This is kind of an exciting time to watch the consensus change on how extremely premature babies, such as our son, are treated. I’ve been watching this, wanting to write all kinds of blog posts on the topic, but I’ve been stymied by two things — one, we lost our day care. And two, we went on a week-long trip to visit relatives. So I’m kind of behind but still very enthusiastic about all of this. Now pre-school is restarting for the fall, so maybe I’ll have a little more time to write.
Back in May, a study came out that highlighted how survival rates for 22-weekers varied widely by hospital because attitudes of doctors also varied widely. It made clear that a different set of procedures is needed for 22-weekers. This old set of procedures is the same one that nearly killed our healthy son — the doctor said at first that he would not resuscitate our child because he was not yet 23 weeks and 0 days old. He eventually changed his mind and rounded up and intubated him at 22 weeks and 6 days.
Then at the beginning of the month, the American Academy of Pediatrics issued a new set of Clinical Guidelines regarding counseling of parents who are about to have a child before the 25th week of gestation, also called a very-low-birthweight infant or a micropreemie.
Some highlights from this set of guidelines that made us happy:
- It says the goal of antenatal counseling is to help parents make an informed decision regarding intervention. No argument there….
- And it says that outcomes for babies born in the 22nd and 23rd week have been improving. A study from Japan found that 33 percent of infants born in the 22nd week survived.
- It also talks about the limitations of using just gestational age as a predictor of survival. You don’t know exactly how old a fetus is based on the method of counting back to the last period. When each extra day of gestation improves a child’s survival range by 3 or 4 percent, this is a big deal.
- It says that “22 weeks is generally accepted as the lower threshold of viability.” This means a HUGE DEAL to us as we were told that we were under the threshold of viability at 22 and 6. We pray we never get in to this situation again, but it is comforting to know that families will be given a chance in the 22nd week. (An interesting addendum, though — the AAP’s guidelines for the Neonatal Resuscitation Program for 2010, which I think are still current, say that resuscitation before 23 weeks is “not indicated,” or something you shouldn’t try. I’ve been told that there will be a new set of guidelines next month which will be more flexible about 22 weekers, but they’re not available yet.)
- Waiting and seeing how the child looks at the birth is not a good idea. Stopping to decide something there deprives the child of important treatment time.
- Statistics aren’t as helpful to families as some doctors think.
But on the other hand, a number of things get left kind of vague:
- How do we define “futile” with a preemie? Is it when survival rates drop below 50 percent? The term shows up here, as it does with other texts on resuscitation. I think we can all agree that providing futile treatment to a dying patient is better withheld, but what are the standards for when it is futile with a preemie, especially when you consider that neonatologists do no better than a coin flip when predicting who will survive?
- Use of the term “moderate to severe neurodevelopmental impairment.” What does this mean? I looked it up once, and one of the things can get a child in to this category is scoring less than a 70 on the Bayley. Our kid has done that a couple of times, and it’s not really that bad — he might catch up by kindergarten.
I’m eagerly waiting for the AAP’s new guidelines on the resuscitation itself, rather than just the counseling part of it. That’s due out next month.