you are reasonably certain that the care is humane,the outcomes good, and the burden to benefit ratio understood and agreed upon by the physicians and the parents."

I think most of us who have read your compelling evidence and fact-driven data are aware of what your position is. I do not debate in the least that nature intended these pregnancies to end too early and we are using science go against that intention.
I'm disagreeing with your crude reference to an infant, as "a damaged fetus", who was intended to be a "miscarriage." If you were talking about your own son, I really don't have an appropriate response to that.
However, at 29 weeks, the death of your son (had their not been intense medical intervention) would not have been classified as a miscarriage. It would be more accurate to call it fetal death. However, as a parent I would substitute "nature's intended miscarriage" for the DEATH of, not my "damaged fetus", but of MY SON/DAUGHTER.
I guess I just agree with annoymous who says:

"Helen, I greatly respect what you are doing in fighting for parental informed consent and the right to choose. But in a post about maternal guilt, do you really need to make it all about your crusade, or could you find it in your heart to have some sympathy for us as fellow mothers?"

But then again, you say you were referring to your own son, so who I am to judge there?

2:30 PM  
Anonymous Helen Harrison said...

To 23wktwins'mommy:

I have no problem with your choice of words.

But if my son's death can be characterized as "a fetal death," then I am correct in referring to him as a "fetus."

If my son had been born at home with no interventions taken he would have died upon delivery.

In common parlance, that would be called a "miscarriage" or, perhaps, a "stillbirth."

His death would have been tragic, but not nearly as tragic and painful as his life has been. This is the point, again, that I am trying to make.

I certainly intend no disrespect of anyone else's ethical choices or terminology preferences.

2:51 PM  
Blogger Heidi said...

When I began miscarrying at 10 weeks (detaching placenta, subchorionic hemorrhage) I asked our medical team if this was due to me (as opposed to genetic issues or abnormalities with the baby) - I had already miscarried twice, we knew I had low progesterone and we were treating it, I had low weight to begin with and lost weight due to morning sickness... was it my fault I was miscarrying again? Our midwife, OB & peris all assured me it was not my fault. Yet during prenatal consults for our next pregnancy, those factors were all discussed - I needed to try and get my weight up, we would start progesterone even earlier, etc.

So if it was too late to do change anything, they didn't want me to feel guilty. But if we were discussing issues affecting a future pregnancy, you bet they wanted to make sure we did all we could to avoid a repeat. Not that I could magically increase my progesterone, but what if we had treated it earlier? What if we had been more aggressive with something... or less aggressive? So many variables, no way to know.

Did "nature" intend for my son to be miscarried? Clearly, my body did its best over the 12 weeks of bleeding and contractions to kick that boy out. He stubbornly stayed in there until literally the first day the NICU said he had a chance - and then I began dilating and went into "labor" (because until viability, I guess I was just miscarrying?) Did we decide to let him die peacefully? Are you kidding? After the fight that kid put up to survive all those weeks?? We gave him a chance and he ran with it... now he's quite literally running, and we're constantly racing to keep up with him.

Do I feel regret about his early arrival? Do I wish I could have spared him the months of pain? Did I anguish over the toll it took on my older two kids? Of course, but I do not for a moment regret that we chose to give him a chance - and it was our choice. Not for one second have I questioned that we made the right choice. But I'm one of those annoying parents that thinks their 23 weeker is a miracle. :)

3:01 PM  
Anonymous Anonymous said...

Heidi,

Go right on ahead and be annoying and cheerful, lol. The world needs the miracles, too. Their very existence is fact that cannot be denied. Their lives deserve to be factored into this debate, just as much as the gathered data on the less successful outcomes. Education on prematurity - a TRUE education, should examine all sides of the issue.

3:29 PM  
Blogger Nancy said...

I felt guilty for caitlyn's prematurity for all of about 5.4 seconds. Well, when I finally came out of the drug indiced fog and realized I had delivered an 18 ounce baby that is. But I knew in my heart there was nothing that I did to cause her early arrival or the onset of HELLP.

However, I do question on a regular basis what caused the HELLP. And darn that cause to hell! It's that conditions reason that my child had to go through what she went through for 106 days in the NICU. It's HELLPs fault that I never got to wear maternity clothes. It's HELLPs fault that my daughter had to fight tooth and nail for her life (sometimes I think she was fighting for mine as well; no telling what I would have done had she not lived!)

So guilt? Not so much. Frustration over not knowing why and how to prevent it again, absolutely!

I think it depends on what kind of person you are really. I don't feel guilt over many things in life, if any. Things happen, most of which are out of my control. I'm a "go with the flow" kind of girl, if you will. Some people are more emotional, others more logical. Is either one better off? No. But they approach situations in a way that is fitting for them. A way that "gets them through the day." And I think that whatever people need to do, whatever coping mechanisms they have in them to deal with the situation at hand is what works.

3:47 PM  
Anonymous Helen Harrison said...

To anonymous who said:

"Education on prematurity - a TRUE education, should examine all sides of the issue."

It certainly should, and I would like to hear more from Heidi about her 23 weeker. How old is he now? How is he doing?

3:54 PM  
Blogger Nancy said...

"It certainly should, and I would like to hear more from Heidi about her 23 weeker. How old is he now? How is he doing?"

Why is it that the conversation always has to come back to this? It's a post about feeling guilty, can't it just remain that or does it always need to be a debate?

4:11 PM  
Anonymous Helen Harrison said...

To Nancy,

I for one would like to bring this back to "guilt."

(But I'd still like to hear more about the 23 week miracle baby.)

I think most mothers (and fathers) who go through a premature delivery (or most people in any disastrous, life-altering situation) want to know: "why?" This is not unusual and, in my opinion, not unreasonable. We want to understand all we can about such a situation in order to make the best of it and to make sure it doesn't happen again.

This search for answers along with the normal pain one feels in these situations is not really the same, to me, at least, as "guilt."

Perhaps I was "fortunate" to have had an immediate diagnosis (through a cord blood culture) that told me "why"my son was born prematurely. It was listeria, a food-borne organism.

Being curious, and not wanting to have it happen again, I did a grat deal of research on listeria (in 1975 the articles were mostly in Eastern European veterinary journals)and knowing more about listeria -- and about other aspects of prematurity, including the politics and ethics of the NICU - helped me put my situation in perspective.

It helped me feel more at peace with what had happened.

I can only imagine what I might have felt like if there was no diagnosed cause. It would have been much more difficult to confront a phantom.

Two other interventions helped me regain equilibrium after Ed's birth.

