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Monday, April 21, 2008

Hallie and Olivia's chances

As many of you know, the New England Journal of Medicine just published a study concerning the prediction of outcomes for the very smallest preemies, who were born at gestational ages of 22 to 25 weeks from 1998 to 2003. The data they found suggested that sex (female is better), number of babies (singletons are preferable to multiples), size, and whether the baby or babies received antenatal steroids (generally, two shots of betamethasone are administered to moms in pre term labor to help mature the lungs of the fetus or fetuses prior to birth; these need 24 hours to work) are as important as gestational age, which can be wildly off (though it was not in our case because Hallie and Olivia were conceived using IVF).

NICHD Neonatal Research Network (NRN):
Extremely Preterm Birth Outcome Data

Based on the following characteristics:

Gestational Age (Best Obstetric Estimate in Completed Weeks): 23 weeks
Birth Weight: 590 grams
Sex: Female
Singleton Birth: No
Antenatal Corticosteroids: Yes
Estimated outcomes* for infants in the NRN sample are as follows:

Outcomes Outcomes for All Infants/Outcomes for Mechanically ventilated infants
Survival 34%/43%
Survival Without Profound Neurodevelopmental Impairment 22%/28%
Survival Without Moderate to Severe Neurodevelopmental Impairment 12%/16%
Death 66%/57%
Death or Profound Neurodevelopmental Impairment 78%/72%
Death or Moderate to Severe Neurodevelopmental Impairment 88%/84%

* These estimates are based on standardized assessments of outcomes at 18 to 22 months of infants born at NRN centers between 1998 and 2003; infants were 22 to 25 weeks, between 401 and 1,000 grams at birth. Infants not born at a Network center and Infants with a major congenital anomaly were excluded. The first column of estimates is based on findings for all 4,446 infants in the study. The second column of estimates is based only on the 3,702 infants who received intensive care. The rate of a given outcome had intensive care been attempted for all infants is likely to be intermediate between these two estimates. Sonographic estimates of fetal weight may be used in anticipating birth weight, while assessing the minimum and maximum likely birth weight consistent with the potential error of sonographic estimates.

As you can see, Hallie's chances for survival without profound impairment were not very good. Yet she, and a lot of other babies listed in our preemie pal links, are doing relatively well. This largely goes to show that statistics do not apply to individuals, and I would be suspicious about efforts to try to make decisions on the basis of statistics as a result of this very important fact. I think that the information is useful, but can be used very badly. My own personal preference is for a wait-and-see-how-the-baby-does approach. And even then it's hard to tell: Hallie had severe BPD (bronchopulmonary dysplasia) and a PIE (basically a collapsed lung) and breathed about as well as an end-stage COPD adult breathes (which is to say, not very). She had an awful time getting off of the vent and we were not sure she would fare well breathing-wise when she came home. Yet her lungs have been extremely resilient, she got off of supplemental oxygen very quickly, and any stridor was reflux/GI related and not prematurity related (at least not directly). We expect that when we finally make it in to see the pulmonologist, that we'll be discharged, or at least reduced to annual visits. No one predicted that at all. And so it is hard to tell. The calculator doesn't make it much easier for parents who are put into the same position as we were in terms of deciding what to do for their kids, and can only be put to ill use by insurance companies and other institutions I don't particularly trust (with my health, life whatever) who might pressure parents, hospitals etc to make cost based decisions influenced by risk analyses that don't apply to actual individual cases. I certainly would fight any effort to do this, and I hope that you do, too and that, when you do, think about Hallie and all of her little cyberfriends.


Judith and Jason said...

The first few weeks we were in the NICU we asked docs for %. They never gave us anything. I am very glad they did not...Even though we lost two of our three babies. I think the % would have paralized us. Our numbers are similar to yours since Nina and her sis's were born 24 weeks 0 days.

23wktwinsmommy said...

Yikes! I didn't even consider insurance companies, and the potential for them to one day deny coverage by utilizing this tool!
It was difficult to make some of the decisions we had to, but I would much rather it be us as parents making these decisions rather than insurance companies or someone else!
Good point.

Laura said...

the bottom line is there is no hard, fast, true predictor of outcome when looking at an individual micropreemie at birth. daniel should not have taken a first breath much less cried at birth and that wee one i met last week who was kicking and thrashing and pink as could be should not have died 15 minutes later.
ultimately the family and, most of all, the baby decides the outcome. we just support them.
the numbers may suggest one thing but our kids prove there are always miracles and extra special exceptions. that is why i never trust my own experience when it comes to the smallest of my patients. when i do i often get proven wrong and well, i hate to be wrong.