Canadian family fights to move baby on life support to U.S.

[alp227]

Source: CNN

(CNN) -- A Canadian family fighting to keep their 13-month-old son on a breathing tube says they have been denied a request to have him transferred to a hospital in Michigan.

Moe and Sana Maraachli refused to sign consent when Canadian health officials determined their son Joseph, who suffers from a progressive degenerative neurological disease and was in a persistent vegetative state, should be removed from life support. Joseph is being treated at the London Health Sciences Centre in Ontario.

The Maraachlis reached out to the Children's Hospital of Michigan in Detroit in hopes of having their son transferred there for continued care.

Family spokesperson Sam Sansalone said the hospital initially agreed to accept the transfer. He said he has since received an email indicating the request has been denied.

Read more: http://www.cnn.com/2011/HEALTH/02/24/canada.health.dispute/index.html

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I posted earlier that .

[Wickerman]

1. Don't mean to sound callous, but what part of

"progressive degenerative neurological disease and was in a persistent vegetative state" does this family not get? The kid is done. Let him go out with a little dignity. I am, admittedly, the King of denial, but in this case the family has a lot of people helping them understand they are only prolonging the inevitable, and for zero return.

[sharp_stick]

2. It must be incredibly difficult for the parents

As a father of three young kids I can attest to the fact that most parents would do _anything_ for them.

It's a piece of cake to sit on your ass and claim "the kid is done" when you weren't there when the kid was born, when you weren't there while the disease took it's toll.

Perhaps you don't mean to sound callous but using a term like "the kid is done" isn't just callous it's fucking nasty and uncalled for.

This kids parent's are desperate and being led by the nose by the American RW isn't helping them any.

[rfranklin]

Would you feel the same if it was grandma?

Yes, as a parent I understand the impulse to protect the child at all costs but there is a time when it just becomes self-indulgent denial.

[sharp_stick]

16. My critique

wasn't in the gist of the argument is was with the wording. I know the child is never going to recover and I agree with the hospital not wanting to continue care.

Using the term the kid is done just feels so greasy.

[Kurska]

26. Normal human beings call that desire "love"

And I wouldn't call love self indulgent.

[Skittles]

27. you don't think love can become selfish?

WAKE UP

[rfranklin]

13. dupe

[Wickerman]

15. you can read whatever you want into my statement

Forgive the slang, if you would.

Ok, let me say it differently. There is no kid. There is a body mass that is kept functioning by feeding tubes and modern technology but there is no capability of supporting life and because the disease is degenerative whatever once was is NEVER coming back.

I understand the desperation the parents are going thru, or, at least I can empathize. I really believe the kindest thing for them to do would be to shut down the support systems. My "the kid is done comment" probably reflects my horror that they are keeping this child's body going when the child is no longer there.

The Canadian government and the hospital are doing their best to help the parents understand by refusing care.

I am a father of four and am one of those dreaded govt social services workers who is feeding at the public trough. Our clientele consists of traumatic brain injury cases and developmentally delayed clients - not that either of our opinions mean dick in this case.

[sharp_stick]

19. I know the baby is dead for all intents and pur

and I know there is no chance of ever bringing that child back. To somebody that doesn't understand what a persistent vegetative state is though, the child more or less looks to be sleeping. The cheeks are pink, the eyes move. Fuck, just thinking about what they are going through gives me a serious case of the shivers.

No matter how bad it gets those parents need empathy and caring. I don't envy anybody in this situation, the child has to be removed from life support IMO and I'm sure it will be done. It doesn't have to be done today, and it shouldn't be done in the spotlight of the media.

Now that fox noise has their ghoulish fucking fangs into this I don't anticipate anything short of a horrific time for this babies parents and the medical teams involved.

[Dorian Gray]

30. I agree

The poor parents love their child and are hoping for a miracle. It's sad all around. I hope they can find peace. The poor baby has suffered incredibly, as I am sure they have as well.

