Wednesday, June 15, 2005

Setting an "age of intervention" for premature babies?

There's currently a debate going on in the UK about whether to set an age limit below which doctors will not intervene to try to save babies born prematurely.

This article by Melanie Reid in the UK paper The Herald discusses the issue.

Reid says,

"[W]hat we do know is that half the babies born extremely prematurely suffer from physical or learning disabilities aged six. [sic] . . .

Latest research indicates that 46% of children born under 26 weeks' gestation suffered from moderate to severe disabilities, including cerebral palsy, low intelligence, blindness and deafness. Only one in 10 of very premature babies does not grow up disabled in some way.

One of the biggest ethical dilemmas of modern times is also one of the least discussed. If hospitals now possess the technology and the skill to keep babies born as early as 22 weeks alive--even if irretrievably damaged--then at what point should intervention be withheld? And who is to make that decision? . . .

. . . Holland has a national policy not to save babies born at fewer than 25 weeks. British doctors find this lacking in humanity and prefer to keep each case individually. In practive, they set the limit lower. Some consultants believe a 23-week limit should be set: any babies born at that age or younger which could not breathe completely and spontaneously for themselves would be allowed to die. As statistics stand, of the small minority that survive from a 23-week birth--which is below the limits for legal abortions [my note: in the UK, that is]--only one in 19 has no disability."


Reid uses the case of Charlotte Wyatt as an example of futile care. However, she grossly misrepresents Charlotte's situation. Charlotte Wyatt was born at 26 weeks gestation and was not expected to survive. She's still very ill and disabled, but has improved far beyond expected and may even be able to go home from the hospital soon. I will be posting more on the Charlotte Wyatt angle of the article, including a response from Hanna Maxson at savecharlotte.com in my next post.

One point to note, though, is that Charlotte Wyatt would have received intervention even if a 25 or 23-week point of intervention was instituted. She was born at 26 weeks gestation.

My own mother was born very prematurely, at an age which at that time the baby was unlikely to survive without disabilities. When my grandmother took her home after a long hospital stay, she transported her in a shoebox. My mother had a film over her eyes and was "supposed" to be blind, but grew up to be a normal healthy child with no disabilities.

I don't necessarily think every premature child should be rescuscitated. But I do think there shouldn't be a strict limit based purely on one or two arbitrary factors, for a few reasons.

First, statistics don't mean everything. Doctors and parents should be able to evaluate the individual situation and make a decision based on the baby's individual health, the parents' ability to deal with possible severe disability and expense, and other relevant factors.

Secondly, the age at which premature children can survive and the risk of disabilities with prematurity is steadily decreasing. If we had limits below which we didn't even try to save these babies, science and medical abilities would be hampered from advancing in this area.

Finally, who is going to make the judgement about what percent risk of what type of disability makes a life not worth saving? Remember, most of these statistics include a wide range of disabilities from needing to wear glasses to severe cerebral palsy.

Here's a summary of one of the studies Ms. Reid may have been referring to.

It says, "The study began in 1995 and followed a group of babies born extremely prematurely at 25 weeks or less (normal gestation is around 40 weeks). Initial survival rates were low and only 308 surviving children were recruited on to the study out of 1289 live births. The surviving children were assessed at 2½ and 6½ years of age.

At the 2½ year assessment, the results showed that, while 50% of the children had no disability, 25% of the group experienced severe disability such as cerebral palsy, blindness or deafness. The remaining 25% experienced lower levels of disability, including low developmental scores or the need for spectacles. The researchers also found that 46% of the group were receiving treatment for chest-related medical problems, such as wheezing, coughs or asthma.

At 6½ years the children, were assessed again. Researchers found that a similar number of children were free of disability, with 25% suffering moderate or severe problems. They also found that over 85% of those who had the most severe problems at 2½ years old still had major problems at 6½. Of more concern was the finding that over 40% were assessed as needing or likely to need help in school."


Who decides that a child would be better off dead than having a 50% chance of being blind or deaf, for example? Who is to say that it's better to let a child die than risk their [horrors!] "needing or likely to need help in school," needing to wear corrective lenses, or having athsma?

Also, we sometimes forget that even a normal birth at full-term is not without risk. For example, the organization "United Cerebral Palsy" notes that about 10% of children born at or before 25 weeks gestation have cerebral palsy, but 60% of children with cerebral palsy were not born prematurely.

Obviously, there is some point at which the risk and cost outweighs the benefit of some medical treatments. But I think this is a determination that should be made by the individual case, not by setting an arbitrary rule.

1 Comments:

Anonymous Anonymous said...

I had twins at 26 weeks and 6 days gestation. i thought i would have done anything to save both my babies but at 32 days old we turned the machine off on one of my boys. It was the hardest decision of our lives to let him go. He had several large bleeds to the brain and hyrocephalus. He was extremely disabled, blind and deaf. The doctors told us he would never be able to go home and he would be in hospital for the rest of his life if he would have survived. I wanted to keep him alive but seeing him suffer more every day with tubes down his throat and nose and in his arms and feet i knew i couldnt let him go through it anymore. I think it should be the parents decision wether to resuscitate a premature baby. They should be told the problems and complications that could happen and then see if they could cope with the possibility of having a severely disabled child.

1:38 PM  

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