Ethics of the twin separation

[stauffenberg]

On the news today medicine is smugly congratulating itself for 'successfully' separating two twins who shared a kidney.  The one functioning kidney went with one twin, instead of being shared between the two, as it had been up to then -- but that is no problem, we hear the proud doctors and the ecstatic parents triumphing, because the twin without a kidney will soon get a transplant from her mother, and then everything will be fine! 

What the doctors don't mention, however -- and the parents seem not to have been informed about this either -- is that the immunosuppressive drug regimin the now separate twin will have to live on for as long as her transplanted kidney functions is extremely toxic and carcinogenic, and by starting on it while still an infant, the girl's chances of dying of complications from the drugs at a very early age is extremely high.  Also, immunosuppressive drugs cause a host of developmental disorders for young children, including stunted growth, abnormal neurodevelopment and its associated brain disorders, and general failure to thrive.  Further, a well-matched kidney from a living donor can only be expected to last between 10 and 20 years, after which the child will no doubt have to spend prolonged periods on dialysis waiting for a new kidney, which the next time around may not be so well matched, or even from a non-cadaver source.  Because of increasing numbers of pre-formed antibodies with each successive transplant, the girl may well not be able to receive more than three transplants in total, condemning her to dialysis -- if she lives that long -- for the whole second half of her life or more.

And yet no ethical questions are being raised about this highly controversial surgical intervention.  If the girls had been left as they were, they would have faced a life of severe social difficulties, mobility problems, and identity issues, but they could have been essentially healthy.  But now that they are separated, one of them will certainly face a life of extremely poor health and a likely very early death, in return for greater mobility and social acceptance for both her and her sister.  I find the ethics of the choice actually made to be highly questionable.

[Sara]

I think I read somewhere that conjoined twins have a very high risk of other problems even if not separated.  I honestly don't know what decision I would make if I were in those parents' shoes. 

[Bajanne]

Most definitely a consciousness-raising issue.  However, I find it difficult to come up with a viable solution that would not be problematic.  To me, it is a case of 'damned if you do, damned if you don't'.
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[Bear]

If the girls had been left as they were,....... could have been essentially healthy.  .  I find the ethics of the choice actually made to be highly questionable.

"B#llsh*t" to the above. One kidney between 2 people is hardly "essentially healthy". Not to mention all the other issues.
 I'm happy for you that you can question the ethics...better than being faced  with the problem yourself, eh?
 I empathise with these people. Very difficult. I think I would have made the same choice, but am so glad I never had to!!
 I wish them all the best for the future.

[Rerun]

It would be a tough choice because you are right, the one left with no kidney will be facing some real issues.  Wait until the transplanted twin gets the puffy face.....well that is the least of her worries.

[Black]

We don't know what the real choices were, so we are not in a position to say what the parents, doctors or hospital should have done.

There had to be a reason why the doctors waited so long to do the surgery and a reason why they decided to do it now.  We could speculate but the fact still remains that we don't know.

The little one on dialysis and probable transplant from her mother, may be lucky enough to benefit from medical advances in 5 or 10 years which will amaze us all.  They just have to keep her as healthy as possible until then.

We should all be thankful that we were not the ones making those hard decisions and having to live with the results for decades.

[angieskidney]

Because of increasing numbers of pre-formed antibodies with each successive transplant, the girl may well not be able to receive more than three transplants in total, condemning her to dialysis -- if she lives that long -- for the whole second half of her life or more.

That is what I worried about for mySELF and no doctor or nurse will even ANSWER my question about how many transplants I could expect to have in my life..

I think they like to just "be as positive as possible" even if it means skipping around the bush and trying to get away with not stating these facts!

Most definitely a consciousness-raising issue. However, I find it difficult to come up with a viable solution that would not be problematic. To me, it is a case of 'damned if you do, damned if you don't'.

I agree with Bajanne and Bear and Black!

