Wednesday, April 05, 2006


What would you do in this situation? Your premature baby is very sick and might die. You can let the doctors give a medicine that will probably increase the baby's chance of surviving, but will also probably increase the baby's chance of having cerebral palsy. Do you give the medicine, or do you take your chances without it in the hope that if he survives he'll have a lesser risk of cerebral palsy?

It's a tough decision, one that comes up periodically in the NICU. Very premature babies often develop bronchopulmonary dysplasia (BPD), a progressive disease of the lungs that interferes with their ability to take in oxygen and get rid of carbon dioxide. In many children it peaks in severity at a few weeks of age and then gradually improves. It's a bad disease; many premature babies are on a ventilator for several weeks with it, and some die from it.

In the late 1980's and early 1990's studies showed improvement in BPD in babies treated with dexamethasone, a type of steroid. (Don't confuse this with the kind of steroids baseball players use. Rather than bulking you up, dexamethasone makes it harder for a baby to grow.) NICU's all over the country started using steroids liberally to treat BPD. Unfortunately, by the late 1990's, follow up studies had shown that babies treated with steroids had a higher risk of developing cerebral palsy than those not treated with them, and steroid use for BPD plummeted. In 2002 the Fetus and Newborn Committee of the American Academy of Pediatrics recommended that steroids be used for BPD only in "exceptional circumstances", although the committee did not define those circumstances. In our NICU, we use steroids for BPD very sparingly, reserving them for babies we think will likely die of BPD if not treated with steroids. Before giving steroids, we discuss them at length with the parents, telling them the risks and benefits, and asking their permission before using them.

Tonight when I came to work my partner was discussing steroid use with a 19 year old mother of a baby with severe BPD. After my partner signed out to me, I sat down with her and again explained it, trying to make sure mother understood. It's a pretty big decision for a 19 year old, and I feel a little sorry for her. Shortly after my arrival tonight I had seen her on my way to the cafeteria, flirting with a security guard, a pretty normal activity for a woman her age (although it seemed a little paradoxical, since she had just given birth three weeks ago.) A few minutes later we were talking about her baby's chances of death and cerebral palsy.

I'll have to live with the results of the steroid decision until the baby goes home; she'll have to live with it all her life.

P.S. A very creative new Grand Rounds is up at Urostream.


Blogger Flea said...


I thought "exceptional circumstances" was code for "virtually never".



1:33 PM  
Anonymous Anonymous said...

Oh this is a can of worms. Sure, cerebral palsy is bad enough, but the best data indicates its both dose and timing dependent. The earlier you give them, the higher the dose and the longer the duration, the greater the neurodevelopmental impact - so you have some modicom of control, some ongoing responsibility to strike a balance between the temporary benefits you get in lung function and the long term effects you'd like to avoid for life. But you don't mention my favorite disease, spontaneous intestinal perforation, which although it seems to be extremely timing dependent (i.e. in the first week or so of life) has no dose or potency effect that we can discern and has an 18-47% mortality rate in infants under 1000 grams depending on which data base you look at. Steroids muck with the developmental sequence for every endodermal and ectodermal tissue type: e.g. lungs, brain and intestine. Its just another one of the things we use all the time that we don't have a clue how it works. We don't for example know what gene's are actually the genes that the steroid receptor uses to change cell fate. It turns on or ramps up so many genes that we can't tell which one are actually the ones that irreversibly change the cell's identity for the long run, versus those that just change protein expression temporarily. You'd think after all these years, we'd figure that kind of stuff out. Nope. And its a damn shame because if we knew we could probably design smarter drugs. Probably more than you wanted to know, but one of my sore spots.

PS: Check out our new Ad for my book on NHS Blog Doctor (lower right corner with the Da Vinci picture). Very proud of that.

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Blogger neonataldoc said...

Thanks, guys: Yes, steroids certainly are a can of worms. Flea, I guess I use steroids almost, almost never. The studies showing neurodevelopmental outcome problems, as alleded to in cherub's comments, were mostly done using high or early doses. I'm pretty sure there is a subset of babies in whom the benefits of using a short course of steroids at a low dose will outweigh the risks. We just have to figure out what that subset is and when the best time is to give them.

I freely admit that I need docs with M.D. and Ph.D.degrees, like Flea and cherub both have, to explain the fine points of how steroids work. We could talk a long time about steroids, but I want to keep this a lay-person-friendly blog if possible, so I'd better stop here.

5:47 PM  
Anonymous Anonymous said...

I apologize for turning the topic into a symposium. Steroids have been a career focus for me (search Gordon PV on PubMed for street cred.). Will try to stay on the humanism side of medicine with any future comments.

10:13 AM  
Blogger Becca said...

It seems to boil down with this...

At some point, with some babies, it appears that you end up with a choice between:

a) Will probably die if not given the steroids


b) May end up with cerebral palsy but probably won't die.

Now, I'm way over on the social side of disability perspective, as a disabled person and rights campaigner myself, but surely a choice between parenting a (not necessarily terribly severely) disabled child or visiting a tiny gravestone is really quite an easy choice?

My friends with CP have degrees, boyfriends, wives, children. Houses, mortgages, cars and driving licenses. Powerchairs and communication aids, walkers and crutches, personal assistants (aides) also, yes... but in this technology-happy urban world are none of us really independant of gadgetry or the support of others?

Obviously, although I'm comfortable in my disabled body, most parents seem generally to prefer not to have a disabled child... but that doesn't tend to mean they'd rather have a dead one than a disabled one, does it?

I do hope not.

11:12 AM  
Blogger neonataldoc said...

Cherubs: No problem. I appreciate all kinds of comments, except for that penile enlargement thing.

Becca: I appreciate the thoughts. Most of my parents now choose life with disability over death, but that's not true for everyone.

11:48 AM  
Blogger Mommy15 said...

If seem really interesting the conversation. now i have a question even though the baby is premature how can a doctor know if that baby is going to die? I'm sorry for the ignorance but in which way the steroids can affect a baby by giving the steroid?

2:39 AM  
Anonymous Carrie S said...

I'm a former NICU mom. My daughter was born at 28 weeks weighing 792 grams. The risks of steroids weren't discussed with us before they were used. She had severe pneumonia and was on an oscillatory ventilator. We just told them do whatever to save her life, that we trusted them. Nearly 5 years later she's a very active, sweet, and smart child, starting K4 later this month. No CP, no respiratory issues at all. She only has to follow up once a year with the doctor who did her laser ROP surgery.

I knew a good bit about steroids. I'm a medical transcriptionist, and my husband works in nuclear imaging. I've used steroids my entire life for both childhood asthma and eczema that still persists.

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