My sister had premature twin girls who died shortly after birth, about a day. She went on to have 4 other daughters, but to the end of her life, 40 years later, she thought about those lost babies every day.
StG
Sometimes, one grieves the loss of what should have been more than they grieve the loss of what was.
Here’s a famous case of a diabetic child in 1919 under a medical sentence of certain death who was kept alive on a starvation diet for 3 years, long enough for insulin to be isolated. During much of that time she was too weak and starved to even get out of bed. Many other patients did die of starvation. She’d have been dead within a few months at best without the starvation diet. With insulin, she went on to live a long life.
Transplant technology and kidney treatment have advanced quickly just in our lifetime, and there’s a lot coming up the pike (the company I work for is involved in this).
This.
Chances are, at each stage, the doctors and parents had the belief that the next step should go find, and then there’s hope… only have have things turn out worse than expected.
If one of my kids had something like that, I don’t honestly know how I’d feel (beyond devastated), in terms of “might have been better to have terminated”. But the situation described could well have turned out differently.
We know 3 families personally that lost young children.
One: a toddler just didn’t wake up one morning. He spent several days on life support. It wasn’t SIDS, I think it may have been some kind of meningitis.
Another: SIDS. The parents have to deal with the fear that they did something wrong.
The third: Trisomy 13. They had not had screening etc. - and it was a horrifying, horrible surprise when she was born and they found all this out. They had to take this infant home, and let her die at home (she lived about 8 weeks). That’s the only scenario that falls into “would have aborted” - and the mother flat out said that if she had known, that’s what she would have done, and absolutely what she would do the next time around (they later had 2 healthy kids).
There’s a book about her called “Breakthrough”, which came out about 10 years ago. I believe that she may have had some minimal pancreatic function, enough to keep her alive during this time AND for the next almost 60 years, which did include 3 full-term pregnancies, and without the ability to tightly monitor her blood sugar that we have now. Because her growth was stunted, the children all had to be delivered by c-section but even by that time (early 1930s), the procedure was safer than a trial of labor.
A good friend of mine was born with a heart defect. His parents were told he would not live long. Then, their doctor heard about someone doing a new surgical procedure.
He had surgery when he was a month old. Everything went great for 35 years, then in 2018 he had to have a follow-up surgery on his heart. He’s back to 100% now.
Had he been born one year earlier, he would have died.
It’s all about emotional investment as opposed to dispassionate, logical thinking.
I could give several logical reasons why people who reach 80 years of age should no longer be given any financial/medical benefits because, on the whole, what they are giving back to society at that age doesn’t make it worth it. However, if someone I love dearly is one of those people. I’ll do virtually anything to help them live.
You’re thinking is that of the former group because you did not know the child. She had absolutely no connection to you emotionally so, naturally, you are going top consider the situation from a logical perspective. The parents of that child, however, are very much members of the latter group because of the love they had for her. In face, “priceless” would be the word I’d use to describe what she meant to them. In short, it’s all a matter of perspective.
My father had a heart attack in the mid-80’s, when he was 53. He lived through the treatment and surgery and died in 2014. His own father had a heart attack at the same age in the mid 1930’s and died. There was no angioplasty, not clot busting drugs, no open heart surgery.
I’m sure glad to live in the now, not the so called good old days.
Yes. One of the few few stirring moments in the I, Robot movie was when a robot rescued Will Smith’s character from a car-crash drowning at the expense of the 12-year old girl beside him because he had better odds of a successful rescue.
I remember that!
Is it lacking in compassion or facing reality to ask if the financial cost of medical care in such instances is worth it? Money is a very significant factor in whether or not people receive life-saving medical care. Did those parents have health insurance? Would the surgeries, etc have been an option if they didn’t? People die all the time because they can’t afford medical care. And insurance companies certainly consider the financial cost.
While the emotional cost of such experiences is huge, in many cases so is the reward. That’s hard to grasp from outside, especially in our society where a life of ease & convenience is considered making it, but life can be very difficult AND rewarding. Maybe they felt that 2 ½ years with their daughter was worth it, that she enriched their lives, or shaped them in ways that will last forever . Maybe they would have aborted to save themselves the tough times, or maybe to save their daughter the pain & suffering. Or possibly some of both.
For every story like this one, I suspect there are more stories about parents in similar circumstances deciding to let the child die at birth. And I suspect that decision leaves the parents with a great deal of pain & questioning also. We don’t hear those stories, of course, unless someone adopts the child as a cause & makes a public & legal appeal to overrule the parents.
Like you, when I hear stories like this one, I wonder if it’s worth it. But I can’t imagine anyone but the parents making that call. And I have nothing but compassion for someone who has to make such a decision.