Research Friday: Does intervention prolong life?

Kosho T & Carey J (2016)

For our third Research Friday post, we thought we'd look at a recent paper that addresses a question that many physicians and parents often ask, and over which even more frequently disagree: does medical intervention actually improve survival in children with trisomy 18 (or trisomy 13)?

Nobody dies of trisomy 18...

When we first got the diagnosis of trisomy 18, and truly believed the predominant mythology that children with trisomy 18 are 'incompatible with life', Chris asked the fetal medicine consultant, "What do babies with trisomy 18 die of?" He got the answer that we would come to find everyone give: a shrug of the shoulders, a change of the subject, a "Well...trisomy 18," in a doubtful voice.

Keeping it Simple - Survival in trisomy 18

This is the Keeping it Simple summary - read the detailed version here.

So here you are: your fetus or newborn has a diagnosis of trisomy 18 and you ask, "How long will she live?" Your doctor tells you that it's "rare to make it to birth, but if she does, a few days; some live a few weeks"; your googling tells you that 8% live until a year; and your new online friend from the Facebook trisomy group tells you, "Don't give up hope! My daughter's 14!" (or 18 or 25), and you have no idea what on earth to say when your friends ask, "How serious is it?"

Survival in trisomy 18

This is the detailed version - read the Keeping it Simple summary here.

So here you are: your fetus or newborn has a diagnosis of trisomy 18 and you ask, "How long will she live?" Your doctor tells you that it's "rare to make it to birth, but if she does, a few days; some live a few weeks"; your googling tells you that 8% live until a year; and your new online friend from the Facebook trisomy group tells you, "Don't give up hope! My daughter's 14!" (or 18 or 25), and you have no idea what on earth to say when your friends ask, "How serious is it?"