[Warpy]

3. Losing a child is supposedly the worst pain you can go through

so I can't fault them much for wanting to delay it as long as possible.

However, I do hope for the baby's sake that no hospital will take him. Unfortunately, some Catholic hospital will undoubtedly step up to publicize their consistent pro life status, up to and including keeping corpses technically alive on ventilators (and feeding tubes).

I hope they find the strength to let him go before that happens.

[rocktivity]

5. The fact the the hospital changed its mind speaks for itself

and I'm sure it was done so after they found out exactly how persistently vegetative the child is.

:headbang:
rocktivity

[KamaAina]

18. I was thinking it was done after the bean counters ran the numbers

:eyes:

[damntexdem]

8. And what part of "the U.S. hospital turned it down" is not understood?

Hey, look, private-sector hospitals running death panels! ;-)

[SpankMe]

4. Right wing hypocrisy

From the last paragraphs of the article, quotes from Terri Schiavo's sister:

"Every patient, regardless of age, has a right to proper and dignified health care. It is frightening to once again see government usurp the God-given rights of parents to love and care for their child at home, especially when the child is dying."

Schiavo's sister and parents were exposed to be largely right wing nut-jobs when the Terri Schiavo thing was going down - and yet they seem to be saying now that health care is a right. This "right" can only really be conferred with the assistance of the government owing to the high cost. Schiavo's sister's opinion in this case seems inconsistent with her political leanings.

I do realize my logic is ad hominem since being conservative doesn't mean you are necessarily opposed to government run health care. But, this is an annoying contradiction to me anyway.

[uppityperson]

6. I can understand the anguish this family is going through, also understand the health official point

[RamboLiberal]

7. From OP article

The Maraachlis are seeking a second opinion from what they consider to be an objective source that can review the more than 1,000 pages of Joseph's medical records and provide a better assessment of their son's treatment options.

If he is beyond hope, they want him to be able to receive a tracheotomy, where he can be transferred home and die in the care of family instead of in a hospital.

Experts say even if the family is granted this request, caring for a child in this condition is an arduous task.

Dr. David Casarett, director of research and evaluation at the University of Pennsylvania's Wissahickon Hospice, says patients at home with tracheotomies need monitoring to make sure the airway is clear of secretions, the skin is clean and dry and someone can make sure the incision at the tracheotomy site does not get infected.

IMHO they should get the 2nd opinion & the tracheotomy - then let the child live out whatever life is left with no heroic measures. I hope this doesn't turn in to another Terri Shiavo and damn Faux and any of the other RW blowhard for turning this in to death panels.

Want death panels - look to AZ & other states taken over by Repukes & insurance companies & our whole damn health care system.

At least Canadians can get health care without facing bankruptcy & fights with insureance companies.

[Iliyah]

9. Forget that

if the GOP have their way, I mean look the GOP doesn't want their own people to have health care.

[quakerboy]

28. Hey... Look at the bright side

Maybe at least this one family of Canadians can move down to the US and exercise their right to go bankrupt in search of a miracle.

[Dan]

29. and our system will definitely do everything it can to

bankrupt them...

[WatsonT]

31. Agreed

I'm surprised they haven't already gotten a 2nd opinion.

But if the kid is really terminal (seems likely) he ought to be able to die at home with his parents.

[Hoyt]

10. Sadly, this is one of the situations we have to address to ever have "affordable" Hcare.

Getting rid of profits in health coverage comes first, but health care will never be affordable as long as we spend enormous amounts when the care isn't going to change much. Tough, I know. I'm for Euthanasia too.

[boppers]

11. So sad to see parents talking to children after they're buried.

Its not easy for some people to let go, even after their loved ones are dead. The loss is only compounded by "medicine" that keeps dead people in a state where they're somehow appearing to be alive.

