Downs Syndrome.

G. Winslow: Are we doing ethics yet? That’s the real question. There’s a case that you can tell me
about and tell each other about. It’s number eight on page seven of this handout. But in case you don’t
have that sitting right in front of you, what I’d like to do is just review the case a little bit. Dusanka
[Hristic] was reminding me that I’ve had an approach to thinking through cases that I’ve kept for many
decades. I’ve changed it a little bit. I’m going to change it right before your very eyes now, Dusanka. I’ll
alter it a little bit. Here’s the case:
Baby Doe was born with Downs Syndrome. Downs Syndrome also known as Trisomy 21. It’s not at all
hard to detect prenatally. In fact many fewer of these babies are now being born because of prenatal
diagnoses. The Trisomy is very easy to detect. It’s a whole additional chromosome on chromosome 21.
You get two pairs on each of 23 chromosomes but here on 21 there’s an extra. And it leads to a whole
bunch of bad things, not really described much here, and we can talk a little bit more about that. But
here, as the case is described: there’s an esophageal tracheal fistula. That just means that, there’s a
problem here (tapping on chest), probably right about here (tapping on throat), a fistula, meaning that
they’re grown together. This is actually fairly easy to fix surgically. A pediatrician who is a surgeon, a
pediatric surgeon, could probably fix this without a lot of difficulty. So should it be fixed? Should
Downs Syndrome have any bearing on whether the surgery is done? Without the surgery, the baby is
not going to live. Should the infant’s parents be the decisive voice in deciding whether or not she will
receive the life-saving surgery? If the parents cannot agree, who should decide?
As it turns out, this is a very old case from 1973. There’s actually a film about it. The parents in this
particular case were objecting to doing the surgery, and that was because they didn’t want to have a
Downs Syndrome baby. Now in that framework for ethical decision-making I want to just… I think at
first we have to “clarify” or get clarity, and I used to call that “analysis,” I think. But really, what more
would you need to know about this case in order to be able to make an intelligent decision? Do you
have any questions about it? We need to settle that a little bit before we do the next step, which is
what I want to have you do in pairs. Anymore you need to know about the case?
Carolyn Ramsey: It says, “…was born with,” so what’s the age of the child now?
G. Winslow: Within the first few days.
CR: Okay.
G. Winslow: Yes, this baby is in the hospital, in NICU–
CR: Okay–
G. Winslow: A neonatal intensive care unit, and we’ve got to do something here soon, because,
especially as this case was unfolding, you can’t do TPN or something long-term here.

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