Monday, May 15, 2006


Two or three years ago we had a baby born with osteogenesis imperfecta, a disease that makes the bones very weak and prone to fractures. There are several varieties of it, and this baby had one of the most severe kinds, so severe that even his movements inside mother were enough to cause him to have many fractures. Theses fractures stunted his growth and caused him to be deformed. When he was born at almost full term he only weighed about three pounds, and his chest and rib cage were so affected that he could not breathe sufficiently on his own. We had placed him on a ventilator at birth, but it was apparent shortly afterwards that this baby's prognosis was dismal, and that he would not survive off the ventilator. This is a painful disease; the baby winced with small movements. We gave him strong pain meds and my partner recommended to the family that we remove the ventilator. The parents seemed shocked, blew up at my partner, and refused to deal with him again.

I was the next neonatologist to speak with the family after a couple of hours and their hostility was almost palpable when I entered the room with the nurse manager to meet them. We had several more conversations over the next two days; their anger resolved and finally they agreed to remove life support. The baby died shortly thereafter.

It turned out that the family had been told that the child likely had a fatal disease several weeks before by a perinatologist, a specialist in high risk pregnancies. I was a little annoyed when I heard that (although you feel guilty being annoyed at a family who just lost a child). Why had they blasted my partner so, when they had been told many weeks ago of the likely course of this baby? They told me they had chosen to not believe the perinatologist and hope for the best.

In retrospect, I can see they were going through the five stages of grieving that Kubler-Ross noted: denial, anger, bargaining, depression, and acceptance. They just had a very long and effective denial phase, and reached the anger stage when my partner reaffirmed the bad news. My partner is excellent with parents; he was just in the wrong place at the wrong time.

I've seen this sort of thing happen before, although usually the family isn't so hard on the doctor. It's appropriate that it takes a little while for the parents to accept that they have to stop life support for their child. It just would have been easier if at least some of that adjustment period had occured during the pregnancy, rather than afterwards.


Anonymous Anonymous said...

As a Mother who lost a baby five months ago after eight weeks of life following eight more weeks of knowing that baby had a potentially life altering condition, I had expected him to die inutero or near birth... Hope kept me going!! What Mother ever wants to give up hope on their child?... I enjoy your blog and your entries.. but just wanted to comment that it would be "nice" to have had that mother go through those grief stages while the baby was still inutero... but unfortuately, life doesn't work that way..some people are quicker than others in the process. My son, amazingly, to everyone's suprise,improved after birth until a horrible infection took over and he could not fight effectively any longer. It was incredibly surreal to comprehend that he was actually dying when they had to discuss the reality of removing life support.. a slap in the face.. Those parents were angry.. I cried... for a couple days before we let him go! I knew then and still know now that it was the best for him, but I miss him so! It has to be the hardest thing to ever do.

3:53 PM  
Blogger Ex Utero said...

I think one of the untold horrors of what we do... one that Kubler-Ross never could have envisioned, is the effect that the price tag and the environemnt of neoantal health care has on the five stages of grief. It certainly has a tendency to push parents into the stage of anger faster and keep them there longer...and then there's the issue of counter transference. There is this unwritten sense of urgency to move them along because in neonatology there are often so many resources, so many people who are putting in shifts and other families who are sharing that nurse, whose child is not getting as much attention that day because of the issue surrounding a child for whom their are no good life sustaining solutions.

We can't just let the parents be with their children a lot of the time. Sometimes we can and I know we all do, but all too often the NICU is not like that. So many other places in the hospital, death creeps up slowly and it takes for...ever, and the family files in and then files out, gets a doughnut, whatever. In the NICU we end up pulling the plug. If we don't we can sustain life in some form indefinately. That's the problem with developmental biology. There's all to often some part of the baby you can keep growing even when some other part is completely messed up and incompatible with life.

