When parents know their newborns won't live long

[kwillia]

When Jillian and Christian MacNamara found out in early 2015 that they were having twin boys, they were thrilled. But at 24 weeks, an ultrasound showed that one twin, whom they named Frank, had a severe heart defect called hypoplastic left heart syndrome. A series of three open-heart surgeries offered a chance of keeping him alive, but there was no way to know how healthy or severely impaired he might be. Without treatment, he probably wouldn’t live long after birth.

After two weeks of agonizing, the MacNamaras decided against surgery. That led them into a sorrowful frontier of modern medicine: caring for babies who don’t have long to live.

http://www.foxnews.com/health/2017/03/13/when-parents-know-their-newborns-wont-live-long.html

This article made me think of the other recent thread on here about the mother and father who decided upon organ donations in order to save other babies knowing they would lose theirs.

This article also brings up the topic of doctors providing "comfort care" rather than heroics at the wish of the family. Clearly another example of the grey area resulting from modern medicine and how personal choice does have a role in patient care.

 

[vraiblonde]

Man, how would you like having to make that decision?

 

[b23hqb]

Man, how would you like having to make that decision?

Unimaginable. The day before our twins arrived at 36 weeks (early by normal 40 week standards, but considered good for multiples), a routine sonogram revealed a potential heartbreak for us: baby #2, who turned out to be our first daughter, was feared to not have enough brain mass to survive. Fortunately, all turned out well, and she, along with her one minute older brother, are both healthy, thriving, happy, professionally successful, and providers of our three grandkids. What a relief when all turned out normal, and revealing that all modern diagnostic devices are not always accurate.

The thought of what those parents had to decide is just heart wrenching.