The first was physical exercise. After running a few miles or jumping rope for 20-30 minutes a day I just didn't have the adrenalin left to worry much about the unknowns (or the knowns) of Edward's birth and current condition.

Also peer support helped immensely. I really liked the other parents I met and we all, on meeting and getting to know one other, realized we had not somehow each been singled out by some malevolent fate.

I think the discussions on this blog, however uncomfortable and even off topic they may seem at times, are serving a similar purpose.

5:09 PM  
Anonymous lori said...

Nancy,

I feel for you. When I read your feelings about HELLP it brought so much back. I got HELLP with my 28 weeker. He was IUGR at only 1.5 lbs. We found out during my admission to the hospital for PIH at 26 weeks that I had an undiagnosed clotting disorder. The perinatologist was stunned that I had not miscarried and had carried my son to viability. He immediately started me on heparin, oxygen, lots of protein and BP meds. I made it two weeks until HELLP set in. The peri is almost certain the HELLP is a result of the clotting issue I have. I had lots of little voices of guilt creep in. One of the big ones that haunted me for some time was "Why did you continue to work out so hard?" My OB said it was OK. I was a part time fitness instructor in the shape of a trained athlete. She told me it was OK to continue as long as I watched my heart rate and made modifications in the 2nd and 3rd trimesters. But the little voice of guilt asked me about what additional nutrients I was robbing from my son through the workouts as he was already struggling to get what he needed.

Oh how I wish I had known about my clotting factor. I most likely would have delivered close to term and would be experiencing "normal" maternal guilt. Not this kind that creeps back in even as your child is doing well. Every time I worry my DS is having a problem, the guilt comes back. Then as soon as I have a worry, he seems to dispel it by performing the very milestone I am worrying about.

Anyway, your post hit home for me. Did you have clotting testing done after your HELLP pregnancy? I guess clotting issues are notorious for causing HELLP.

Lori

5:22 PM  
Anonymous Rae said...

First time poster but avid reader

I completely agree with Stephanie (23wktwinmom)'s post

Helen, I believe an apology is in order.

You are incorrect. The death of a 29 week gestation baby (or fetus) is not considered a miscarriage. Miscarriages are defined as fetal loss below 20 weeks. They are not reported in state statistics here in Australia. The death of a 29 weeker would be a perinatal death or a still birth, it would be entered in the statistics with a cause of death and a death certificate would be required to be issued. This is not a miscarriage.

Yes. Scientifically a baby is a fetus until it is born. If a baby is delivered blue we generally call it a blue baby not a blue fetus. I have never heard a baby referred to as a non-breathing fetus.

Most doctors exhibit care in their choice of language. It is a shame that you appear not to.

Your choice of language is emotive in the extreme, disrespectful and discredits you.

You originally wrote:
"I do, however, question the wisdom and culpability of those who think they can turn a damaged fetus, that nature "intended" to be miscarried, into a healthy, normal child."

and in defending yourself you write

"I wasn't referring to micropreemies here I was referring *only* to my son, born at 29 weeks."

However this is far from clear. If you were referring only to your son you should have written

"I do, however, question the wisdom and culpability of those who THOUGHT they COULD turn a damaged fetus, that nature "intended" to be miscarried, into a healthy, normal child."

Your use of the present tense in respect of doctors who made a call 31 years ago was misleading.

Anonymous' question re the appropriateness of your choice of language on a post regarding guilt and mothers is spot on. You are completely out of line and I believe the most honourable thing you can do at this point is to apologise for your insensitive choice of words.

5:24 PM  
Blogger Shannon said...

I have to say that I have no guilt about my son being born at 24 weeks. I agree with Jacqui that the guilt can go away when you have acceptance.

Helen, I cannot believe the way that you talk about your son! That his life is miserable....life is what you make of it!

My son is disabled yet he is the happiest boy I have ever seen!! I treat him how I would any other child and the fact that he is disabled doesn't make me "wish" that I had of not chose to save him.

I don't know how a mom can feel guilty about having a premature baby. Unless of course she drank or smoked like a chimney....I hate to say this (I know I will get blasted for this) but I think a lot of moms thst display their guilt openly and worry about this and that and everything in between just want attention.

5:30 PM  
Blogger Shannon said...

One more thing...

Helen said:
"I do, however, question the wisdom and culpability of those who think they can turn a damaged fetus, that nature "intended" to be miscarried, into a healthy, normal child."

So are you saying that ALL preemies that are born with a disablility were really MEANT to be miscarried? I didn't realize that ALL babies should be healthy and "normal"...whatever that means anyways

5:33 PM  
Blogger Heidi said...

Helen, last summer you were kind enough to email me several studies about preemie outcomes. I was able to print them off and sit down with Bennett's doctor to discuss specifics of his treatment and possible long term effects (though this was when he was 18 months.) It was an enormous help, thank you! You told me you spoke at our son's NICU years prior and I believe you are in part to credit for the care he received. Having the studies you sent gave me some idea of what to ask about and we continue to be impressed with our NICU - they provided excellent care and I believe you helped influence that.

Bennett is 25 months and for how he's doing - his vision is terrible but with glasses, his acuity is the higher end of average for his adjusted age. Despite having an overly paranoid mother, he seems to have no other effects of his prematurity. He does have an impressive PDA scar - my sisters say it's a shark bite he picked up surfing. The learning & mental health issues are a wait and see, but with a family history of both we know our term kids face those challenges, too. We posted a 2 year update on our blog with more specifics about Ben's development. Here's a link.

Again, thank you for your efforts - I know our family has benefited from your work.

6:36 PM  
Anonymous Anonymous said...

I have to agree with Shannon-I really can't begin to understand why a mother (Helen)would talk like that about her son. The personal crusade gets a little tiring day after day. Maybe it's time to start your own blog where you can attract those people that share your same passion.

That being said, there is something to be said about living your life with grace.

7:02 PM  
Anonymous Helen Harrison said...

To Rae and Shannon:

Nope, no apology. This is how I see it.

"Miscarriage" is a term I, and other mothers of preemies have used advisedly to describe delivery of our very immature and nearly dead fetuses who were then revived by doctors. Terms like "fetal loss" and "fetal salvage" would also be fine with me.

My son was born with blood gases "incompatible with life" as his pediatrician phrased it. He was essentially dead, and almost certainly damaged, at birth.

He had been exposed to cytokines and bacteria in utero which *do* damage the fetus.

Sixty to 80% of other babies born before 30 weeks have also been exposed to cytokines and bacteria from histological chorioamnionitis. Signs of these infections are now detectable at about 16 weeks in pregnancies "destined" to end prematurely.

