My daughter’s niece (child of her husband’s sister) died today at age 2 1/2. She was born without a working kidney. Her kidneys were removed, and the past 2 1/2 years have been a continuous effort to get her to the point of receiving a kidney transplant. I think she spent her first year in the hospital, she has been on dialysis since day 1, and I could not estimate the number of major surgeries she had. She died after a series of surgeries and a week in PICU.
I feel very sorry for the parents and all of the family who were involved in the child’s care. And I will never say anything other than that I am sorry for their loss. But I have difficulties getting my thoughts around how I feel about this young girl’s short life. Basically, was it a good thing that medical technology kept her alive for 2 years? At what financial and emotional cost? I’m pretty sure I heard my daughter say that the parents had said that if they had known early enough of the magnitude of the issues, they would have aborted the fetus. Now, they and their entire family is in deep mourning.
I’ll never discuss this with the parents, but I wonder if they feel they are better off for the last 2 years. I cannot imagine the stress this young couple experienced. Would it have been worse if the infant had been allowed to die soon after she was born? I wonder what the doctors told them - or should have told them - about the realistic possibilities of the child living what quality of life. I have no idea what the financial burden on the young couple was. Is there a positive turn to put on what they experienced over the past 2 years?
I know I lack compassion compared to many/most, so I truly welcome hearing how other people perceive such a situation.
I’m still reeling from something I heard on NBC News this evening. A reporter actually asked the (step?)mother of the little girl who was (probably - he hasn’t been convicted yet) kidnapped and murdered by a FedEx driver - who was delivering one of her gifts, no less - what Christmas was going to be like without her. I almost vomited, something I very rarely do anyway, and still haven’t gotten my appetite back.
Did your niece have Potter’s syndrome, or do you know? Hugs to you, and them.
It’s very hard to weigh what should or shouldn’t have been done. It sounds like the parents and doctors thought there was hope of a transplant, but it never happened.
If the child was in terrible pain and suffered for two years for naught, that would be one thing, but if the child felt loved and had anything resembling a normal life, being on the dialysis machine notwithstanding, perhaps that makes it worth it.
There is no right or wrong if everyone did their best to try and save this child, and two years of life is probably better than none.
It’s easy to judge from the outside looking in. I don’t have children myself but I would imagine you’re pretty heavily invested, both financially and emotionally, long before the baby is even born.
I don’t know what Potter’s is and, to tell the truth, whenever they told me about it (they were very open) my brain kinda froze up. The magnitude of what was being done was beyond my ability to make sense of. I always doubted her ability to ever live many years of much quality life. And, being a discompassionate jerk, I do find myself at times questioning how much effort and expense any one life is worth.
I wonder how I would feel, if I were in the parents’ shoes. Considering all of the factors, would it have been better to go through what they did and are, as opposed to having a child pass soon after birth? What were the gains and losses of basically dedicating their existence to managing their child’s healthcare, only to be heartbroken after 2 years? I would really like to know what the doctors really thought about the chances of success, and the costs associated.
She definitely did seem much like a “normal” toddler - tho somewhat behind developmentally, and with a feeding tube, pets, etc. I have no idea what she perceived about the many medical procedures and recoveries. It is hard to tell if people viewed her through a filter of what the expected of someone who was going through what she did.
I would have nothing but sympathy for them. It’s a hellish situation to be in that they never asked for wrought with many conflicting emotions and choices with no right answers. It’s something that will effect them for the rest of their lives.
We had premature twin girls 17 years ago that lived for only 20 days. That mentally wrecked me and it was only a couple weeks. I can’t imagine dragging that out for 2-1/2 years. You simultaneously are relieved when its over but racked with guilt for feeling that way.
Its just a messed up situation.
I never even had kids so I can’t begin to imagine the pain the parents are feeling. I am so sorry for them. If the thoughts of a complete stranger mean anything, let them know someone like that is thinking of them and hoping they get through this.
Sorry to hear it Hampshire, that really sucks. Dinsdale, you too.
I think it’s very easy in such situations for outsiders’ feelings of helpless dismay to morph into indignant “there oughta be a law”-type energy. “This is SUCH an awful thing and it should NOT have been ALLOWED to happen in the FIRST place.” That doesn’t mean you don’t have normal human compassion, it means you hate the suffering they’ve been through and you have fixit-itis.
The thing is, there was some hope about the situation. There are children, sometimes very young children, who receive organ transplants and go on to live decent lives. The problem is, when a child is born such as this one no one can be sure that such a child will be a lucky one able to get a transplant and which ones never will.
Regardless, losing a child to death is incredibly painful and, from what I’ve seen, age doesn’t change the grief that much. Losing a child at birth or shortly after as @Hampshire posted is horrible. Losing a toddler is horrible. My parents lost a child when she was an adult and it was horrible. One of my sisters has outlived both her children and it was horrible both times. It’s not that losing them at a particular life stage is better or worse, it’s just different.
But even a life with pain and suffering can have value to the person affected. My spouse was born with a birth defect, spent much of his childhood in hospitals, had many many surgeries, and lived all his life with one degree or another of chronic pain and disability. He also did many wonderful things, had happiness as well as suffering, and hoped to grow old with me. Despite the pain, suffering, and medical crap in his life he very much loved being alive. In other words, how the person affected perceives their life may be very different than how you perceive it.
You are compassionate enough to ask the question and explore your own feelings about it and you clearly have deep sorrow for all involved. That’s a lot more than some people manage.
I can’t comment on the specific situation. It is a terrible thing to lose your child in any case but depending on the circumstances of the illness and the quality of life involved then yes, it is perfectly reasonable to be conflicted about bringing that life into the world and persisting in keeping someone alive whilst suffering in the hope of some medical miracle.
There’s a whole area of medical ethics devoted to such cases and it isn’t one I explore too deeply simply because I couldn’t handle it emotionally but I am glad that others do.
I don’t wish to be all utilitarian or to advocate euthanasia or anything so drastic, but is it in our society’s interest to allocate that amount of resources on what was - in all likelihood - a lost cause? Who paid how much for those 2 years? (Of course, it is nigh impossible to assess what any medical care “costs.” The only relevant number is what providers can collect from whatever source, or write off, in any particular case.) Did the efforts advance medical science/care? Personally, I feel far too much is spent on medical care in many situations at the very beginnings and the very end of life. Just because medical science CAN do something, does not IMO mean they OUGHT to. I would be interested to hear how the medical ethicists’ viewed this situation, or how the situation was presented to the parents.
And I wonder about the emotional cost to the parents and immediate family. What they REALLY feel. My impression was that they always presented a very positive outlook - whereas from my more distant position, I always feared/expected the worst. I presume that to some extent they were intentionally assuming a perspective that was more sustainable for them. I wonder how the “hope” the parents relied on can be weighed against their ongoing, present, and future stress and grief. Not to mention any financial and opportunity costs. 20 years from now, will they think they were better off for spending 2+ years in this effort, as opposed to having been able to do any number of other things - including possibly trying to have another child?
Thanks all for any positive thoughts directed my way, but I really don’t feel them needed. I like the parents, but see them only a couple of times a year. I care to the extent people I DO care considerably for - my daughter, SIL, and granddaughters - cared very much for the parents and child. Me, I’ve always viewed this more - um - intellectually than emotionally, in the manner of a case study of medical ethics and the allocation of societal resources.
I also tend to question persons who describe positive results from having had some horrendous experience. In some instances I wonder if that is how they really feel, or something they have convinced themselves to feel and portray for countless understandable reasons. And when so many people say positive things like, “They has 2 years of love” or whatever - I wonder how many of those folk are really trying to deny that they actually feel it would have been better if the child never lived or died quickly.
Thanks for engaging in this gloomy discussion on this dank and gloomy day here in Chicago.
I guess I too often find myself questioning the outward appearance of seeming platitudes of the “They are in a better place” sort. And, one of the benefits of being a diehard Atheist is that, even if I feel there is little point to life, I feel it is the only one I’ll get, so I will continue to make the best of it I can. Until I decide it is no longer worth it.
This is a really hard one and I don’t know what choices I myself would have been making if in the position of the parents – or for that matter if somehow in the position of the child but able to understand the situation.
I will say that I think the family should have had access to the full range of medical possibilities, including the surgical et. al. interventions but also including palliative care only, without criticism from others as to their choices as long as those were made while taking into account the best medical information available to them at the time.
There’s a poster here with a daughter whose condition would have been an early death sentence, but care has advanced enough in her lifetime that she made it to adulthood, and and in fact just recently new meds have greatly improved her prognosis for the future. You can’t just use an algorithm in a lot of cases to decide who to quit on.
When my father finally died of pancreatic cancer after three months of what, to his perception, at least in the beginning, when he could still communicate, was an erosion of his dignity, I completely understand. The last two weeks, my prayer was “If it can’t get better, end it quick.”
So whenever it happens, those feelings can come up. {{{hugs}}}
I remember what it was like the first time I was going to be a dad. It was weird because this kids was months away from being born yet it was already my kid. I already had a daughter. By the time she was born, I already had time invested in thinking about her and caring about her. In my mind and heart she didn’t begin to exist when she was born, she existed before then. It was the same with my second daughter. That kind of investment is difficult to give up on. When my second daughter was born she was in NICU for a week (it turned out to be for something silly, not serious, but it was still scary). There’s something in us that makes it difficult if not impossible to give up on a child. I think it’s one of the big reasons why we are able to survive as a species; we put so much in the well-being of our children, often beyond reason, because there’s a drive in us to do so.
I don’t think you’re a jerk for thinking this way. You’re being rational, and that’s not bad. And you can be both rational and compassionate. They’re not mutually exclusive. I think that’s why you are conflicted, it’s because you’re both.