I had spoken to this mother prenatally about a month earlier, after her baby had been diagnosed by amniocentesis with trisomy 18. At that time she said she wanted everything done for the baby. Tonight, after the baby was born and they had a chance to hold the baby for a good while and see her, I talked to mother and father again. After congratulating them and telling them the baby was cute (because she was) and inquiring of the baby's name, I told them the baby unquestionably had trisomy 18. I told them the grim statistics about trisomy 18 and that many of these babies simply stop breathing and pass away. We discussed what they wanted done should that occur, and mother emphatically said she wanted everything done, including intubation and mechanical ventilation, including an IV if needed for hypoglycemia.
When she said that, I just felt very tired, and not only because it was 2 a.m. I was tired of having to discuss this with parents; I was tired of the parents trying to disbelieve the truth about their baby, tired of them not wanting to deal with the hard questions, tired of them not seeing my point of view, which is that we should allow nature to take its course in these situations. I've seen babies with trisomy 18 before, and I've seen many babies on mechanical ventilation, and I just don't think the two should go together. Why put an innocent child like this through needle sticks, IV starts, the trauma of having a tube rammed down their throat when it's not going to make much difference?
I know this probably sounds terrible, to complain of being tired at a time like this. I know it's not about me, it's about the baby and her family. I know the baby is a human being, and because of that we shouldn't take letting her die lightly. But I also know I've seen this picture before and have gone through the ethical and moral questions in my mind many times, while the parents are doing so - or maybe not doing so - for the first time.
The father said to me, "It's in your hands." Ah, if only that were true.
P.S. I wrote the above at about 3 a.m., right after talking with the parents. As I read it now in the light of day, I realize it might sound a little harsh. Don't worry, we did the right thing and are treating the family and child with dignity and respect. I also should say that I respect the opinions and rights of those parents who have done everything for their trisomy 18 kids, including heart surgery; their pictures and stories of the kids as they grow give me pause. But I guess I just want to share how it looks from our side sometimes.