We need to add a sixth stage of grief in neonatology. Call it the "Oh my gosh I'm not in Kansas any more" stage. Well, OK NeoDoc YOU are in Kansas. But for all too many parents, the NICU is so alien that they can't get emotional traction. It's not disbelief, it's culture shock. they have to get through that before they can get to disbelief.

4:16 PM  
Anonymous Ged said...

I've been wondering for some time whether Kubler-Ross should be set aside with gratitude in favour of... what else? Some days it just doesn't seem to fit what I see when I go to work. It boxes up grief, and how do you box up a flood?

2:43 AM  
Blogger That Girl said...

I have to chime in and say - I heard the most ridiculous crap after I was diagnosed in-utero. My son had HLHS, which isnt "curable" except thru a very risky surgical procedure.
At 20 weeks, I had 20 left to go and some days it was all I could do not to slash my wrists in horror.
The worst was not knowing my baby would die but having someone call me (or email) EVERY WEEK to tell me of how they heard about me and their friend (it was NEVER the actual person - urban legend anyone?) was also diagnosed in utero with HLHS AND Downs and it turned out, the baby was fine!
This crap made me even more ticked off and depressed but the other women I knew who were going thru the same thing (the internet IS good for something) swallowed these stories like manna from heaven.
So blame the idiots who no doubt start these false stories hoping to mitigate some of the horror of carrying Dead Baby Walking. Im sure they are trying to give hope, when all it really does is make the fall a lot harder.
I have to say I see the same thing now in my HLHS support group - new, in-utero diagnosed members are greeted with stories of joy and triumph. I send them a list of "Things I wish someone had told me". Some people thank me and some people ignore me because of it.
But you will always have the "Hope Effect". Like my perinatologist told me "You only hear about the success stories."

9:51 AM  
Blogger Flea said...

I was a resident in the ICU when a child with multiple congenital anomalies was dying.

Outwardly, the family displayed an appearance of acceptance. Many were even smiling, though they were sad smiles.

The attending, however, took me aside and just shook his head, seeming dismayed, even disappointed.

"What's up?" I asked him.

"You try to do the right thing, man..." He didn't finish. Imediately I understood that this family had lashed out at him in the conference room.

I felt terrible for him, but he handled it beautifully. I'm sure he slept well that night. I didn't.



3:39 PM  
Blogger NeoNurseChic said...

I just was inspired by your post to add to my blog with half of my term paper for last semester's course on role of the advanced practice nurse. We had to chose a nursing theory and basically apply it to our work in nursing. I chose the theory of chronic sorrow, which looks at the grief experienced by parents of premature of severely disabled infants throughout the life process. It's something I hold near and dear to me as I not only work very hard to help ease parents' sorrow, but also to ease my own chronic sorrow through loss of my own health. When I read that theory in my text, I couldn't believe that someone had actually studied the processes of chronic sorrow in the parents of disabled children (myelomeningocele) and that of the chronically ill. Other people DO think about these things besides me! haha

I'm sorry that your partner got ripped into by the family. I've never been ripped to pieces by family, but I have dealt with grieving parents quite a bit in the NICU. Sometimes it is to allay anger they feel at a physician, diagnosis, another nurse, etc. Sometimes it is just to sit with them and talk for awhile.

I did the latter over the weekend when I took a break. A parent was sitting out in the hallway outside the unit, and I sat down just to talk about things. Weird that I felt tears burning in my own eyes as we talked about how what happened just wasn't fair... Then we started talking about our pets and even laughed some.

Grief takes on all forms... Myself, I try to roll with whatever stage families seem to be in at the time. Some of them grieve and their child isn't dying - but it's just as normal to grieve the loss of normalcy...which is why I focused on that for my term paper. How I wish I could take the pain away from each one of them...

Take care,
Carrie :)

5:43 PM  
Blogger neonataldoc said...

Excellent comments on this post! Thank you. I don't want to take away hope from people, but there has to be some sort of balance with reality. And everyone has their own way of grieving, to some extent. Anonymous, I'm sorry for your loss. It's good for us physicians to hear what it's like for parents.