[Rhiannon12866]

12. My heart goes out to these folks. They're motivated by desperation.

Incredibly sad to lose a child. ;(

[sharp_stick]

20. Absolutely

There is no upside for anybody in this situation.

Things like this are of the reasons I could never have cut it as a Pediatrician.

I had a classmate in med school that almost dropped out after our Pediatric rotation started. We all went in thinking it was "snots and shots" and the first thing we were exposed to was kids with no hair being treated for leukemia.

[Rhiannon12866]

21. Wow. And I sure agree.

For that reason, I can't blame these folks. It's impossible to imagine, unless you've been there. :hug:

[JJW]

14. Error on the side of the family wishes

If the hospital hadn't changed their minds, perhaps I would support their denial. There certainly isn't any harm to the child if he is in a vegetative state. But it seems that is also of question.

[Dappleganger]

17. It's hard to let go...

but sometimes love demands the hardest thing to be the best decision.

[crim son]

22. Very sad.

I wonder whether the family intended to pay for the baby's care in the Michigan hospital or whether they were expecting the Canadian government to pay the bill, and I wonder if the answer to this question explains why the request to transfer was denied.

[RamboLiberal]

23. Very good point

[tortoise1956]

24. Has anyone actually read about this case?

The family in question had another child with essentially the same condition, so they know what will happen. All they are asking for is a chance to care for him at home, surrounded by those who love him.

Some points:
1. If he is at home, this should decrease the cost of his care.
2. It was OK for them to do this with the first child, why is this time different?
3. If another hospital volunteered to do the trach needed to keep the tube in, and it won't cost the Canadian health care system anything, what is the rationale for refusing the request?

Frankly, I don't see the downside to letting them have their way. Besides, I always get worried when a government functionary is making life-and-death decisions when they have no stake in the outcome. think of it this way - if it was the U.S. government saying that if you became pregnant, you HAD to have the child, how many of us would be out there ripping a new one? I know I would...

[Kurska]

25. It isn't the state's roll to pull the plug anymore than it is the state's roll to tell them not to.

It is absolute bullshit either way, the most immediate family with power of attorney should be making medical choices of this magnitude. If the parents want to move their child they have every fucking right to.

It
isn't
their
business.

[dropkickpa]

32. Ugh, what a shitty situation!

If Dropkid were in the condition this kid is, I'd opt to donate her organs and tissues. That's the only way I can see any good coming of a situation like this.

What kills me is they already got the second opinion from the hospital in Michigan, they were turned down after a team reviewed the kid's records and found nothing would be any different if the kid were moved there. Now they're just answer-shopping in the hope that it will be a different answer. If the baby didn't have to be on a breathing tube, the objections to taking him home to die wouldn't be there, but the maintenance of a trach is a hell of a lot more than the parents think it is, and the hospital is acting in the kids best interest, protecting him from pain and further sickness.

Sad, sad situation.

[tortoise1956]

33. Once again, read about this case

Their first child had the same condition. In that case, the baby was given a tracheotomy and lived for several more months at home, dying surrounded by family. I would say that they have a damn good idea of what is involved in trach maintenance.

So I repeat - IT SHOULDN'T BE UP TO A BUREAUCRAT TO MAKE THIS DECISION! This is state-sponsored murder. It stopped being euthanasia when the Consent and Capacity board made the decision to remove the breathing tube without doing a tracheotomy. There are no compelling medical reasons to do this, especially with the family history of caring for the first child. What is more heinous is that the Ontario Superior court sided with the hospital.

Don't get me wrong, I am a firm believer in the right to die with dignity. That is one reason why I have made sure that everyone in my family, along with my closest friends, know that I have no desire to be kept on life support if I'm a vegetable. However, this needs to be an informed decision by either the person involved, or somebody who knows their wishes and/or has their best interests at heart. giving the state the power to arbitrarily force this type of decision on others usually doesn't end well. If you don't believe me, look at the history of those societies who have practiced euthanasia.