Many doctors now question the wisdom of trying to prolong these pregnancies with tocolytics, because it simply further immerses the baby in a damaging "cytokine soup."

Neonatologists did, and still apparently do, think they can make these exposed fetal/infants or babies into normal children. At least that is what they seem to be telling the parents.

As for the "intent" of nature, I don't want to anthropomorphize it, which is why I put the word "intent" in quotes.

However, throughout history, infants born in the condition of my son (or most other very preterm infants) would die quickly (and, some would say, mercifully) at birth.

To Shannon who said:

"Helen, I cannot believe the way that you talk about your son! That his life is miserable....life is what you make of it!"

I try to tell the truth as I see it. However, I have never said that my son's life is "miserable." Some days are good, others aren't. We do the best we can.

And I'd like to have you come tell my son: "life is what you make it" when he is in agony from shunt failure or in the hospital. I'm sure this will help him put a whole new perspective on his pain.

7:06 PM  
Blogger Nancy said...

Helen,
I completely agree with you that having a dx makes acceptance so much easier. However, even with HELLP, having the dx but not knowing the cure is what has bothered me. Pretty much for the last almost 6 years since Caitlyn was born. At one point, I kid you not, I even considered that I developed the condition because I played the music in my car too loud causing my blood pressure to rise, beginning the disastrous sequence of events. How scary is that LOL!!

Unfortunately I did not have much of a support group as every woman in my family is capable of being a full term baby making machine. With the exception of me. So I hunted and hunted for info, actually purchasing your books as one of my first resources on prematurity. Looking back now, had I the energy or strength I probably would have started a support group as the number of women I have encountered since then who have experiences HELLP has multiplied. At the time, I had never known anyone who had the condition, just me, and personally I skipped over that pre e part in my pregnancy book. Because "that wasn't going to happen to me!" So I can see how having a fantastic support system in place can make a world of difference.

I also understand that a blog like this often causes discussions on sensitive topics. Typically I thrive on that. However, bad day today and it hit a nerve with me. So if I seemed snarky with you, my apologies.

Lori,
Sorry to have stirred the emotions in you, I hate when people do it to me sometimes to ;) To oanswer your questions, I have been pregnant twice since my case with Caitlyn. The first ended in an early miscarriage at 6 weeks, so I hadn't even seen the doctor yet. The second, I was being closely watched by my doc, however, I developed shingles (aka the devil) at 8 weeks, and miscarried 3 weeks later. Not sure if it was the shingles or the antiviral medications. Either or, I haven't had any clotting tests run. I've never had an issue with my blood pressure or any after effects of the HELLP that we have found. I am almost certain that if I were to delve further into the clotting issue, that we would discover something there. But my husband and I are seriously considering permanent birth control at this method as we don't think that we can face another botched plan.

Maybe not going for further testing is foolish of me, but that old addage of "ignorance s bliss" is not too far from the truth for me.

7:15 PM  
Anonymous Anonymous said...

Although I think that guilt, remorse and regret accompany any tragic event in our lives that leave it in a permanently changed state - I would like to bring the conversation around to the point I understood that generated this entry in your blog - that you had a collegue whose adverse outcome with a patient he had personal knowledge/friendship with lingered with him and changed his perspective on his discipline. I think this more than anything else explains and highlights why parents of preemies often become such blisteringly honest advocates for education, illumination, choice and support for future preemie parents - it's the footprint of the shattering experience. As a rather unimportant example - my refusal of tocalysis with my daughter Katie was partially attributable to the pricey and priceless advice I received from the Perinatologist brought in on my case by my OB - I live in Los Angeles, and so my MD was actually one that you may have seen interviewed from time to time on reproductive issues for national news programs, the Peri is extremely well know through out the country ... the MD's sent me to him because I was being "difficult" and requiring waaay to much in the way of data, information and facts regarding the complications I was having - they fully expected this man to put the fear of G*d in me and send me to a compliant bed resting and hopefully silent state. But a funny thing happened on the way :-) after a very, very detailed history and exam, he sat down across the desk from me and said ... "ok, why you're here is because your doctor wants you to do X - and he wanted a jack booted thug to scare you - and normally this is the fun-est part of my job" ... but here's the deal, one of the first patients I ever had, had a gestation that looked *exactly* like yours, even your numbers are nearly identical - I couldn't find *any* logical reason for that pregnancy to be in jeopardy so I gave that woman the party line = any days or hours you can maintain your gestation is definitely better for the baby ... and a few days later, I saw her for a follow-up and there were no heart tones for the fetus. So, despite what everyone wants me to do, and maybe even what YOU want me to do, I cannot tell you to blindly follow my instructions. You have to make this decision on your own - follow your instincts.

My daughter Kate was born 2 days later (I left his office and continued my normal job, life etc) on the way to Childbirth class, I suddenly and unexpectedly started to bleed. I'll never know if my instincts helped or hurt my daughter. I don't actually feel any real guilt after all these years, though I did feel a certain degree of all those negative emotions (guilt, remorse, rage, fear, anger, sadness) when she was being intubated, and chest tubed, and central lined etc..etc.. without significant (or any) pain control... but after 17 years that sort of stuff fades. Maybe I don't feel guilt because my Peri was sort of like the scape Goat of ancient Israel - he took whatever guilt I might have felt upon himself by revealing that HIS guilt prevented him from implying that ANYONE really knows what to do in these circumstances. He really underscored for me the frailty of medical science. He's a BMOC at the hospital in Beverly Hills where Kate was born and so I ran into him while she was in the NICU - he was concerned about her and me - one of the really good guys... and he was MOST concerned that I not take on guilt that wasn't mine. I wondered how he could be so tuned in - but in retrospect, it was clearly because he'd been living that guilt nightmare for 10 years.

Sheila Brown
Los Angeles, CA

7:17 PM  
Anonymous Anonymous said...

Helen:

I can understand how years of being a "lone crusader" can make you hardened to the emotions of others. But seriously...the old adage that perception is reality holds true here. I have often seen you openly ask for an apology on this and other blogs. If many of us perceive what you are saying as rude, insensitive, and worthy of an apology, then it is. Even if you don't see it that way, feelings have still been hurt and you should be sorry for that at the very least.

7:24 PM  
Anonymous Anonymous said...

the old adage that perception is reality holds true here. I have often seen you openly ask for an apology on this and other blogs. If many of us perceive what you are saying as rude, insensitive, and worthy of an apology, then it is.