[sandman]

I don't envy those parents.  That has to be one of the hardest decisions to make.

[Black]

Because of increasing numbers of pre-formed antibodies with each successive transplant, the girl may well not be able to receive more than three transplants in total, condemning her to dialysis -- if she lives that long -- for the whole second half of her life or more.

That is what I worried about for mySELF and no doctor or nurse will even ANSWER my question about how many transplants I could expect to have in my life..

I think they like to just "be as positive as possible" even if it means skipping around the bush and trying to get away with not stating these facts!

Remember that the "facts" today are not what they may be tomorrow.  Medical breakthroughs are coming more rapidly than ever.  There is already a method of doing transplants where there are no antirejection drugs needed.  No one knows what you'll have available in just a few years.  One day you may be a 90 year old giving a speech about what kidney failure, dialysis and transplantation were like in the old days when it was all so primitive.

[Hawkeye]

This is definitely a very tough call.  What to do in a situation where you have conjoined twins would be a rough decision.  I think that is one of those cases where you can't really say what you would do until you are there and are faced with such a decision.

[Riki]

I've seen kids as young or younger than those twins on dialysis and get transplants and are doing very well... I know one fellow who was put on dialysis right out of his mother's womb.. they knew during the pregnancy that he wouldn't have kidney function.. not sure how... but anyway... he is about 25 now... had never had a tranplant work... think he's had 4 of them...
My point is that everyone is different.... she may last on her mother's kidney for 25 years before needing a new one... it may not work at all and she'll live life on dialysis... who knows??

[angieskidney]

I have seen babies on dialysis while I was in the children's hospital since I have had this since the reflux at birth. They are usually put on PD for obvious reasons but do well, as any of the "kidney kids" I grew up with!

[scyankee]

Having lost a son to terminal illness, I can understand that these young parents would do whatever possible to
their little girls. My heart goes out to them and the girls. A rough road for all of them. But if they can enjoy them
while they have them, well, that's the point. None of us could be here tomorrow! We enjoyed our son with the
7 years we had him. He was the light of my life.

[mallory]

Since I live in Salt Lake City, where the twins live, this has been in the news a lot.  It appears, from everything I've heard, that the parents are well aware of the risks to the twin that did not receive the kidney, but chose to move forward to give both of their daughters the chance to lead as "normal" of a life as possible.  It was a decision I would have hated to make, and I don't know what I would have done.  But, I applaud any and all parents who love and care about their children and make the best decisions they can for their futures.

[livecam]

Recently in Los Angeles the two conjoined twins of recent illegal aliens were separated at taxpayer expense.  The cost of their surgeries and followup care has so far topped 2 million dollars.  The parents entered the country illegally with the mother already pregnant.  While being treated for another condition at taxpayer expense she found out that the baby she thought she was carrying was actually the conjoined twins.  She and her "husband" decided to stay.  In addition to the expenses I already mentioned one of the separated twins requires expensive continuing aftercare...again at taxpayer expense.  The money squandered on these individuals could have helped many Americans with kidney and other diseases.  Was it ethical to assist this family? Is it ethical to continue to treat the child? The answer is a resounding NO!  Should these people be sent packing? YES and IMMEDIATELY WITHOUT FAIL.

[angieskidney]

Statements like that make me scared to move to the States. Why should I come to the States and live there and put all tax payers more in the hole with my health when if I stay in Canada it is paid for already? (sorry if this is offtopic but ... what is done is done. They parents did what they thought was best. Leave them be)

[livecam]

What you don't understand is that this is only one example.  People like them do this everyday and have made a mockery of our laws and a mess of our country.  If it was one isolated case we could let it slide...if you ever visit California you'll soon see.

