The Needs of the Many

I found this NPR story extremely distressing to me. LINK! A family found out via ultrasound that one of the twin babies in gestation had major deformities that suggested, at minimum, critical neonatal care and neonatal surgery would be needed. One option was to abort the infant with deformities which they chose to not do, understandable (though it meant premature birth for both babies, putting the other child at all the risks of premature birth). They had a 2 year old at home, also. Over the course of days and weeks, intervention after intervention was done while the parents hoped for a good outcome and the doctors and nurses knew that a good outcome was not possible. The baby lived 5 months, heartrending story of the family trying to do a little bucket list when they knew the child would die, what they should have known 5 months earlier.
By deciding to go forward at each step the family was deciding that one child who was ill was more important than the two healthy children they had responsibility for. I can’t really see it any other way. If you think I’m an ogre, I’m sorry. The doctors told them of the long odds (at best) and the parents kept on believing in false hope. The healthy twin, for practical purposes did not have a mother and father for her first 5 months. The healthy 2 year old at home didn’t have her mother and for 5 months. Children’s development during these months and years depends hugely on face time, physical contact and interaction time with primary caregivers. It took years for the healthy twin to ‘catch up’ (I wonder if they are sure of that).
Then, the ‘kicker’. The cost. 11 MILLION DOLLARS to keep that infant alive for 5 months. Probably negotiated down to less. Let’s call it half. Half of that 11 million dollars would cover the entire annual budget for a major directly relevant program in the San Francisco area, where they family lives: The Homeless Prenatal Program. All the work that program does to reduce malnutrition, and the associated birth defects and other issues in children, could have been covered. Not to mention, they could have just taken care of the healthy children they love.
While not precisely the same dilemma, Stacey and I had a crippling 10 days of anxiety when we learned that Madeleine was at high risk for Trisomy 18, a disorder that would likely kill her before she was born, that if born she might live a handful of days, more likely minutes to hours. That’s why we have not had a second child. Because, we see no reason to roll the dice on Trisomy 18 or the myriad related genetic disorders that we are all too likely to bring upon a child at our advanced ages. That would mortgage our healthy child’s future, and that would be, in my opinion, ethically indefensible.
I believe what this San Francisco family did was ethically indefensible, also.

One thought on “The Needs of the Many”

  1. I really don’t have an answer to this question for myself, but what do you think would have been an ethical response to learning that at least one of the twins in gestation was likely to be quite ill? When I heard the story yesterday it certainly made me stop and think.


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