Sorry to disagree here, but perception is not reality - in any way shape or form. Just because a group of people believe something, does not make it true, or fact. White supremacists believe all non-white races to be biologically inferior. Nazi's believed the same about Jews. 17th century Europeans believed the world was flat. I think going on beyond this point would simply be rude. Mature, mentally healthy adults need to be responsible for their own feelings - it is not the responsibility of others to make sure that every thought they have is acceptable to others before sharing it. We are responsible for keeping our dialog free from insult, vulgar or profane language or personal attack - but other than that - the impact the message has is not the fault of the sender, but rather of the listener. I've never understood the mindset that would silence an opinion because of idealogical difference. If I disagree with someone, I believe the onus is mine to avoid them. I treasure nothing more than freedom of thought and speech - and someone else's freedom is the best insurance policy that mine will also remain free.

Respectfully,
Sheila Brown
Los Angeles, CA

7:36 PM  
Anonymous Anonymous said...

We came by to check out your site after reading the Washingtonpost.com reprint of the detroit free press article on the ethics of medical blogging. While we feel that the article poorly represented medical blogging and physicians in general, we feel that your blog in particular was criticized unfairly. As physicians we are aware that patients are often discussed in generalities to give ourselves chances as humans to vent about our anguishes, our joys, our confusions, and yes - sometimes our prejudices. We also know that we have sworn a vow to do no harm and to protect our patients' sacred trust. Without having read everyword of your blog, we feel that you have written nothing outside of our professions ancient ethics and furthermore, have only followed in the literary tradition of many physicians. While the famous ones are known for their literature, we know as you, that they wrote for their hearts, to heal themselves so they could go back into the fray, and to share some of the absurdity and joy of the human condition. Be proud of yourself. We support you and other medical bloggers. Does legal fear have to erode even our care of anonymous or fictionalized patients? Even worse, will a backlash against medical blogging frighten the next William Carlos Williams or Anton Chekhov into silence? - an east coast primary care physician and ob/gyn.

7:40 PM  
Anonymous Anonymous said...

Sheila, I respect that viewpoint and normally agree. I believe some of the mothers commenting here would actually characterize this quote from Helen as insulting and vulgar when referencing their child.

"I do, however, question the wisdom and culpability of those who think they can turn a damaged fetus, that nature "intended" to be miscarried, into a healthy, normal child."

I agree with the general spirit of your statement. In this particular case, I think it could be said that it would be easy for the mother of a surviving micropreemie to view this statement by Helen as vulgar and insulting.

I admire Helen's activism...truly. I simply think there are times she could be more sensitive to the mothers of micropreemies.

7:49 PM  
Anonymous Anonymous said...

I believe some of the mothers commenting here would actually characterize this quote from Helen as insulting and vulgar when referencing their child.

"I do, however, question the wisdom and culpability of those who think they can turn a damaged fetus, that nature "intended" to be miscarried, into a healthy, normal child."


I'm unclear on why any mother would internalize this general and biologically truthful statement to be being specifically and personally about their child. If Helen had said "Janey Blogreader, your lingering abortion of a child is revolting and an abomination of nature" then yes, that would be personal, vulgar and insulting - however, in the example you gave, Helen made the observation that prematurely born children are not biologically viable, and only survive through the direct intervention of medical science, and accordingly, with action comes culpability, responsibility and liability. It seems about as in truthful, benign and general as they come.

Best,
Sheila Brown
Los Angeles, CA

8:14 PM  
Anonymous Helen Harrison said...

To Anonymous who said about me:
"I simply think there are times she could be more sensitive to the mothers of micropreemies."

I came to this blog to correct what several experienced mothers of micropreemie felt were erroneous implications (by this blog's authors and commentors) that preemies who were not diagnosed as severely handicapped by age 2 were either normal or only had "learning disabilities."

My evidenced-based and neutrally phrased responses elicited howls of offended sensibility from new mothers of micropreemies and a few neonatologists.

Should I, then, have remained silent? Or should I have reassured these parents that everything is fine with preemies and NICU care?

To do anything less would have insulted *someone's* sensibilities.

My latest comment was heart-felt, personal and about my son and others like him. If some new mothers of micropreemies choose to take offense at it, I suggest they are overly sensitive and perhaps really angry about the information I have been offering about outcomes.

I further suggest that if they really are this sensitive, they should simply stop reading my posts.

Also, I don't recall ever asking anyone to apologize to me on any of the other blogs, although I have asked that they quote me correctly and take down statements about me that are demonstrably untrue.

Now, please, let's all get back to some substantive discussions.

8:33 PM  
Blogger 23wktwins'mommy said...

I for one, do not need, nor particularly want, Helen to apologize. I'm adding my two cents because I was the one who initally addressed her comments.
I just asked what the benefit of using those terms was, told her that I was insulted, and asked her if she would refer to the death of her 23 week baby as the miscarriage of a damaged fetus.
I just felt it was a low blow, but don't need her to apologize for it.
Especially since she denied it was directed at micropreemies, but rather a way to describe her own son. And I for one am not touching that one.

8:57 PM  
Anonymous Anonymous said...

The response regarding the intended miscarriage was anything but neutrally phrased. I am not suggesting you stop commenting. I am suggesting that in a post about maternal guilt that you use a bit more sensitivity in the language used.

It seems you feel you are above criticism. I think none of us are. I find it sad that you are unable to feel any compassion for a mom who doesn't see things the way that you do.

9:03 PM  
Blogger Butterfly Girl said...

As a mother of 30wkr twins I do not for one second feel guilty for their early birth. I did everthing I could to keep them in longer. I had 1 mo hosp. bedrest and at 30 weeks my water broke. I do however feel sad that they had to endure all the tubes and needles and pain in the NICU. I have cried many a tear about the scars they have on thier bodies because of the things that they needed to have done to survive. It has been 8 months they are doing great, but the pain of that exsperiance is still there and I suspect always will be. Makes me thing twice about having other children.

9:15 PM  
Anonymous Helen Harrison said...

Just read the Detroit Free Press article(on the WAPO website) about the medical blogs, featuring Neonatal Doc.

Is this article in any way related to the removal of the thread on nurses calling in "sick"?

9:32 PM  
Blogger Fat Doctor said...

I checked in on the comments just to be the 59th, and the first half of them were surprisingly honest and collected. As I kept reading, I saw the usual breakdown occurring between commenters. ND, what is it about your posts that invites such passion?

Anyway, I enjoyed the post. For what it's worth, as a mom of a 31 weeker, I have pre-emptive guilt for the baby I'm trying to conceive. I realize it may happen again and may not have the lovely outcome we had with Son. Still, I intellectualize the guilt and choose to go on with conception, if possible.

