Saturday, December 16, 2006

Honesty

In a comment on my Pawns post a few days ago, Stacy, a mother of an ex-25 weeks gestation baby, makes an earnest plea for us to be honest with parents. She means (I think) that we should not only tell them the statistics about survival and major adverse outcomes - cerebral palsy, mental retardation, blindness, deafness - but also about the more "minor" problems; her daughter, for example, has emotional problems, fine motor problems, epilepsy, and other issues. As a member of ex-premie parenting groups, Stacy knows that her daughter is not alone in having these things.

Stacy, first of all, I hear you. I agree that we must be completely honest - some might say brutally honest - with parents when we discuss outcomes of extremely premature babies. I not only tell parents the chances of a child having major or moderate disabilities, such as varying degrees of the afore mentioned CP and mental retardation, but also try to convey to them that children classified as "normal", because their motor and mental capabilities are in a normal range, still have an increased risk of what I call "soft" neurological problems, such as learning disabilities, attention deficit disorder, clumsiness, and so on.

On the other hand, though, I don't know how much good it always does, because the parents so often just don't seem to hear it. This is not a criticism of the parents; I think it's just part of what happens around the birth of an extremely premature baby. Not surprisingly, parents are not at their most rational and understanding at the time. They are both fearful about the prematurity and excited because they're having a baby. Also, the amount and type of information we have to give them about premies is difficult to take in at any time, let alone when they are in such an emotional state.

We still have to try, though, and I think most of us do. But how often do we mention it? Although I realize that we must repeat some things before they sink in, we can't be daily bombarding them with discouraging statistics. We have to give them some hope, because the fact of the matter is that there are still many reasons to be hopeful. A child may have attention deficit disorder or fine motor problems or emotional issues - but may still be the love of his or her parents' life, a huge source of happiness and fulfillment for them. (For that matter, children with mental retardation and cerebral palsy can also be a source of that joy.)

Often we are giving parents information about premature babies because they are trying to decide whether to have their extremely premature baby resuscitated or not. I understand that the prospect of a child having severe mental retardation and cerebral palsy, with a quality of life thought marginal or unacceptable by many people, can affect the decision whether to resuscitate or not - but should the possibility of having a more minor problem like attention deficit disorder make a difference in the decision to resuscitate? I'm not quite ready for that eugenic a society.

The other day I was talking to the parents and grandmother of a newly born 24 weeker. I told them the survival statistics, using both percentages (50 to 60%) and fractions (5 out of 10). I told them other outcome possiblilities, of the immaturity of all organ systems and the consequences of that. When I was done with my spiel I asked if they had any questions, and the grandmother asked, "When 24 week babies are born, do any of them survive?" I had just covered the subject in detail. Now I simply said "About half of them survive." That, I guess, is all she could handle at the time.

26 Comments:

Anonymous Shamhat said...

We had parents come in at 24 weeks for tocolytics who wanted to decline treatment if the baby was born before 27 weeks. Both the nurse practioner and the neonatologist told them that the hospital was obligated to treat, including intubation, if a 24-weeker took a spontaneous breath during resuscitation attempts.

Then they both went out to the nurses station and said that if they were 24 weeks pregnant and birth was imminent, they would avoid hospitals in order to avoid resuscitation. One actually said something about "head out camping without a cell phone."

The option of signing out was not presented to the parents, though--and it would have precluded treatment for the contractions.

I don't know what happened.

6:38 PM  
Anonymous Anonymous said...

There's too wide of a gap between what some think is an acceptible outcome and what others would feel is such a poor outcome that they'd prefer a DNR.

With so many different perspectives parents can have, you just have to present the information with the odds of this or that happening and let them come to their own conclusions.

Last year this time it was me on that bed with a 26 week likely soon-to-be preemie and the neonatologist spelling out the risks. I didn't misunderstand anything she said, because of my medical background and extensive experience with older ex-preemies. As hard as it is to hear all of that, it's important that you say it.

