Tuesday, October 24, 2006

Concerns II

The other day in my post entitled "Concerns" I wrote about some frustration I have at times because some mothers, when told of a serious problem in their child, only seem worried about not having the baby with them, or not being able to take the baby home. It struck a bit of a nerve; suffice it to say that I was roundly criticized in the comments for my attitude. In some way, I sort of expected that. It always looks bad when an educated doctor, familiar with medicine and a hospital, criticizes a relatively uneducated mother for saying something less than wise when she's in a difficult situation for the first time.

Consider the message received, but do let me try to explain my feelings one more time. I'm aware of the reasons why mothers will do this. I know that when people are stressed they don't always say the right thing. I also know that parents often don't understand what's going on, and even if they do, don't know what to ask. I know that medications can make mothers say some crazy things, although that wasn't the case in the example I gave. I know that delivery of a baby can be an overwhelming experience. Finally, I am well aware that it is not a trivial thing when a baby cannot go to mother's room or go home with her.

Try, though, for a moment to look at it from my side. Sure, it's very important for a baby to go to mother's room with her, but it's far more important that the baby live and not die. It's important to a mother to have her baby go home with her, but it's far more important that she take a live baby home rather than a dead baby. It's important for a mother to not be separated from her baby because of phototherapy, but the importance of that separation pales in comparison to the importance of not letting her baby get brain damage from jaundice. I'm not saying mother's concerns are trivial. It's just that compared to our concerns, the mother's are, well, less significant. And parents don't always get that. And we doctors (and nurses), imperfect beings that we are, can get frustrated by that - even when we understand why mother might be saying what she is.

Let me close by saying that when talking to parents I'm an insensitive boob maybe only about ten to twenty per cent of the time. The rest of the time, believe it or not, I usually have a good relationship with parents. It's a wonderful thing to not always say what you're thinking.


Anonymous Anonymous said...

I have unsolicited advice for you from someone who has been there as the mom without the baby in the room. I am sensible, educated and aware that sometimes a NICU/nursery stay is necessary and I know you are the expert. Here is what I believe happens to make educated, sensible moms devastated not to have our babies with us and why we react the way we do. In my experience, the baby is suspected to have issues and mom isn't always told the whole truth from the beginning. Nurses and docs seem to be willing to observe an infant and keep us in the dark without updates. You are made to feel intrusive or irritating when you want an update. You can't be near your baby because there is no room and the staff wants the luxury of working without meddling parents around. (and frankly it is disheartening to listen to the people responsible for your baby moaning about their long hours) I believe they 1. don't want to cause us undue worry and 2. don't want to take the time to tell us what they are thinking might be the problem. It is an extreme emotional letdown in the throes of PPartum-ness to sit in a room alone wondering what is up. Later when a major problem is communicated we are not at all prepared. I believe medical professionals become callous to the rollercoaster patients and families ride because they experience the condition/illness/setback all the time. For us, these moments are new and so vivid that they stay with us FOREVER. Meanwhile, in the NICU all of the caretaking is happening away from you. You are waiting to feed your baby and others take over with bottles without informing you. They tell you breastfeeding's not in the chart and you are suddenly juggling what you hear from your doc (sure you can breastfeed) and then walking in to see a nurse feeding your baby formula because the neonatologist (who you have not even met) is calling the shots. So my advice is to reflect on why this happens and to encourage you to ask yourself what the experience has been for that mom. If I had it to do again I would have made some reasonable demands...but honestly when I am post partum I can break out in tears just asking for a cup of coffee---it is hard to state your needs effectively at that time. Trust me--we might be saying "we can't have our babies with us" but that is not all we are saying.