9:45 PM  
Blogger kate said...

(this is my attempt to be commenter number 60, just for fun. Probably by the time i put it through there will be a different 60th comment!)

I actually don't think it is ND's posts per se that causes the breakdown but perhaps that not everybody here chooses to be careful with their choice of words when discussing sensitive topics. And it is very easy to be misunderstood on the internet.

I just read the freep article too and thought it was rather one-sided and silly. I love this blog for its honesty and realism...and the difficult, sensitive topics which cause the aforementioned furor. Keep blogging, ND!

Re the original post topic -- yes, guilt is part & parcel of motherhood. As mothers we expect to be able to shield our children from harm and when we are unable to do so (even through no fault of our own), guilt is very very common. My son was stillborn at 34 weeks for no known reason, and yes i do feel guilty for this outcome though logically this doesn't make alot of sense. Like Julie who commented previously, my mother blames me for his death (because i travelled and had houseguests while pregnant?) and paradoxically, having to confront and fight against her blame has helped me get a handle on my own guilt feelings about his death. But i feel guilty for my parenting shortcomings with regards to my living children, too.

10:23 PM  
Anonymous Rae said...

More people can be won with honey than vinegar.

There are many things about your advocacy that are admirable Helen.

At times I have seen you respond to mothers of premature children very sensitively. In the comments on this post (which was not about erroneous implications that preemies who were not diagnosed as severely handicapped by age 2 were either normal or only had "learning disabilities") you were lacking sensitivity. Your comment was not "evidenced-based" (you do not understand the definition of miscarriage) or "neutrally phrased"

You appear not to care. You also apear dishonest (saying your comment was about your son when the tense and your later comment seems to belie that).

Your lack of graciousnes speaks volumes and unfortunately colours every other statement you make.

And as to dismissing those who are offended as "new mothers of micropreemies" and "overly sensitive and perhaps really angry about the information I have been offering about outcomes" I am not the mother of a premature child, new or otherwise. I have found your posts to be very interesting and believe your voice is important and needs to be heard. Your dismissal is simplistic and naive.

10:51 PM  
Anonymous Helen Harrison said...

To Kate who said:

"I love this blog for its honesty and realism...and the difficult, sensitive topics which cause the aforementioned furor. Keep blogging, ND!"

My sentiments exactly! These topics are so important, and being able to express ourselves honestly about them, as you have done, Neonatal Doc, is vital. The number of posts to this thread alone is testimony to a major level of interest.

To fat doctor: I also felt pre-emptive "guilt" or "gnawing anxiety" -- I'm not sure what to call it exactly -- when we made the decision to try for another baby. It was five years after our son's premature birth, and I was terrified.

Our daughter was born at full term in 1980. She is also out there reading this blog, so let me take this opportunity to say, "Hi, Amy! I hope you will join the discussion."

10:57 PM  
Anonymous Anonymous said...

I get so tired of people whining, "You hurt my feelings...."

If you don't like it, ignore it. It's just a comment on a web blog, for goodness sakes.

11:04 PM  
Anonymous Helen Harrison said...

To Heidi:

Yes, I remember you! I would love to hear more about Bennett! Would you please contact me at Helen1144@aol.com ?

To rae:

I also invite you to post me at my personal email. Let's free up the blog for "guilt."

11:10 PM  
Anonymous Anonymous said...

If you get sick of whining why don't you take your own advice and ignore it?

11:19 PM  
Blogger Ex Utero said...

Tag!

You are the proud recipient of the "thinking blogger" award (it's also a meme that requires you give the award to five worthy recipients). You can get the award (and read all the nice things I said about you) by copying it from my site.

Ex Utero

2:39 AM  
Anonymous C & V said...

I see some irony here in these last posts: responses asking for Helen to apologize sound a bit like asking Helen to feel guilty. The irony, of course, is that this was originally a post about guilt, and Helen asks repeatedly for us to get back on-topic.

I, myself, in the newborn nursery the other night, said to a VERY fussy baby, "If you don't stop crying, your mother is going to throw you against a wall, and you will be wall-art." I am confessing this outrageous comment to you-all, because NICU nurses say stuff like this--it is what we call "black humor". It just slipped out, and the newborn nursery nurses, who think of me as a gentle soul, were shocked. We who have been "in the business" a long time, say stuff like this. Likewise, Helen may have said something that sounds insensitive or tough to some of you--to me, it is like a tough-love comment. I really DO understand it . . .

I have a friend who is now 40. He has gone through many diagnoses and counter-diagnoses of his health problems over the years. He is basically 100% disabled, has chronic pain and has episodes of narcolepsy, which has led to him being in several serious automobile accidents--with further injury each time. I say, to his face, that in another time in history, he would not have survived this long--but in this time in history, medical science is keeping him going. He feels his life is useless. It is another case of the antithesis of the survival of the fittest. In this case, the survivor is pretty miserable. I see parallels here . . .
Chris and Vic

7:13 AM  
Blogger buddhist mama said...

Thanks Sheila and others for your eloquent defense of Helen. To get back to the topic of guilt...

I think guilt is as old as human nature. Very often, it seems to be about trying to make sense of the senseless hand fate deals us. Yes, it is also about control, but consider the broader view of guilt as a kind of secular ritual that allows mothers to rationalize and thereby subdue the inconceivable chaos and incredible shock of premature birth.

I was guilty for the entire 77 days my 26 weekers were in the NICU. Yet once they came home, I could finally get on with taking care of them and the guilt vanished w/o a trace. In my case, the guilt had much to do with feeling so helpless and stymied during the time that my children were in the NICU. But that is another story, having to do with kangaroo care...

I think the guilt that preemie mothers may feel in particular (as opposed to all mothers in general) arises from being relegated to the unnatural sidelines as the medical staff and monitors take over the job that one's womb was supposed to finish. While I am grateful and respectful for their job, I honestly wish it had been mine to do.

7:58 AM  
Anonymous Christina said...

Not sure if people will get to this point in the comments!

I think it is interesting how much of this discussion has focused on mothers. No one mentions fathers at all! Of course most of the commentators are women- but guilt about children and their outcomes- whether they are micropreemies or not- seems to fall squarely on the shoulders of mothers. Of course men don't carry babies in their wombs and struggle with the "did that glass of wine I had right after conception cause my child to have ______?" sort of question; but where do fathers fit in this discussion? Do they just not feel guilty as often as mothers or do they feel guilt about things and not discuss it?
Do any preemie moms have any stories about their husbands/partners guilt or non-guilt?

8:54 AM  
Anonymous Anonymous said...