Fortunately my preemie lasted several more weeks before making his debut.

6:54 PM  
Blogger Terrible Palsy said...

You have to wonder whether if parents were to know about the more long term "minor" ailments of premmies whether it would be a matter of being forwarned or instead create paranoia in the parents. I think that it is only with niaivity that you would believe that your extremely premature baby would escape the experience unaffected. Its all about degrees. While some prems have the more serious conditions like CP or mental retardation, others escape with only a learning difficulty or hypersensitivity to loud noises.

CP was the one thing I feared the most but was also the condition my son had (but wasn't diagnosed until he was 8 months old). I would have doubted my ability to cope with a disabled child three years ago. But as it turned out, I not only cope but my son gives me and hubby and immense amount of joy each and every day - even if my back is worse for the experience. Thanks for acknowledging that.

8:48 PM  
Anonymous Kelly said...

As the parent of a 28wk'er with heavy complications, I'd say the best way to reach parents is slowly and starting with the big stuff and working your way down (I'm sure you do this already). Our NICU Doc first gave the CP statistics, then when we understood that moved on to the smaller things. At the end we were told who in the NICU had the most experience with CP children (therefore who to ask questions) and those people were more regularly assigned to our son as his care team. We were also given information to read there and in our home time, to understand what was/could happen.

That being said, however, I don't believe (selective memory, perhaps) anyone ever mentioned any of your "soft" problems beyond ADD/learning issues. I can't recall anyone mentioning emotional issues or clumsiness or anything of that sort.

Perhaps the best way, then, is to impress upon the parents that their baby is going to possibly be different in every single aspect of his/her life. I think, often, parents are just desperate to have some aspect of their baby be normal.

8:50 PM  
Anonymous Anonymous said...

my heart goes out to these little ones and their parents.

9:34 PM  
Anonymous Anonymous said...

I am wondering if potential parents" should know this information before they become parents. Should patients with known fertility/pregnancy problems that carry a high risk of premature babies be told about the extra physical/mental risks that preemies face in detail, before that potential pregnancy?

Would this have an impact on them choosing whether to pursue pregnancy? Would this help them prepare in the advent of a premature birth? Would it make it harder for them to bond with their premature infant?

11:17 PM  
Anonymous Anonymous said...

You might be interested in a recently published consensus statement on perinatal care in Australia.

The article is: "Perinatal care at the borderlines of viability: a consensus statement based on a NSW and ACT consensus workshop" by Lui et al and was published in the Medical Journal of Australia on November 6 this year. (MJA 2006; 185 (9): 495-500)

here is a link to the article:

http://www.mja.com.au/public/issues/185_09_061106/lui11142_fm.html

Essentially the article recommends that between 23 and 26 weeks gestation the decision to initial intensive care should be in parents' hands...

2:39 AM  
Anonymous stacy said...

Thanks for listening neonatal doc!

Over the past 8 years we all have gone through more than I ever thought we would. It was (and still is) a roller coaster ride. Once we are on the way up something happens that sends us spiraling down the coaster. Because of this, prematurity and all that goes along with it, has become a passion for me. I speak to many parents who are just begining their ride and also to docs who have joined the journey.

Over the years the most common discussion is always "we weren't told about ...". Many parents were told about the biggies (ROP, CP, mental retardation) but not about the mental illness aspect. A very eye opening moment for me was during a conversation with an adult former preemie where I was told that the psychiatric illnesses are far worse than the ROP and CP. Since that conversation, I have spoken to quite a few other adult former preemies who echo that feeling. I can tell you from my own personal experience with my daugther, the mental illness aspect of her care is harder to handle and treat than any other aspect of her care. By far.

I am often asked if, with my current knowledge, I would still choose to save my daughter. My answer... I didn't choose. She did. She was breathing on her own for hours. By the time she needed help (went on a vent) it was only because she was tired. She came off the vent (by her own hand) within her first 24 hours of life.

