Please watch this video from CNN-
CNN video
I spent some time looking up both micrognathia (an underdeveloped jaw) and syndromes without a lower jaw at all (like the video). There is quite a difference despite society's obvious tendency to lump all facial anomalies together.
Micrognathia is strongly associated with Trisomy 13 and 18, both of which are lethal and which are associated with mental retardation and an 85% incidence of cardiac defects. An absent jaw, and the findings in this child, are compatible with Treacher Collins syndrome. These individuals have no lower jaw, no external or middle ears, conductive hearing loss and various secondary problems with swallowing and breathing, but are intellectually normal.
Syndromes of this kind are the type of problem that tests society's concepts of God and medical coverage. In the video the mother says, with a beatific smile, that they decided to 'let God decide' what would happen with their baby. Except they didn't. They have had 11 surgeries to date, including a tracheotomy and a gastric feeding tube. That does not sound like the will of God to me. That sounds like the will of parents, and the intervention of a very sophisticated, and a very expensive, health system.
Did the parents pay for any of this? No, of course not. Although the issue of payment for care was not raised in the video I think we can be certain they paid for none of it. We did, via Medicaid or Medicare. For most infants with chronic conditions like this, and for most infants who have a long stay in a NICU, Medicaid or Medicare are brought on board to pay for the care.
On the one hand I am all for this. This is exactly the sort of life, work and relationship destroying medical problem where societal coverage eases an unsustainable burden. On the other hand, society can not pay for everything for everyone always. A child with this number of handicaps will require lifelong care and extensive surgeries of the most specialized type. It is a fair question to sak what return on cost society will get for paying for all this.
This question is all the more appropriate when normal intelligence is involved. If this child had Trisomy 13 she would be long dead, and there would be no debate about care coverage. But this child is of normal intelligence, and via implantable hearing aids has the chance to hear normally as well. So we, collectively, must ask, what is the cost we are willing to pay for an individual life?
That is a terrible question to ask. The intrinsic and immediate answer is that life can not be quantified in monetary terms, that we should do all we can for any living person. We all feel that way, or at least we all should feel that way. But we all make judgements about life in monetary terms, whether we notice it or not. The very simplest, done every day, is valuing a person in terms of a salary. No one believes Peyton Manning is an intrinsically more important human than a janitor, but Manning makes a janitor's yearly pay every single day.
We give monetary value to life when assessing damages in court for death or injury. This seems easier morally, because the money is a compensation for wrong, not a valuation for existing normal life. In a very crude sense we have measured the monetary value of a life when buying slaves, but no one does this any more.
In a time when our society has decided that health care is a societal right, we will have to decide what a life is worth. This child has received well over a million dollars in care, likely more than 2 million dollars. In social terms, that is a lot of healthy care, a lot of vaccines, a lot of deliveries, all to keep alive one person with a autosomal dominant, and therefore inheritable, genetic defect which will require millions more in surgery and care.
We can sidestep this issue if we make all care privatized, but we have decided that is too cruel (it is too cruel). The moment society pays for care it is the responsibility of society to decide what care for which it will pay. It is monetarily and morally irresponsible to duck that duty by simply saying we will pay for everything. We can't do that, and therefore we must choose.
That is the province of God, but we have usurped it.
It is so appealing to take care of everyone's problems, until you have to choose how to do it and how to pay for it. This child is a sad but intense example of the problem. We as a society chose socialized care. Now we have to face the hard choices that come with that.
Ted
CNN video
I spent some time looking up both micrognathia (an underdeveloped jaw) and syndromes without a lower jaw at all (like the video). There is quite a difference despite society's obvious tendency to lump all facial anomalies together.
Micrognathia is strongly associated with Trisomy 13 and 18, both of which are lethal and which are associated with mental retardation and an 85% incidence of cardiac defects. An absent jaw, and the findings in this child, are compatible with Treacher Collins syndrome. These individuals have no lower jaw, no external or middle ears, conductive hearing loss and various secondary problems with swallowing and breathing, but are intellectually normal.
Syndromes of this kind are the type of problem that tests society's concepts of God and medical coverage. In the video the mother says, with a beatific smile, that they decided to 'let God decide' what would happen with their baby. Except they didn't. They have had 11 surgeries to date, including a tracheotomy and a gastric feeding tube. That does not sound like the will of God to me. That sounds like the will of parents, and the intervention of a very sophisticated, and a very expensive, health system.
Did the parents pay for any of this? No, of course not. Although the issue of payment for care was not raised in the video I think we can be certain they paid for none of it. We did, via Medicaid or Medicare. For most infants with chronic conditions like this, and for most infants who have a long stay in a NICU, Medicaid or Medicare are brought on board to pay for the care.
On the one hand I am all for this. This is exactly the sort of life, work and relationship destroying medical problem where societal coverage eases an unsustainable burden. On the other hand, society can not pay for everything for everyone always. A child with this number of handicaps will require lifelong care and extensive surgeries of the most specialized type. It is a fair question to sak what return on cost society will get for paying for all this.
This question is all the more appropriate when normal intelligence is involved. If this child had Trisomy 13 she would be long dead, and there would be no debate about care coverage. But this child is of normal intelligence, and via implantable hearing aids has the chance to hear normally as well. So we, collectively, must ask, what is the cost we are willing to pay for an individual life?
That is a terrible question to ask. The intrinsic and immediate answer is that life can not be quantified in monetary terms, that we should do all we can for any living person. We all feel that way, or at least we all should feel that way. But we all make judgements about life in monetary terms, whether we notice it or not. The very simplest, done every day, is valuing a person in terms of a salary. No one believes Peyton Manning is an intrinsically more important human than a janitor, but Manning makes a janitor's yearly pay every single day.
We give monetary value to life when assessing damages in court for death or injury. This seems easier morally, because the money is a compensation for wrong, not a valuation for existing normal life. In a very crude sense we have measured the monetary value of a life when buying slaves, but no one does this any more.
In a time when our society has decided that health care is a societal right, we will have to decide what a life is worth. This child has received well over a million dollars in care, likely more than 2 million dollars. In social terms, that is a lot of healthy care, a lot of vaccines, a lot of deliveries, all to keep alive one person with a autosomal dominant, and therefore inheritable, genetic defect which will require millions more in surgery and care.
We can sidestep this issue if we make all care privatized, but we have decided that is too cruel (it is too cruel). The moment society pays for care it is the responsibility of society to decide what care for which it will pay. It is monetarily and morally irresponsible to duck that duty by simply saying we will pay for everything. We can't do that, and therefore we must choose.
That is the province of God, but we have usurped it.
It is so appealing to take care of everyone's problems, until you have to choose how to do it and how to pay for it. This child is a sad but intense example of the problem. We as a society chose socialized care. Now we have to face the hard choices that come with that.
Ted
I would love to hear what the health care system authorities in Great Britain (or any country that rations health care) would say about this case. It is a great case study that should make us ask, "Just how much are we as a society willing to pay for?" All the questions you ask in this blog are important ones to consider. Unfortunately, relatively few people want to address this issue...but we cannot ignore it forever because increasingly expensive coverage of ObamaCare/Medicaid butts heads with the increasing U.S. National debt. Something has to give: either put limits on what we as a society will pay for or else continue piling debt upon debt...with all the problems that will come from this.
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