My oh my...we seem to have a lot of Narof members over here defending Helen. Perhaps you all should start a blog of your own. Or maybe you already have...better known as "The Preemie Experiment."

12:19 PM  
Anonymous Anonymous said...

chris and vic that is never funny and never ok! There is nothing humorous about it. If you have stress take it out some other way. This is akin to how resident Germans started to hate the Jews for their own victimization.

5:27 PM  
Anonymous Anonymous said...

Anon 0527-
You are clearly not a nurse..."gallows" humor is part and parcel of a medical environment. It is not meant as disrespecful nor does it mean that we don't care greatly for our patients- the opposite is true. We treat broken, sick, suffering people day in and day out and sometimes humor is the only way to relieve the stress that this causes. Chris and Vic has most likely seen too many babies who were truly thown against the wall by their mothers- I know I have. So when I have a baby withdrawing from inutero drugs- crying his fussy, grating cry- I'll rock him and pat him and say- "hush little one- if you cry like this when you go home for your addict mom she'll shake you hard" It breaks my heart that the baby is going home with her to begin with...but we are helpless on that front- maybe the humor is a way to deal with that helplessness.

5:52 PM  
Anonymous Amy H. said...

To Helen Harrison who said: "Hi, Amy! I hope you will join the discussion."

"Hi Mom!"

I've found these posts very interesting and thought I would add my experiences with sibling guilt.

Growing up, I felt guilt toward my brother.

I am the younger sibling by five years. My brother was (and is still) sensitive toward high-pitched noises, and being a little girl capable only of making high-pitched noises, I got on his nerves. He would sometimes get so upset he'd push me pretty hard, often trying to push me down stairs.

I would get really angry with him. But even as a young child I would feel guilty for getting angry. I understood that he was disabled and not in full control.

When we'd go on vacations I'd sometimes get embarrassed by his behavior in airports and restaurants. I felt so guilty for my embarrassment. I thought that being embarrassed was betraying Ed.

There were a few very difficult times in my life when I didn't feel like I could turn to my parents for support because they were with Ed in the hospital.

And even now I feel guilty when I realize how afraid I am of the day when I will become Ed's primary care-giver.

I love my brother and am as close to him as anyone can be. But what might ordinarily be normal sibling rivalry takes on a whole new dimension when one of the siblings is disabled.

6:30 PM  
Anonymous Kit said...

A dad here.

The thing about guilt is that you have to be aware of something you did that could have been changed in order to significantly alter the outcome of the event. I know that with Bennett, there's nothing that I could presume to feel guilty about. We did everything we could do to keep him in up to the 23 week mark. To claim any kind of guilt would give me more credit toward the outcome of the pregnancy than I deserve . We simply did what we had to do.

Other emotions I had covered, though. Impotence? Check. Frustration? Check. Loss of control? Check.

It was never a matter of guilt. My family needed me. Wy wife needed me. My newborn needed me. It's my completely unqualified opinion that the dads either do what they have to do to support their family, or they break. During our NICU stay, I saw countless fathers, often alone, doing what they had to do. Remembering that time, I'm surprised at myself for finding the strength to stand beside them.

Thanks for asking after the fathers.

6:34 PM  
Blogger neonataldoc said...

First of all, thanks to all - the east coast physicians, Kate, and Helen and so on - who said nice things and encouraged me to keep blogging. That newspaper article has me a little bothered. I don't want to harm anyone or get into trouble, but I don't want to stop blogging either.

I figured the guilt thing would resonate with some people, but I didn't expect this much of a response. I especially feel for those moms who said their own mothers were blaming them. Good grief.

I, too, wondered about the fathers and guilt part. It seems to me that fathers don't have the same guilt feelings as mothers.

Fat doctor, I certainly didn't think about preemptive guilt. Regarding impassioned comments, I think there is an NICU subculture (microculture?) that much of the world doesn't know about or understand, and that needs a forum to discuss issues like these.

6:47 PM  
Anonymous Pen said...

It's not only guilt about something you might have done or not done. It's guilt at that your own body has somehow let your baby down. The feelins, the, are completely internalised. My son's condition is genetic, and probably inherited. I have guilt from that. And it is no easier to talk to a nurse, a doctor, a psychologist, a husband, a father or anyone. The feeling is utterly irrational and utterly real.

7:48 PM  
Anonymous Helen Harrison said...

To Neonatal Doc

As a friend just wrote to me:

"Blogs give medical consumers the ability to communicate with drs without wearing a gown open in the back - so to speak."

7:49 PM  
Anonymous Anonymous said...

"chris and vic that is never funny and never ok! There is nothing humorous about it. If you have stress take it out some other way. This is akin to how resident Germans started to hate the Jews for their own victimization."



You have absolutely got to be joking?

5:27 PM

10:27 PM  
Anonymous Anonymous said...

Helen--"And I'd like to have you come tell my son: "life is what you make it" when he is in agony from shunt failure or in the hospital. I'm sure this will help him put a whole new perspective on his pain."

I really dont think this person was trying to be insulting. I'm sure he is agony going through the different procedures he must face, but there is no reason he has take on that same attitude that his life is "miserable". Surely what the poster was saying was for you and your son to accept what has been given to you and find a way to overcome it. Not saying you have to all Pollyanna about it but for example look at the late Christopher Reeves or late Ray Charles...both men who despite their shortcomings went after their dreams and continued to love life. Please don't take offense to this. That just caught my eye and I wanted to add something.

Now about the topic, I was born premature at abot 30 weeks. My mother started bleeding at work(luckily she was already at the hospital cuz she worked there). I was 2lbs 8 oz stayed in NICU till I picked up to 4lbs. I was very sick till about 6. Always in and out of the hospital plus I had asthma pretty bad which is still there but now the allergies have taken over. I know my mom felt guilty back then but that wore off eventually. I was destined to have asthma anyway, as my paternal grandmother had it and died from it.

3:21 AM  
Blogger The Preemie Experiment said...

Anonymous (12:19)said...
My oh my...we seem to have a lot of Narof members over here defending Helen. Perhaps you all should start a blog of your own. Or maybe you already have...better known as "The Preemie Experiment."

*I* started The Preemie Experiment blog. I did not consult NAROF before I did so. Yes, I am a member and damn proud of it. But, I also have a mind of my own, as we all do.

As far as defending Helen, she does fine job of doing that for herself.

To bring this back around to the original post regarding guilt...

Thank you Amy for such an honest comment about living with Ed. I worry about this every day with my son and how he will be affected by his sister.

10:43 AM  
Anonymous Anonymous said...