But, last year I became pregnant. It was a huge surprise since hubby and I were being very careful. We had chosen to not have any more children. It wouldn't have been fair to bear a child that may also be born premature and not do as well as our daughter, just so we could have another child. After the initial shock wore off we searched for a high risk OB that would honor our decisions in regards to our cut off, in terms of gestation, if the baby was born early. We did eventually find a great OB who let me be in control. This was even more important when we found out that we were having a boy. "wimpy white boy" ran through my mind every day. When it became apparent that the baby was coming early I did agree to 1 round of steroids (at 32 weeks). After a week my OB tried to convince me to take more but was on my side when I would not agree. My son was born at 35.4 weeks.

I wish all parents could be in control of their own care, the way that I was. But, it is simply impossible. I was clueless when my daughter was born. The way I treated the first neo (when my water broke) was not right. But I didn't want to hear that my baby would not be normal if she even lived. Most all parents react the way that I did. For this reason, I think it is virtually impossible for neos to have an intelligent conversation with parents who are facing an impending premature birth.

How do we solve this? I'm not sure but do have some ideas.

It is crucial that those of us who have "been there done that" start to speak out. Prenatal classes MUST start adressing prematurity in a stronger light, not just brushing over it, considering (on average) 1 in 8 babies are born early. Media must step up also. I have spoken at events about "the other side of prematurity" but I never get coverage. Instead, on the news and in the magazines you will see the fluff, "feel good" stories. I am not asking people to be prepared to make end of life decisions, while they are still pregnant, but just that they understand that preemies are not just tiny full term babies. The lack of accurate knowledge in the public hurts our little ones. Pediatricians don't know how to handle their care, specialists are baffled and many preemie parents just get blamed for worrying too much.

I definitely do NOT expect neos and nicu nurses to deliver all of the news. Parents are not in the right frame of mind to hear it. And, they may be one of the lucky ones and have a child that has only a few issues. But, what I am still having to beg for (when speaking to nicus) is that the staff does not tell parents that their child will be fine.

I was talking to a neo once about a parent who was asking about damage from ventilators. He went on to tell me what he had told her. When I added, "don't forget to tell them that the longer the tubes are left in, a high palate results and it will need to be fixed when they are older." he said to me, "I don't want to hear about all of the aspects of care when they are older. I still have to do my job and it is depressing."

This is why I don't rest.

For all who have made it through my 2nd mini novel... thank you. It is through discussion that knowledge comes. Knowledge brings awareness. Awareness leads to education. I am always learning. It is important for all of us to see life through others eyes.

Neonatal doc... I thank you again for listening. I've learned a lot from you and your followers.

After all... we are all working for the good of the babies, right?

10:17 AM  
Anonymous Christina said...

As a PICU nurse I see plenty of ex-premies who are admitted sick over and over and over again- many have trachs, g-tubes, CP, blindness, severe delays, etc. I do not have children yet myself, and it scares me when I see these children as I absolutely would not want to have a premature baby- just like the couple that Shamhat mentions. (I know that no one wants a premie- but pediatric nurses are especially paranoid in this area as we know fully what having a premature baby can mean-we see the long term issues every day.) But suddenly, I will have an ex-25 weeker as a patient (as I did last night) who is generally on track developmentally- at 14 months walking and babbling and smiling and- as in the case of my patient last night- about the cutest thing you've ever seen.
So then one shift I might see an ex- 25 weeker and think to myself- "if given a choice I would not want to pursue resuscitation of my child if they were born this early" and then the next patient makes me think differently. So how could parents ever be expected to make decisions like this- as the article cited by anonymous 2:39 suggests that they should?

The wrench in all of this is that at the moment of birth premies are generally OK- it's the continuing (and unavoidable) life sustaining NICU interventions that cause the CP, blindness, lung disease, etc. So then should we resuscitate initially, but then withdraw care once they've had a head bleed or some other downturn in condition?

11:26 AM  
Blogger Dream Mom said...

I think you do what you can and be honest up front and give the statistics like you have done.