5:12 PM  
Anonymous Anonymous said...

dear neo doc,maybe only a few parents actually appreciate the fact that docs and nurses are attempting to care for the babyand are unable to simultaneosly hold oxygen to the baby's face while holding the parents hands and tell them everything is ok when at that stage we just don't know.it is SO frustrating that in my private thoughts these people sometimes remind me of celebrities that have a little dog in their purse or a pair of ferragamo shoes or a lamborghini.what IS a baby to them? an accessory? i personally believe an infant is a person in their own right,with a right to undivided medical attention.who can stop immediate ,urgent baby's medical attention to console parents when no one else can care for their infant AT THAT MOMENT?please have a little respect for our efforts also,we are parents too and do not want to cause you undue worry,BUT WE MUST ATTEND TO YOUR BABY FIRST! most,if not all,intelligent people can SEE we are struggling to stabilize the infant,talk next.please see our side too.and i in no way think most parents are selfish,just worried.we DO CARE,priorities must be set,and talking and consoling are secondary to your infant taking a good ,deep breath.when an infant is in crisis,there is no one available to talk with parents,everyone is hustling to care for the baby.

7:50 PM  
Blogger Kelley said...

I went on the NICU ride and it didn't stay with me forever. My roller coaster ride lasted for a month. I barely remember any of it. It's much like a bad dream these days. Nobody's fault though, it just happened. I think some parents choose to hold on to these things. I don't know why, but sometimes it seems parents just like to re-live it over and over and over in telling their stories. All I am saying is that some parents don't thrive on what we went through. Not all of us want extra attention and sympathy for what was. Shit happens. Sometimes shit gets better. Thank God my shit got better. Now, I'm over it.

12:22 AM  
Blogger Thea said...

Well no duh it's more important that the baby live and not die. Exegesis may be the thing, here. "Going away" can mean going in the other room but also it can mean dying. When someone fears separation often fear of death is the ultimate root of that fear.

12:39 AM  
Blogger Terrible Palsy said...

I agree with Kelley. We survived the NICU experience. Can't remember much of it save for what is in the diary I kept. If our neonatalogist was ever rude to us then it went straight over my head & I have nothing but respect for the job you do. I didn't get to have a natural birth (and won't ever get to experience it again), didn't get to be a big fat pregnant woman; didn't have a take home baby; didn't get to breastfeed - and I don't care. I have a beautiful son and that's all that matters.

1:32 AM  
Blogger jenjerjack said...

ND: I have been reading your blog for quiet some time now, and as a mom who has a child who has been in the NICU i find your blog interesting, to say the least.
One of your comments that is really starting to disturb me, is you referring to the parents as uneducated. What is uneducated in your eyes? Is it young teenage parents who dropped out of highschool? University grads? Anyone who has not gone through medical school?
Even with the highest education out there, in a stressfull situation, such as giving birth to a child that is not perfectly healthy, normal rational thinking is all but pretty much gone. You are caught off guard. You are not thinking clearly. You expected to give birth to this perfect little child and be on you way in a couple of days, you don't expect that curveball of your child needs to be away from you in the NICU to get well. Most parents (who are not in the medical profession) have not even heard of the NICU before and don't know what to expect...regardless of their education!
Please try to understand that this is your life, day in and day out, and for most parents, this is the first time they have had to deal with all this information that is being tossed out at them only minutes or hours after giving birth.
And for those parents who have gotten over their childs NICU stay...Awesome!! I am so thrilled for you. You are right, life goes on, but for some of us, it was way longer than a month. For some of us, the medical ups and downs that may have occured while in the NICU will stay with us forever.
We are not all the same. Every case is different.
Please keep that in mind.

7:55 AM  
Anonymous Dianne said...

I came away from reading the comments on "Concerns" feeling that in the end we'd all been a little too harsh on neonatal doc. I can't speak for anyone else, but I never suspected you of expressing these feelings to the mother or otherwise behaving unprofessionally towards her. I hoped to give you some insights on how things look from the other side and why strange comments can come out of people's mouths in times of stress. I apologize if I seemed to be criticizing you excessively.