I lost babies at 26 and 25 weeks in the late 80s--preterm labor due to an incompetent cervix and strep B. The second loss was after a cerclage pulled out. Eventually, we had two healthy daughters. While we prepared for a preemie, I went a week or more past my due date with both, leading to talk of induction. (Until recently my older daughter believed that all women were on bed rest for 3 months prior to delivery, as I was with her and our younger daughter.) However, despite a Catholic upbringing (perhaps balanced by a doc father?), my husband and I moved on without a lot of guilt. My mother lost several babies, a sorrowful but clear biological explanation was always given to us, perhaps that shaped my attitude.

I was high risk from the get-go, but spent a lot of time asking questions and reading the literature. My youngest was born after a miscarriage and a long period of secondary infertility, like many here I have what my high-risk specialist termed "a very interesting OB history." But I controlled what I could and knew that medicine is still a blend of art and science. Our losses are part of our family story. When she was young, daughter #1 would ask about when she was born. We would tell her of her grandmother's joyful tears when she first held her. But also told her that she could have been a healthy squash and her grandma would've wept (after the 2 losses).

Re: the black humor: my husband and I actively looked for docs with a sense of humor...we fled the technicians or cowboys who were there to save us. I was born my dad's first year of med school and grew up hearing sad stories as my dad did his residency at a children's hospital. How do you think healthcare workers are to endure the cycle of sadness w/o a release of some type? Please worry about those who do not find a way to vent.

11:48 AM  
Anonymous Helen Harrison said...

To anonymous who said:

"I really dont think this person was trying to be insulting. I'm sure he is agony going through the different procedures he must face, but there is no reason he has take on that same attitude that his life is "miserable". Surely what the poster was saying was for you and your son to accept what has been given to you and find a way to overcome it. Not saying you have to all Pollyanna about it but for example look at the late Christopher Reeves or late Ray Charles...both men who despite their shortcomings went after their dreams and continued to love life."

I don't take offense, but I do believe you and some of the others here are laboring under a simplistic and persistent misconception about my life and my son's life.

We play the hands we were dealt, and do it as happily, positively, and productively as possible. However, I find that "celebrating" the bright side of life requires honestly acknowledging the dark side. YMMV

Cheers!

Helen

1:02 PM  
Anonymous Anonymous said...

I feel guilt about letting Helen's comment about referring to a pre-term baby (either hers or anyone else's)as a miscarriage, or a nature intended miscarriage, pass. In my daughter's memory, and to alleviate my maternal guilt, I'm going to correct her.

It is medically impossible to miscarry after 20 weeks. After 20 weeks, it's a pre-term birth, viable or not. Referring to a CHILD as a "miscarriage" is upsetting, especially to someone whose "miscarriage" didn't make it out of the hospital.

I'm not expecting an apology, because I can tell you have a hard time admitting that you're wrong, or you might have done anything differently. You have so many worthwhile things to say, I don't understand why you insist on saying them in an offensive way. You could really increase the number of people that HEAR you, instead of focusing on your word choice, if you'd just soften it up a little.

10:19 PM  
Anonymous Helen Harrison said...

To Anonymous:

Let me try to relieve your "guilt."

In 1975 when I gave birth to my preemie, his birth (at estimated g.a. of 27-29 weeks) was considered a "late spontaneous abortion."

In the medical literature, the terms "spontaneous abortion" and "miscarriage" can be used interchangeably, although "miscarriage" is a lay term, and is not much used in medical literature.

Benson, RC. _Handbook of Obstetrics & Gynecology, 5th Edition_ 1974.

10:47 PM  
Blogger Shannon said...

Helen said "We play the hands we were dealt, and do it as happily, positively, and productively as possible. However, I find that "celebrating" the bright side of life requires honestly acknowledging the dark side."

Everyone has a bright and a dark side to life. You cannot refer to just special needs as being this way. And LIFE IS WHAT YOU MAKE OF IT. I am not saying that it is easy for anyone that has a disability but life IS better for them with accepting and positive parents/families.

Also, sure disabled people go through a lot of tough times and procedures, but that can also fall on ANYONE who isn't disabled.

And I do acknowledge the dark side of Ashton's life...but I would rather celebrate and enjoy the bright side.

Like I have said before, acceptance goes a LONG LONG way.

11:04 PM  
Blogger kate said...

Helen: Yes, but mercifully it is no longer 1974.

It's getting late, but tomorrow i will send you an email about this issue...

11:09 PM  
Anonymous Helen Harrison said...

To Kate who said "Yes, but mercifully it is no longer 1974."

In my comment I was referring to the birth of my son in 1975. That's how it was described to me, and that's how I felt about it.

11:27 PM  
Anonymous Helen Harrison said...

To Shannon who said "And LIFE IS WHAT YOU MAKE OF IT.":

Are you, by any chance, reading _The Secret_?

11:34 PM  
Blogger Shannon said...

Helen, no I am not reading The Secret. I just truly believe that it is true.

I don't know how any mother at 27-29 weeks could feel they were having a "late spontaneous abortion". Especially when this is a gestation where babies usually do great. I had Ashton at 24 weeks right on and NEVER did anything like this cross my mind.

11:30 AM  
Blogger WendyLou said...

re: Major well known non-profit and guilt:

While on bed rest, they began a campaign about giving your baby the whole 9 months. I saw the ads over and over while watching TV. They played on the radio. One thing that really got me was the ads seemed to say that if you got prenatal care, you would not be premature.

Well I had enough prenatal care for 3 pregnancies, TYVM. Get a bored mad mom on bed rest praying for one more week and the put up an ad seeming to say that prental care solves prematurity, and implying that if you don't give your baby 9 months, you are selfish or stupid.... Well I called them, got their media person and hollered. I asked them if they had run this campaign by mother's of preemies, because it just seemed designed to increase guilt among those who had a premature baby.

I feel great guilt. I wonder if I had gone on bed rest sooner, I wonder if I had known what I know now.

I too have pre-emptive guilt. I wonder if the next baby will be preemie or full term. I wonder if I am selfish for wanting another baby, knowing what my odds are for having another preemie.

I have a lot of guilt.

FYI, google warns me that the NArof website may harm my computer so I won't be visiting it.

1:38 PM  
Anonymous Helen Harrison said...

To wendy lou:

The woman who founded NAROF and runs the website was quite ill the last time I spoke with her (she lives in Australia).

I too get the warning message whenever I try to go to the website. I will do my best to contact Beth, the founder of NAROF, later today and see how she is doing and what we can do to fix the site.