As far as the future, I think it would be totally overwhelming to have all of that information up front; I also think it would be totally overwhelming for the parent of a normal child to have all of the information up front with regards to what the future holds for the child's teenage years or whatever other difficult time they might encounter.

At some point, I think every parent can think of a situation, some worse than others, where if they had the information up front, that they might make a different decision with regards to whether or not they want to have children or not.

I also think, that there is a little bit of wake up call, for parents without any experience in the medical arena or experience with special needs children. Prior to Dear Son, I thought that a "normal" child was the norm and that kids were either normal or special needs,as in severely delayed. I never really thought about those kids with the "soft" neurological problems, so to speak. I think those problems are also a lot more prevalent today than they were fifteen years ago.

I also tend to hear some anger, not in Stacy's post or even in those that comment here, but in general, where parents didn't get the normal child that they expected. We live in a world where we expect to get everything we want and sometimes we don't. It's sad but true.

Medical issues with children and infants are sad and unfortunate. I doubt there will ever be a script that will work for everyone.

4:31 PM  
Blogger Terrible Palsy said...

Sorry, I just wanted to respond to what Christina said. My son has only a moderate disability (CP). He doesn't have seizures, he talks, laughs and loves. And yes, we are very fortunate because things could have been a lot worse and there is no way on earth I would be without him. I don't think that make a decision to cease treatment based on a brain bleed is viable because you don't know how much damage will result from that bleed.

A friend who has a child with a severe disability was once telling me about a recent visit to the hospital. She was under a lot of pressure to sign a DNR. What she said to the hospital staff and repeated to me sticks in my mind. The hospital workers only see the child when he is sick. He is not like that all the time. you cannot judge someones life or quality of life by what you see in the hospital. it doesn't paint the true picture.

5:12 PM  
Blogger Laura said...

i imagine fo mny parents of mico-preemies there is this huge whooshing sound that is in their heads as the nicu team talks to thm about their critically ill micro-preemie. as a nurse it is frustrating sometime to be asked questions that i had just answered 20 seconds prior. but as a preemie mom, i confess, i heard that whooshing sound a few times myself. i still do on occasion. i try to listen and retain everything, really i do. intellectually i do. but like you said, sometimes the shock, the fear and the dread takes over and
WHOOSH!!!!

6:18 PM  
Anonymous Anonymous said...

Christina, as a mother of an ex 28 weeker who had a brain bleed, I would of found it more devestating if they had withdrawn treatment then having the diagnoses of CP. Until you have walked that path with you own child you can not truly judge those situations. CP is something she has NOT who she is. It is sad that the value you place on an exprem is based upon the normality of mind and body and of course how cute they are.

6:20 PM  
Anonymous Christina said...

I think people were misunderstanding what I was saying in my comment...I never meant to suggest that I would value a child more if they were "cute" or not-(my especially cute patient was just forefront in my mind) or that I wouldn't fully love and value my child if they had CP or other disabilities. And I never said that I myself would withdraw care if I had a preemie and/or decide to withdraw care if they had a bleed (I wouldn't). I was just commenting on the earlier comments discussing withdrawl of care/DNR and parents being given choices based on ALL the information- I was just pointing out how variable the prognosis is for preemies- how babies born with the same degree of prematurity can have vastly different outcomes- and how it is impossible to predict these outcomes when the baby is born. Parents want medical staff to be fully honest and upfront with them from the start- but there is nothing we can say with any certainty about their prognoses.

And I meant no disrespect to any families with children with disabilities- I have cared for many of these children and their families and have loved them greatly. However I have to say honestly, that knowing what I know and seeing what I do at work, I would probably be more upset than the average joe if I had a premature baby with problems, as I have seen the struggles and devastation that this CAN (notice I did not say DOES) bring to families over the years. This does not mean that I wouldn't love and value my child fully if they had any sort of 'issues'- and that they wouldn't bring me immense joy. But I would rather not have a child born with chronic problems- and I- along with my nurse co-workers are probably more concious of the possibily of this- we always breathe huge sighs of relief when a pregnant co-worker makes it past 32-33 weeks of pregnacy before delivery. Stacey's earlier comment about a neonatologists wanting to be ignorant of later outcomes was interesting to me- perhaps there needs to be more dialogue between PICU staff who will care for these children on and off for the rest of their lives and NICU staff.