[sandman]

Statements like that make me scared to move to the States. Why should I come to the States and live there and put all tax payers more in the hole with my health when if I stay in Canada it is paid for already? (sorry if this is offtopic but ... what is done is done. They parents did what they thought was best. Leave them be)

Not to put to fine a point on it but something like that can happen anywhere in the world.  You say that if I come move to Canada, I would receive free health care after 6 months, correct?  Who do you think is paying for that?  Surely not your government.  Must be the people paying extra in taxes which in turn, is used to pay for your "free" health care.  Makes sense, does it not?

See, in the US, it's people don't want to pay the high taxes so instead, it's people are forced to fend for them selves when it comes to health care.  Some states in the US DO charge a little extra in taxes to cover for limited free health care with free clinics.  Which I might add, we see over taken by big businesses all the time.

[angieskidney]

Well I find these issues don't come up in other countries where taxes pay for health care but in the States lately it is becoming a big deal where no one but Americans should get the care. So me as a Canadian is intimidated by that. The twins being separated were so they could have as normal a life as they can. So the one will be on dialysis! Doesn't seem like they had any better options. I think the issue isn't really what choice the parents made but rather who had to pay for it. Canadians do the same thing as American hospitals. In an emergency they don't turn anyone away. Yet it is only Americans who say "if you aren't an American you shouldn't get any care in our country". I mean, don't get me wrong. I am an outsider looking in and only saying how it looks. 

So ... on that note, is the ethics about the choice to care for the twins or are the ethics about how it was paid for?

[livecam]

See, in the US, it's people don't want to pay the high taxes so instead, it's people are forced to fend for them selves when it comes to health care... Many people feel they are paying too much in taxes here already.  After all we're paying for the rape and slaughter of innocent citizens in Iraq, their torture in Guantanamo Bay and in secret prisons throughout the world, paying for Israeli warplanes and nuclear weapons, paying for George Bush to campaign and vacation with a luxury 747, paying for the care, feeding, education. and incarceration of illegal aliens, and the list goes on and on.

[Black]

Well I find these issues don't come up in other countries where taxes pay for health care but in the States lately it is becoming a big deal where no one but Americans should get the care. So me as a Canadian is intimidated by that. The twins being separated were so they could have as normal a life as they can. So the one will be on dialysis! Doesn't seem like they had any better options. I think the issue isn't really what choice the parents made but rather who had to pay for it. Canadians do the same thing as American hospitals. In an emergency they don't turn anyone away. Yet it is only Americans who say "if you aren't an American you shouldn't get any care in our country". I mean, don't get me wrong. I am an outsider looking in and only saying how it looks. 

So ... on that note, is the ethics about the choice to care for the twins or are the ethics about how it was paid for?

See, in the US, it's people don't want to pay the high taxes so instead, it's people are forced to fend for them selves when it comes to health care... Many people feel they are paying too much in taxes here already.  After all we're paying for the rape and slaughter of innocent citizens in Iraq, their torture in Guantanamo Bay and in secret prisons throughout the world, paying for Israeli warplanes and nuclear weapons, paying for George Bush to campaign and vacation with a luxury 747, paying for the care, feeding, education. and incarceration of illegal aliens, and the list goes on and on.

Can we move these last two posts to another thread?  I'd like to comment, but not here.

[sandman]

Generally, your going to find that American's don't want outsiders getting emergency healthcare at the cost of the state when it's own people are forced to pay increasingly higher prices for medical insurances.  Sure, this alone is enough to piss off anyone.  But the fact of the matter is, you can get superior healthcare in the states then you can get in Mexico and Mexicans know they can cheat the system and get that care for free.  But only American's will see it one sided, thinking they have to pay for an outsiders care, which is pretty much correct.  The problem is, most American's refuse to look at it from any other perspective.

[livecam]

Right on...Americans paying taxes want to believe that those funds are for the general wellbeing of the American people and nation.  Unfortunately we're fast losing any incentive to be compliant when it comes to the taxman.

[angieskidney]

Ya we should move this to a new thread called "American Tax Dollars & Health Care" or something like that?  Or are we done talking about the twins?

[livecam]

Why?  Lets stay here and bother Black!