For constant, unremitting pain, yes. Otherwise I agree.
Still, even with a transplant, the poor baby would likely have still had a truncated, more difficult life. Transplanted organs don’t last forever, and she’d have had to have regular medical appts, blood draws, and medications, all for her entire (likely shorter) life. I don’t have an answer to whether it would have been “worth it” for her or her family…just saying that the transplant wouldn’t have solved all their problems.
Absolutely heartbreaking.
Poor baby.
I can’t have an opinion on this . It’s too close to home
My thoughts are with the family.
Dang, that hurts.
There’s no such thing as a “silly” reason for being in the NICU. She was there for a good reason, and it sounds like she’s doing OK now.
People who are affected by the death of a child, of any age, might benefit from Compassionate Friends, an organization made up of people who understand.
But it was.
When she was first born she didn’t breathe for a while. She wasn’t in distress and there was nothing physically wrong with her, she just refused to at first. Then she decided to. (She’s still stubborn to this day.) That made the staff in the hospital nervous.
They checked on her later in the day and her temperature was high so they put her in the NICU for observation as a precaution. She had no other symptoms, just a high temperature. She was 100% fine otherwise (all vitals good) and her temperature went back to normal. Meanwhile back in the room we were sweating and we realized the heater was berserk and we got someone to adjust it. Her previous high temperature was from the heat in the room. But protocol was to keep her under observation anyway.
So yeah, it was silly. She was in NICU for a week because the heater in the hospital room was too high.
I would argue it all comes down to whether the child truly had a fighting chance.
If the kid had a 50 percent chance of survival and being able to live to get the kidney transplants and live a long life, by all means, fight tooth and claw. Fight with every resource available.
But if it was like only 1 percent, then there was no real hope and it was unnecessary expense and prolonging of the end.
My son only lived for a couple of hours and it mentally wrecked me as well. That was 16 years ago so I’m long past it now, but it was difficult.
We were in a support group for parents who lost a child so I heard a lot of stories of how many different people coped or didn’t with their losses.
I don’t think you can make the type of calculations which the OP wants. Life isn’t a set of numbers.
Medical advances start with the lost causes and the utility to society is incalculable. If society has a need to save resources, there are a lot of better areas to optimize.
There’s not a day I don’t think about my daughter and I’m glad I got three years with her.
Dinsdale please do not take this the wrong way because it is not meant as a personal attack but rather a statement of fact: if you are trying to understand it all, put it in some logical or cost-benefit analysis, or just simply the emotions of the situation from the parents’ point-of-view - just stop. There is no way you can understand. And that is not hubris on my part. Losing a child is the one club no one wants to be a part of.
That’s true. It’s cold comfort for the parents, but doctors may have learned things from their daughter’s case that will save children in the future.
I think whether it was in the child’s interest is the more salient question.
A significant part of the problem is that it may be difficult to judge this in advance.
I remember a case like that some years ago. I forget the details – pediatric lung transplant? Something drastic like that – where the toddler really had no long-term hope. I don’t know if the doctors disclosed that detail to the parents before the surgery.
Thanks all. I have no idea what you - or the parents of this child - have gone through.
I still remember your son. Wasn’t his name Ian? That is the name of a nephew of mine.
I am also glad you and your wife had another after that. Sticky, sticky, that’s what we said.
And you never get all the numbers at the same time, anyway. If the OP’s niece and nephew by marriage had been told at the time of their daughter’s birth exactly what the sequence of outcomes would be over the next two years, they might have made a different choice somewhere along the way about taking some extreme measure or other. Not that they necessarily should have, but if they knew for certain sure what was coming down the pike, they might have.
But they didn’t; nobody ever does. You only ever know for sure the facts and probabilities concerning the crisis you’re in at the present moment.
You won’t be able to fully understand - but the parents will never feel that they would have been better off if their child had died at birth. No matter how hard it was , no matter what they think they would have done if they had known the end result early, no matter what they may have thought 2 years later in an alternate universe where the child did die at birth. If the child was in constant pain or something like that, I suppose it’s possible they might feel it would have been better for the child not to have lived because the child wouldn’t have suffered - but they won’t think they themselves would have been better off. I lost a child at birth over 30 years ago, and while on an intellectual level I know that it was probably for the best in many ways, I didn’t ever feel that I was better off. Because I don’t know what would have happened if things had gone differently - it might have been terrible , it might not have been so bad , there’s just no way for me to know.
Yes, thank you for remembering.
I really don’t think it’s appropriate to second guess parents and the OP and itself subsequent posts seem icky to me.
There are some calculations we don’t make. What if it had been your daughter’s sister-in-law herself and not her baby? Wouldn’t it be cheaper for her husband to just sign up for hospice care and then subsequently get an account on match.com? Wouldn’t he be better off in 20 years with a new healthy wife and not a hit on their savings?
Outsiders don’t know what the parents are going through. If a parent decides that having a shorter period (hopefully) with a higher quality of life or OTOH decides that it’s worth the efforts and financial costs to battle the illness, it seems – at best – insensitive to question their judgment.
Humans develop bonds with infants. Bonds with real feelings and real love. My reading of the OP and subsequent posts is that doesn’t seem to be taken into consideration.
I knew a woman who did sign up for hospice in large part because she had terrible health insurance. The odds of beating her cancer were low, but not zero. And she chose not to impoverish her family.
Just as it’s cruel to criticize people who chose to try, I think it’s also cruel to assume that’s the only choice. These choices are terrible, whatever way you go.
My sympathies and good thought to all parents posting here who’ve lost a child. As @TokyoBayer says, it’s not at all appropriate to second guess parents.
Good friends of ours had a child who died 30 years ago, at one month old. I’ve heard them say that they think of him every day, and every moment of his life was invaluable to them.
There’s a thread that gives a blow-by-blow account of a parent’s responses to his baby girl’s diagnosis with SMA, Spinal Muscular Atrophy; it was agonizing but ultimately hopeful. She was diagnosed at 4 months and they were told that her life expectancy was maybe 2 years, but she’s 12 now.
My baby girl has Spinal Muscular Atrophy (SMA) - Mundane Pointless Stuff I Must Share (MPSIMS) - Straight Dope Message Board
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Some people also make this decision because they feel that a quick death is preferable to having a poor quality of life, which is far too common in cancer and other serious illnesses.