8:21 PM  
Blogger Laura said...

christina,

i imagine that you truly meant no disrespect with your comments re ex premie patients, cp, et al.
i can tell you that when our family made the choice to adopt our son, a 24 weeker, his outcome was most definitely unknown. so why did we do it? why would i, someone who should "know better" as one of my esteemed colleagues in my nicu said to me back then, why would i do this?

because when it comes to having children, you never know what the outcome will be regardless of pregnancy, birth, childhood, etc. i got lucky with my 5 but trust me, not one of them has turned out anything like i imagined they would thus far. our ex 24 weeker is an amazing child, even with the obvious developmental issues, his diminutive size and the many scars on his body including the one on his belly where he had a g-tube for 3+ years. oh, and while the long term issues can be hard on families, so can the struggles of raising an angry teen....i dealt with both simultanelously during daniel's pedi frequent flyer days and well, i take that over his big sister's angry, hell-bent on destruction adolescence. thankfully, we all survived both.

one thing else i must comment on is cp is one of the potential outcomes related to the premature birth but not necesarily the interventions. our family is very close to four families who have a child with cp and only one was a preemie (32 weeker) the others were full term and three were uncomplicated labors and deliveries. each child is affected in a different way and of varying abilities an disabilities. maybe that is one reason why it was so easy for us to choose to be our son's parents when he was only 26 weeks adjusted age. we saw first hand the struggles and the joys of raising a differently abled child. even the one who was severely impaired lived a wonderful life full of love and he was far well traveled than i ever could. he passed away quite unexpctedly at age 9 and while his family was devastated they shared at his memorial that he was the brightest light in their life and they had no regrets ever even if like tp, their backs were worse for the experience.

9:11 PM  
Blogger Carrie said...

This comment has been removed by the author.

9:46 PM  
Blogger Jodi said...

When my 28 weeker was in hospital I cried, "I just want to know he will be okay." And as one nurse said, "No one can tell you that and anyone who tried to would be sill for doing so."

I guess my point is that whilst we all want to ideally have healthy babies, prem babies throw us a big curve ball and the roller coaster ride never stops in terms of living day-to-day.

Telling me back then that my baby could have this or that wouldn't change the pain and fear; nor would it have changed how I deal with him now.

7:03 AM  
Blogger Krystal said...

Neonataldoc - I read your blog regularly and enjoy it very much. I like hearing your perspective on things and it gives me insight to my own NICU experience with my daughter and son.

My question to you is, has the feedback you get on this blog changed the way you practice at all?

12:20 PM  
Blogger WendyLou said...

When I was 25 weeks, with a baby measuring under 500 grams, we went and had a second opinion from the university teaching hospital.

We met with 2 doctors that day. One a maternal/fetal medicine specialist and a neo.

Both were equally blunt. Both were frank. Both discussed the possible outcomes. Both were very concerned about fetal demise.

We met with the maternal/fetal specialist first. Something about her just caught us the wrong way. It was a very tough consult to sit in. It was very upsetting. The one good thing she did, was insist we meet with the neo. I write that because after we met with her, we had very little hope.

After a dismal lunch of Burger King in the hospital cafeteria, we met with the neo. I do not remember his name, I do know that when I look back on my life, he will be one of the people that were in my life for a very short time but made a profound impact.

