AAP updates guidelines for prenatal care of babies with Trisomy 13 or 18
March is Trisomy Awareness Month, and March 18 is Trisomy 18 Awareness Day. Happy to write to you today with some good news.
Historically, when parents received a prenatal diagnosis of Trisomy 13 or 18, medical teams would tell them the conditions are fatal. If parents still wanted to try to give their children the best chance of survival, many hospitals and OB practices would refuse to provide necessary interventions (such as heart surgery) on the reasoning that such efforts would be a waste of resources. Some parents have even reported medical staff making decisions about their children’s care without informing the parents, much less getting their consent.
The medical community would offer poor care, these infants would have poor outcomes, and then doctors would point to those poor outcomes as evidence to not bother with better efforts in the future.
[Read SPL’s co-authored bioethics article Abortion and Infant Mortality: Termination Does Not Prevent Death]
For years, parent advocates alongside life-affirming physicians have worked to draw attention to this lethal self-fulfilling prophecy, and to the evidence for better outcomes (for these babies and their families) when doctors give them a chance.
I’m happy to tell you their persistent efforts are making headway, and the medical community is catching up.
In 2025, the American Academy of Pediatrics released new guidelines on caring for infants with Trisomy 13 and Trisomy 18. The report is unambiguous:
Despite previous characterizations of these disorders as being uniformly lethal, multiple studies have demonstrated improved morbidity and mortality with indicated interventions. … there are no ethical justifications for universal, principle-based differential treatment based solely on these genetic diagnoses.
Guidance for Caring for Infants and Children With Trisomy 13 and Trisomy 18: Clinical Report, American Academy of Pediatrics
The report emphasizes decision making about how to care for these children “should respect the same moral principles as applied to other children,” and clinicians should “offer a broad range of support” in the prenatal, perinatal, and postnatal periods.
There’s still work to be done. Neonatologist Dr. Robin Pierucci points out that new AAP guidance still accepts the ableist standard of offering these babies exclusive comfort care even prior to evaluating and stabilizing them. Parent advocates alongside their clinician allies will keep working to raise awareness about this issue because, as Dr. Pierucci summarizes,
Regardless of their lifespan, children with T13/18 have lives worth living, and that—not the order or number of their chromosomes—qualifies them to receive compassionate, medically excellent care.
Assessing the AAP’s New Guidance for Children with Trisomy 13 and 18, Ethics & Medics, Volume 50, Number 10
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