Peer-reviewed article
Treatment Decisions for Babies with Trisomy 13 and 18.
Many babies with trisomy 13 and 18 die in the first year of life. Survivors all have severe cognitive impairment. There has been a debate among both professionals and parents about whether it is appropriate to provide life-sustaining…
Many babies with trisomy 13 and 18 die in the first year of life. Survivors all have severe cognitive impairment. There has been a debate among both professionals and parents about whether it is appropriate to provide life-sustaining interventions to babies with these serious conditions. On one side of the debate are those who argue that there is no point in providing invasive, painful, and expensive procedures when the only outcomes are either early death or survival with severe cognitive impairment. Others suggest that, although mortality is high and cognitive impairment universal, babies with these conditions have an acceptable quality of life. In this paper, we will discuss both points of view. We will review the ways in which these conditions are portrayed in pediatrics textbooks and on social media sites that offer support to parents. We will then suggest an appropriate way to deal with clinical decisions for babies with these trisomies.
Related writing.
Why the Dutch Keep Pediatric Euthanasia Illegal
Pediatric euthanasia in The Netherlands has a unique legal status - it is illegal, openly practiced, and well-regulated. The most surprising part isn't the law that enabled this — it's what happened after.
The Tiniest Patients: Rethinking How We Decide
	When a baby is born at 22 or 23 weeks of pregnancy — half the normal gestational period — doctors and parents face one of the most agonizing decisions in all of medicine. Should they fight to keep the baby alive, knowing survival is u
When facts are not fixed: rethinking shared decision making at the margins of neonatal viability.
Parents and doctors face difficult decisions when a baby is born at the borderline of viability. Somehow, they must voice their values, shared concerns, and disagreements in a way that allows an initial decision about life-sustaining…
Survival After Court-Ordered Treatment Withdrawal
NR (as he is named in UK court documents) was born in 2020 with a malformed brain. He had, callosal agenesis, cortical dysgyria, dysplastic basal ganglia, a cleft lip and palate, and anopththalmia (no eyeballs). He was not expected to survi
About the author
John D. Lantos is a pediatrician and bioethicist writing on AI in medicine, neonatal intensive care, and end-of-life decisions. His essays appear in JAMA, JAMA Pediatrics, the Hastings Center Report, the New England Journal of Medicine, and Aeon. Read more about John.