He asked us if we had named her, and then called Sydney by name through the meeting. That little gesture acknowledge to DH and I that he understood that this was a very tiny and fragile being, but she was very loved, wanted and a part of our family. He also was blunt, he talked long term outcomes, he talked about CP, mental illness, seizures, failure to thrive, brain bleeds, nec, TPN. He basically gave us a crash course in neonatology. He listened to us. He wanted to know our value system. We discussed how both Dh and I have living wills in place, and how since we have taken that legal step for our protection, how would we want our daughter treated if she has a condition incompatible with life. He discussed how they only make tubes so small, and if she was born too small for the iv's and vent tubes, then as he called it "she was in the hands of the great master plan, bigger than all of us."

We left that consult more educated, wiser, and more able to cope with what we were facing. Even with the harshness of what we discussed, he gave us something that the earlier consult had taken, which was hope. He said that no one will know how she will do until she is born, but that it is ok to hope for a positive outcome, while being aware of the facts.

I pray for him regularly. I pray other families in our situation find their way into his conference room. Something about his way of being helped him reach us when others had failed. We were not hostile to him as we had felt toward the earlier consult that morning, even though he was equally harsh in the facts he presented.

Carrie.... Re: can they have a bottle? NeoDoc has talked about families and the "can she room in" thing.... I postulate that as denial is a normal stage of grief, that these families are in great denial that their baby cannot eat from a bottle. I'd ask them why they are not concerned about nursing, but that is another topic. I was in GREAT denial that DD would actually be in the NICU around her due date. It seemed like EVERY other baby I knew went home much sooner. The day she hit week 39, I collapsed in tears allover a NICU nurse as I realized that we were still no where near coming home. At that point, DD was still not successfully managing suck, swallow AND breathe. She left the NICU at 41 weeks.

That nurse and I email, and we have talked about this. She said she could tell that what was keeping me hanging on was that we were leaving before the due date, and that night it became clear it was not going to happen. I was in pretty heavy denial about how long we would be in the NICU.

We will wait and see what happens in the future. Its all anyone can do.

12:37 PM  
Blogger neonataldoc said...

Thanks for all the great comments. There's no way I can respond to them all! I think we just have to keep trying with parents and also realize that not all parents are the same. What some parents like might be disliked by others. And Stacy, we are all working for the good of the babies.

Krystal: Has this blog changed the way I practice at all? I don't think it has changed the way I practice, since I try to practice evidence based medicine and a blog by it's very nature is mostly anecdotal. But I suspect it has influenced the way I talk to parents, although I'm not sure I can pinpoint how. It's just been very good to hear things from the parents' perspective.

8:13 PM  
Blogger Krystal said...

That is more what I meant - how you deal with families in your practice, not the way you practice medicine, sorry to be unclear. Thanks for the response.

12:10 AM  
Blogger purple_kangaroo said...

You mentioned that a child with disabilities might be the light and joy of their parents' lives, but you forgot to mention that the children themselves can and do also have happy lives and experience joy.

4:35 AM  
Blogger neonataldoc said...

Purple kangaroo, you are absolutely correct. Thanks for pointing that out.

10:03 PM  
Blogger Anne K. said...

Just discovered your blog and am deeply moved by your insights and candor. Thank you for sharing your thoughts and unique observations on some compelling social and ethical issues - I'll be back often.

I am a knitter and quilter and make a lot of small gowns and blankets for the babies who don't survive. Would be interested in your thoughts on these types of donations and if they are as helpful as we would like to think they are. Visit me at: http://sewinggeek.blogspot.com/2006_07_01_archive.html

..(july 1 and july 9 entries on this topic)

Thanks so much for all you do and for sharing your thoughts.

11:29 AM  
Blogger NeoNurseChic said...

ND - I'm deleting some comments of mine - I think Phill was going to forward you along my email as to why...

Sorry about this....

Carrie (NeoNurseChic)

Hey - my word verification is: bpdkijcd....bpd interesting! ;)

9:18 PM  
Anonymous Anonymous said...

Off topic but relevant, are there any statistics, and if so where does one find them, on adult females who were premature infants rates of gestation...as in are former preemies more likely to have premature babies themselves or babies with birth defects?

12:10 PM  

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