Caring for a critically ill patient, especially a baby, is a deeply emotional experience as well. It's easy to get attached to the patient and feel defensive towards him or her--and get angry at a relative who seems to be taking the condition too lightly. I don't know whether this mother was really taking the child's problems lightly or not--I wasn't there and don't know all the details--but I can understand why you might be upset if it seemed to you that she was. Nonetheless, if you can give her the benefit of the doubt, it's probably better for everyone's blood pressure if you do so.

11:30 AM  
Blogger Rinna said...

hello nd,
i just recently found your blog and even though your some of your entries are bordering on "insensitive" (i use this for lack of a better word), i do find them refreshing. it reminds me that doctors are real people too who, believe it or not, care about their patients. i have been on a path of not trusting doctors recently and you've given me a different perspective of what goes on in those brain cells of yours.
thank you.

12:49 PM  
Anonymous Anonymous said...

Sometimes drs can be the one to ask a stupid question too..not just the parents.
My daughter died of a heart condition at 1 1/2 years old, and I saw the heart surgeon about 2 months after she died, and he asked, "How is Madison doing?"
"Ummm..she's dead".
I imagine that sometime even the best and smartest among us ask the most stupid questions.


5:44 PM  
Blogger jennifer said...

Hi Doc,

I'm sure you were wonderful to the parents in person, and I recognize this blog as a place for you to "say" the things you might otherwise not say, and here's another thought: I think NICUs can be very confusing places for parents. In an earlier post, there was the discussion about how sometimes parents are allowed to read doctors' notes and be present at rounds, other times, not. This is just one example of the shifting sands feeling that I had while there. It is very hard for those of us who are new to the NICU to get a bearing. I think the mothers might sometimes be asking, "How bad is it?" Thinking that if the baby can be with them, it must be okay afterall, and if not, then it's really bad...just another way we might be trying to figure out what is going on. Think of it as code language for "I am exhausted, I am nervous, I am worried, and I don't know what is going on here, and I don't even know the words to use to ask you what is going on."

Keep up the good work, doc.

10:57 AM  
Anonymous Anonymous said...

I don't think you needed to explain further. I understood that post to be about what you "thought" not about what you "said". It's a blog, I find your thoughts on the subjects you cover honest and thoughtful. I hope some criticism won't hinder you doing this. It'd be terrible if you felt you had to censor your thoughts to avoid offence. Kind of defeats the purpose of having a blog, I think.

5:42 PM  
Blogger Amy Tuteur, MD said...

Neonatal Doc:

I know what you are talking about because I have experienced it from the perspective of an obstetrician trying to treat fetal distress. Yes, it is true that people say strange things when confront with unexpected situations, but it seems to me that many times there is something more going on.

A good portion of the pregnancy and childbirth literature for lay people claims that since childbirth is "natural" there is no reason to expect any complications. Some books, websites and classes go as far as to claim that doctors overreact to potential problems or even create the problems themselves. In addition the value of various "experiences" is grossly overrated. Rooming in, immediate breastfeeding and "bonding" are imbued with almost mystical significance.

This combination leads many mothers to assume that the baby is always fine, to assume that if the doctor claims the baby has a problem it is because the doctor is making it up or overreacting, and to assume that the doctor (being such a dolt as to be unaware of the mystical importance of early skin to skin contact) doesn't care about the birth "experience" and is willing to cause the baby psychic trauma merely to pretend that he or she is doing something valuable.

Because of these expectations, many parents initially cannot comprehend that there is actually something wrong with the baby.

11:04 AM  
Blogger The MSILF said...

One thing I've noticed since getting deeper and deeper into the medical world is how little an idea the general public has of what medicine actually is. I noticed this when I got questions about some medical thing or other from relatives, who are highly educated, bright people, but who ask questions that to me are so far missing the point that it's hard to even understand where they are coming from. It has been an insight into the world of the patient and how utterly different their experience and priorities are from ours. The best we can do is try to educate and explain what we are doing, so that they can see why the bilirubin level or repeated needle sticks are so important in our eyes.

11:39 AM  

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