Our son was nearly denied care because he was born at 22 weeks and 6 days of gestation. This was actually in accordance with accepted medical guidelines published in 2010, to which which we strongly objected. The doctors said the hospital had a bottom limit of 23 weeks and 0 days. In the end, they decided to “round up” and Gabriel lived. Survival without severe impairment at that stage is possible although difficult, as the following 6-second video taken two weeks ago will illustrate…
Those were the 2010 rules, and now a new set of rules has been published today! This is something my wife and I have been hoping would change for quite some time so more babies such as Gabriel could survive.
The new guidelines have only been out today, so I haven’t totally figured out what they mean. I am a Dad who likes to read medical stuff, although I haven’t been formally trained. Here’s what I can tell so far:
In the 2010 guidelines, there was this one sentence that I really, really hated:
When gestation, birth weight, or congenital anomalies are associated with almost certain early death and when unacceptably high morbidity is likely among the rare survivors, resuscitation is not indicated. Examples include extreme prematurity (gestational age <23 weeks or birth weight <400 g), anencephaly, and some major chromosomal abnormalities, such as trisomy 13 (Class IIb, LOE C).
The new guidelines don’t have that sentence any more. Yay! But does that mean it’s really “gone”? Alas, in the 30 minutes I’ve taken to write this blog post, I have not found the answer. But I might soon.
In the new guidelines, there are some other recommendations on the question of whether to resuscitate:
However, in individual cases, when counseling a family and constructing a prognosis for survival at gestations below 25 weeks, it is reasonable to consider variables such as perceived accuracy of gestational age assignment…
Our son weighed 652 grams at birth, which put him in the 97th percentile for size. It may have been a variability thing for gestational age that made him big, or it may have been that I am 6 feet 9 inches tall. (Really, I’m ok being blamed for a big baby.)
Here’s a couple of other relevant sentences:
It is also recognized that decisions about appropriateness of resuscitation below 25 weeks of gestation will be influenced by region-specific guidelines. In making this statement, a higher value was placed on the lack of evidence for a generalized prospective approach to changing important outcomes over improved retrospective accuracy and locally validated counseling policies.
I’m not sure what a “region-specific guideline” is, but I suppose if you’re a doctor in a developing country without a modern NICU available, resuscitating a 22-weeker probably isn’t ethical. Or maybe it has to do with the fact that the Japanese routinely resuscitate 22-weekers and they don’t want a set of guidelines that makes them look strange. I think “generalized prospective approach” means that a one-size-fits-all line at a specific week level does not work as well.
On the other hand, the 2015 guidelines refer back to the ghastly 2010 guidelines this way:
The 2010 Guidelines provide suggestions for when resuscitation is not indicated, when it is nearly always indicated, and that under circumstances when outcome remains unclear, that the desires of the parents should be supported. No new data have been published that would justify a change to these guidelines as published in 2010.
That first part, referring to the old suggestions annoys me because the old suggestion was “<23 wks = too immature.” The middle part about the desires of the parents supported is good. That last part about “no new data have been published that would justify a change” I must disagree with pretty vehemently as there have been two important studies showing that 22 weekers have a better chance than previously thought. One was from The New England Journal of Medicine in May, called “Between-Hospital Variation in Treatment and Outcomes in Extremely Preterm Infants” and another from the Journal of Pediatrics called “Outcomes of Infants Born at 22 weeks and 23 weeks’ gestation,” showing survival rates in the 30-40 percent range in the 22nd week.
I’ll be interested to hear what others have to say on these topics.
Also, here’s a video of a presentation I gave at the beginning of the month to a group of philosophy and nursing students about our situation: