Frontiers of MedicineCliff -- Friday, May 13, 2011 -- 05:20:58 PM
This thread will host discussions of new, cutting-edge, possibly experimental medical treatments. In time, it should be interesting to see which ones made the grade and became commercially and medically viable, and which did not.This thread is tagged:
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That's weird - because the link for the second place getters actually says the opposite - they used gelatin to make an antifreeze(!) for ice cream. Consider me unimpressed - I have not been bothered by ice crystals in my ice cream and think the concept of 'antifreeze' in ice cream is completely unnecessary. But best wishes to the team working on CF.
I haven't seen any 21 or 22-weekers, but routinely examine neonates born at 24 weeks. They survive (mostly) but are in for a long stint in the NICU and lots of interventions. It will be interesting to see what these kids are like in 20 years
Never mind 20. How much will they have cost taxpayers after just 10 years?
For the layperson - Christopher was 1 pound, 5 oz which would be 5 sticks of butter and a couple of those butter pats on papers that we used to have for school lunch. He was 11.5 inches long which is just about a finger width longer than a piece of paper.
He was born at 28 weeks and 2 days because ultrasound showed he was the size of a 22 / 23 weeker and the drs thought he would do better with direct observation and drugs, white male, no steroids before birth. He spent the first 6 weeks on a respirator and 16 weeks altogether in the nicu. He came home on an apnea monitor but no oxygen. And appointments with a pediatric urologist for the hyperspadea, pediatric surgeon for the double hernia, pediatric gi for checks on possible liver damage because of the special gloop he was fed, pediatric pulmonologist for lung scarring from the respirator and pediatric opthomologist for possible eye damage from breathing air with high oxygen content on the respirator.
Chris just turned 8 this last Monday and today was the last day of 2nd grade. We are EXTREMLY lucky that he did not have any brain bleeds. When he gets a cold I have to be careful it does not descend into his chest. He had csv [a cold virus] that developed into pneumonia and a 6 day intensive care visit when he was 21 months old. He also had pneumonia when he was 4 for a 3 day regular hospital admitance.
The other lasting effect that I see is that he acts immature for his birthdate. If you look at his behaviour as being from someone 3 - 6 months younger it looks normal. Otherwise he acts / is a lot like his 16 and 20 year older half brothers.
And my sunshine boy still loves to be snuggled :)
Chris was eligible for medicaid and ssi for his first 5 years [we live in GA]. I paid his premiums for his primary insurance (GA - BCBS). Medicaid paid for his co-pays and his deductibles. SSI gave him $30 a month.
According to the statement of benefit that I received the hospitals / drs charged about 1 mil in his first year, most of that in the first 16 weeks. Second year was about 30K with most of that being the IC with pneumonia.
Since he turned 5 I pay for all his medical premiums, co-pays, deductibles and prescriptions.
That's pretty expensive, but he was born at 28 weeks. 28 weeks usually have some health problems, but nothing like 24 weeks.
And look, I understand that every parent wants to keep their child alive no matter what, and of course I'm sure I'd be like that, too. But it's not just that the costs are exorbitant healthwise. Many of these children end up in some sort of pretense of attending public school, at hundreds of thousands of dollars a year, and all sorts of other associated costs.
Doctors have to learn to say no.
I have posted before about my grandnieces who were 11.5 oz and 1.5 oz when born. I hope to God my niece doesn't have anymore children. I visited for the first time in March- the oldest walks, obviously understands words, but has nerve damage that makes it hard for her to talk (when she cries it's very soft), glasses- I think she is legally blind in one eye, can eat only thickened purees. The girls both have a therapy schedule that requires my niece and her mother to handle. I don't know what will be the long term outcome.
"Doctors have to learn to say no."
OK. First, however, give them the legal right to say no and immunity from prosecution when saying no overrules the wishes of the parent(s) and results in the death of an otherwise viable infant who would be left with severe, lifelong disabilities.
That's a big order. But yes, that's what would have to happen.
We are driven, the majority of us, to preserve the life of our offspring, and I believe doctors are as driven to preserve the life of their patients. But as technology increases, the lines blur as to what is considered viable to live.
One thing that interests me is that screening tests for disabilities are now routine, and have become part of the standard of care for pregnant women. Many women (in Canada, what I know about) choose to abort if their fetus is abnormal in some way, such as for Down Syndrome, and many of these abortions take place (again in Canada) at 20-24 weeks. While the purpose is to give families more information about their child -- and women for the most part very much want to participate in prenatal screening -- but the underlying purpose of it is to give families/women a chance to abort a disabled child. (Is this the right point to interject that I'm adamantly pro-choice? I am.) Many women and families give the reason that they don't feel they could adequately support a disabled child, in terms of emotional or financial care.
However, babies who are born at not such a different gestation length cost huge amounts of money (generally paid for by the province) and some go home with profound disabilities -- some of the same disabilities that the same women and families were trying to screen out when they had an 11- or 13-week screening, and may have gone on to abort if they'd had a trisomy baby rather than a premature baby who is spastic/deaf etc.
I'm not saying any of this is wrong -- it plays out the way it plays out -- but it does give me pause for thought, about how we select different disabled populations.
I agree, Cliff--and Patience, that's a great point. A Down's syndrome child has a much better shot at life than these kids do--and for a lot less money. Yet women abort them routinely at the same age that other kids are being saved at the long term cost of millions.
I know some people whose youngest daughter has Wolff-Hirschorn syndrome. They both have high-paying jobs, good insurance plans, and have worked like heroes, with the help of both their families, to maintain this little girl, who is middle-school age and is somewhat sentient--but she has never spoken, never eaten normally; her other bodily functions are impaired as well. She has various walkers and other vehicles by which she sort of gets around, but most of the time, they carry her around as if she were Charlie McCarthy. (She is very stunted in her growth.) On top of that, they have managed it so that the life of her older, normal sister hasn't been subsumed to her younger sister's needs. But not everybody has the resources they have, and so a kid born into their family like that wouldn't necessarily fare as well. Me, I wouldn't have had that child--I believe that she deserved to be born into better circumstances.
I don't think you can put a limit on preemies if we're going to keep trying to save people's lives who have, say, severe car accidents and head injuries and whatnot. It's a fine line to euthanasia from there. And I think throwing abortion in there is a red herring; the lives of someone who's been born and a fetus aren't at all the same (interjection: I am also adamantly pro-choice).
I don't think I'd like to live in a society that didn't give every (born, independent) life as much of a chance as possible, whatever the age.
I don't know what to say or do. I strongly believe that heroic efforts to save a barely-viable fetus are in the long run not kind or loving, and in the here and now economically ruinous. But I also believe that medical Hail Marys are undesirable for older people too--it seems like the unintended complications and consequences make heroic intervention a fool's errand.
But if anybody breathes a word about "rationing" health care (e.g. not doing wildly expensive procedures that have a very low probability of success as defined by quality of life) all hell breaks loose.
There is a stigma attached, I think, to admitting or asking if a person is in a medical situation that calls for the end of life-saving procedures. In my personal life, when my mother was on life support there came a time when I asked other members of my family how much longer we were going to continue life support, considering the situation. Everyone in the room gasped, they were appalled. I said it. I know they must have considered it too. But people feel bad about themselves if they don't fight, don't do everything possible and I can only imagine it's more so if it involves a baby, not someone at the end of their life.