2:41 PM  
Anonymous Anonymous said...

from emedicine's medical dictionary:

"A miscarriage is the spontaneous loss of a fetus before the 20th week of pregnancy. (Pregnancy losses after the 20th week are called preterm deliveries.)

A miscarriage may also be called a "spontaneous abortion." "

I don't need you to alleviate my guilt. I did it myself by pointing this out to you, even though your response was completely predictable, and I knew you wouldn't care how your terminology made others feel.

2:59 PM  
Anonymous Helen Harrison said...

To anonymous:

If you have a problem with my statements, I suggest you email me privately at Helen1144@aol.com

I'm sure others are finding this use of the blog as tiresome as I am.

3:14 PM  
Anonymous Anonymous said...

Actually, Helen, I believe what many of us are finding tiresome is your inability to admit that your word choice was incorrect. I have looked up "miscarriage" on various dictionary sites and found your characterization to be incorrect.

4:32 PM  
Anonymous Helen Harrison said...

To anonymous:

Try the medical texts that were current when my son was born -- the definition has *changed.*

But my email address remains the same: Helen1144@aol.com

5:21 PM  
Anonymous Anonymous said...

Helen,

If you find this "use of space" so tiresome, then why don't you simply quit responding?

Take the high road. Don't be goaded into returning the cheap shots thrown at you. You are better than that.

7:37 PM  
Anonymous Helen Harrison said...

To Anonymous who said...
Helen,

"If you find this "use of space" so tiresome, then why don't you simply quit responding?

Take the high road. Don't be goaded into returning the cheap shots thrown at you. You are better than that. "

I've certainly considered doing just that, but I feel that if someone addresses me, I should *try* to respond. I would just like to take it off the blog and into my personal email, which none of my anonymous critics seems willing to do.

However, just ignoring harassment, hoping it will stop, is often counter-productive -- think, for example, of John Kerry, who took "the high road" by not responding to the Swiftboaters.

8:25 PM  
Anonymous Helen Harrison said...

To Wendylou who asked about the NAROF website:

I just talked to Beth in Australia who runs the site and she says it has been under constant attack by fundamentalist groups.

Beth, meanwhile, is dealing with some very serious medical problems, and isn't able to constantly "defend" and fix the site.

Nevertheless, she is going to try to change the format of NAROF to make it less hackable. I'll let everyone know when it is up and running again.

11:13 PM  
Anonymous Anonymous said...

This comment has been removed by a blog administrator.

12:04 AM  
Anonymous Helen Harrison said...

To anonymous:

Actually one of my critics did post me yesterday eevening and we had a very civilized discussion -- at least it felt that way to me.

2:39 PM  
Anonymous Rae said...

Helen
you invited me to email you and voice my concerns privately.
I considered it but chose not to. My concern is that your choice of language (and tense) was insensitive. I don't want a comment on this in a private arena (eg email). I had hoped you would make a comment in the same forum as your original comment that you concede your language is harsh and in stark contrast to that used by most people (doctors, etc) who want their message to be clearly understood and heard. And that you could have chosen either your language or your tense more carefully.

As I said previously your voice is important. It is a shame you use such emotive and loaded language, unclear tenses and poor choice of forum (post regarding guilt).

4:54 AM  
Anonymous Helen Harrison said...

To rae who said: "I had hoped you would make a comment in the same forum as your original comment that you concede your language is harsh and in stark contrast to that used by most people (doctors, etc) who want their message to be clearly understood and heard. And that you could have chosen either your language or your tense more carefully."


I wouldn't honestly be able to say what you want me to say, and I'm sure you wouldn't want me to make a dishonest statement.

In fact, I would personally be offended, and my feelings would be dreadfully *hurt,* to think you would want me to prevaricate.

My offer of an email discussion stands.

9:25 PM  
Anonymous Anonymous said...

Who cares if what she said is insensitive? She isn't posting here to cater to all of you and your delicate sensibilities.

Grow up. It's been said before and I'll say it again: If you don't like what is said, either ignore or it or don't read here anymore.

11:27 PM  
Anonymous Anonymous said...

Obviously quite a few people care or this thread would not still be active wrt Helen's language.

12:30 AM  
Anonymous Anonymous said...

My question is WHY? Why do you care? It doesn't change your situation one iota. Be confident in who you are, what you believe.

Let's say you love the color red. You post a picture of a dress in the most beautiful shade of red and say you love it more than anything. Helen then posts and says the dress is pink. Someone else posts and says the dress is orange.

And my point is....who cares? YOU know the dress is red, no matter what anyone says. Others' comments don't change your reality.

By getting so upset over her "insensitive" posts, you are giving her power over your emotions...power she doesn't deserve, in my opinion. You're also giving her the opporutinity to play the martyr. Helen against the world, fighting for the truth.

I say ignore her. Don't give her the time of day.

9:03 AM  
Anonymous Helen Harrison said...

To Anonymous 9:03 who said "ignore her. Don't give her the time of day."

This is the best idea I've heard all day!

2:32 PM  
Anonymous Anonymous said...

Your ignore her comments certainly have merit, but when someone poses as some kind of 'expert' (and to be fair, she is familiar with research, and knows much about the effects of prematurity)her comments might be given more consideration,and there is the possibility that her demeanor might be imitated. This is why it matters that I speak up and say the dress is red. Even if Helen doesn't hear me, hopefully others will, and not think of my child, Helen's child, or anyone else's as a miscarriage, not in 1974, not in 2007. (The biggest reason I choose not to email her privately)

You are under the understandable mistaken impression that I (one of the anon's) am upset. Not exactly. I can choose to let my stomach turn, "get over it" and move on. But it is because I have a stronger stomach than a new mom with a micro-preemie that I choose to speak up to her. It is because I am not ultra sensitive that I have the energy to say this. There may be no hope for Helen's language choice, but hopefully someone else will stop and think before typing something like that. Because pre-term babies are people.

7:10 PM  
Anonymous heather said...

"But if a mother feels guilty about causing preterm labor and has a child who is an NICU graduate with deficits, is that a constant reminder of her thoughts of guilt? Or does the rational side of her, the one that knows in her head that the prematurity was not her fault, eventually prevail? Does the joy of her child drown out those guilty feelings? If a child is more severely impaired, are the guilty feelings worse? Do they last longer? "

YES. At least that is exactly how I always feel from the first moment I become aware of an issue related to my son's prematurity until I have fully experienced (at least 100,000 times) all of the guilty thoughts and emotions associated with the issue and can simply accept it. It has been five years and there are still things going on in my head that I am unwilling to acknowledge.

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