Ex utero, great comment. I agree, the NICU is a unique and sometimes intimidating environment. And that girl, I agree and hate to see unrealistic things held up to people in your situation. We can't make everything better, but we can be honest.

9:31 PM  
Anonymous armchair ethicist said...

So many things I'd like to say, so little time.

Where to start?

Doc, you are surprised because this family knew already, and were still mad? Consider the possibilities. Not all mfm's are sensitive people, let alone good communicators. Many parents can be very angry with the drs they have seen before you (NICU). That anger may be misdirected. They may wish they could clock the mfm who told them their child would be a vegetable, not worth gestating any further, or somethhing worse (if that's possible), but a NICU doc suggesting termination of life support may be a good substitute.

Even when they know baby will die, they still need to feel in control of something. But no one wants to be in control of the death of their child. Yet that's all that is left to be in control of. Who wouldn't be po'ed?

Finally, giving hope about hlhs. There is a hell of a lot to be hopeful for. It seems the moms of children who (sadly) died fall into two categories. They think those who have surviving children have their head in the sand and they really need to be put in their place because they are giving "false" hope -- or, they are grateful for the time they had and they hope with the hopers. I don't think it has to be that way, but that's usually the way it breaks down. *shrug* As someone who is the parent of a survivor, I choose hope. If my child dies, I am going to fight to choose hope for the others, too. It isn't unrealistic to propose that some children with hlhs live, and live well. Nor is it unrealistic to always have in our periphery the knowledge that it could all end tomorrow. We are pretty tethered to reality, I think; most of us, at least.

5:58 PM  
Blogger That Girl said...

Perhaps I didnt express myself well. It wasnt the doctors who were giving me these stories (urban legends) of kids who were diagnosed with HLHS but then didnt have it when they were born - it came from "friends of friends".
To me, it felt like being lectured to by intelligent design theorists - only politeness kept me from telling them they were full of crap.
I think that the worst months of the HLHS kids life is between 0-6 months - the most dangerous.
I think the parents (perfectly naturally) forget how horrible it was.
I dont tell people "Your child will likely die", but I dont tell them "Everything will be fine, dont worry." I tell them "It will be the hardest thing you will ever do but you can do it."
I have no objection to hope, I object to pretending that everything is roses and sunshine.
And my son is a survivor, I dont preach reality out of some bitter my-son-died-yours-will-too place.
I just believe that hope lies in science and reality, not prayers and legends.

11:29 AM  
Anonymous armchair ethicist said...

I'm glad your son is a survivor and doing well. It was very difficult to tell from your post the first time through, but now it makes sense.

I know the kinds of stories you are talking about - filled with platitudes. Don't you hate the, "they can fix that" comments! On the other hand, it was stories from parents who had btdt that helped me survive. I still look to the parents of older survivors to try to see what may lay ahead. I admit, I also survived on prayers -and when a parent in need expresses that they want prayers, I really offer them. Whether they come to anything, we'll all learn the truth of that soon enough, I suppose. ;-)

1:48 PM  
Anonymous Anonymous said...

It would be nice?! For whom? Your partner and you have the advantage of being able to step out of the picture, analyse it rationally, realize that the behavior was a normal anger stage in grief, and accept that you or he did not a thing wrong. For the rest of her life this mother (and her family) will re-live and re-live these moments and days. She might even someday regret the lashing out. It's SO normal to live in denial when the baby is still inside and invisible, you wait until the last possible second before you have to lose hope.
The worst case scenario that I've seen happen is when a patient complaint in similar situations gets up to managment/administration and you, the innocent, caring provider get reprimanded because they forgot it was a normal reaction in grief. Ours is not to judge! (at least not during acute grief, and so long there isn't physical violence)

OB RN in Tucson

1:30 AM  
Blogger sexy said...







1:44 AM  

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