13 mo. old-Life Support

[sadie1263]

Giving Little Joseph Maraachli a Fighting Chance
By Dr. Manny Alvarez



The family of a 13-month-old Canadian boy on life support has defied a court order to remove the boy’s breathing tube and now is looking to an American hospital for help.
Joseph Maraachli has been in a vegetative state at a hospital in London, Ontario, since last fall suffering from a neurodegenerative disease that his doctors believe is hopeless. But when a Superior Court judge ordered the removal of the boy’s breathing tube on Monday, his parents refused, insisting he be released to his family’s care to die peacefully at home.
And you know what? I would have done the same thing.
Right now, little Joseph Maraachli’s breathing tube is helping to keep his airway open and clear of secretions caused by his neurological and respiratory problems. It is literally breathing life into him each day.
The Maraachlis asked doctors at the hospital to perform a tracheotomy that would open up a direct airway in the trachea and allow them to bring their baby home to spend his final days with his family – but the hospital refused, and now they are hoping to keep the breathing tube in place until Joseph can be transferred to the Children’s Hospital of Michigan, as they have agreed to review his case.

Reminiscent of the Terri Schiavo case, this story has stirred up a controversial debate as many people theorize what would they do if they were in this poor family’s shoes.
As a medical professional, I understand that an assessment of his illness shows no known cure. But as a father — and a human being — I would fight until my last breath to give my son a fighting chance. Hell, I would give my son my last breath if it meant he could breath one more moment of life.
There’s no evidence to support the notion that miracles don’t happen. In fact, it’s quite the contrary, with extraordinary medical feats happening all the time. There have been many instances in modern medicine where cures come at the last second, just when we think we have exhausted all of our resources. And there’s nothing wrong with getting a second, third, fourth or fifth opinion when it comes to the life of a loved one – especially a child.
I remember when I was a single doctor without children and a family. As an OB/GYN, dealing with life and death matters every day, I would always focus on the facts.
I was often devoid of emotion, but that’s not the reality of life, and as much as doctors have to try and develop a thick skin for our own self-preservation, shutting off your emotions when it comes to your patients, is not a reality of medicine either.
When I became a father, I began to see life with more purpose. I began to see how that love that I have for them is such that I would do anything to keep them safe.
I understand there are medical conditions that have no cure, but let’s not lose sight of the fact that patients may not understand that or may not accept that as the final word. It’s always right to tell parents that they should seek a second, third and fourth opinion before you give up all hope and advise they pull the plug.
I’m not trying to say that these doctors in Canada are wrong for coming to the conclusion that they could not cure little Joseph. But I hope that they’ll remember, when it comes to the life of a child, parents know no limits, and we must offer options for closure and comfort, and perhaps maybe even a miracle.
So I will join the prayers to save baby Joseph and if the end does come, at least we know he had a fighting chance.


www.foxnews.com/health/2011/02/23/giving-little-joseph-maraachli-fighting-chance/#ixzz1EpkI3vwM

[sadie1263]

The parents of a Canadian boy ordered off life support by government health officials have been denied a request to transfer the 13-month-old to the Children’s Hospital of Michigan.
London Health Sciences Centre in Ontario, Canada, was advised Thursday by the Michigan hospital that the boy would not be transferred.
Moe Maraachli and his wife, Sana Nader, of Windsor, Ontario, wanted the Michigan hospital to perform a tracheotomy on their son Joseph, who is currently kept alive by a respirator. The boy suffers from a rare, progressive neurological disease which, Canadian doctors say, has left him in a vegetative state beyond recovery.
A spokesman for Maraachli told FoxNews.com the family is "working on an appeal" to the Michigan hospital's decision. The hospital declined to comment on "any matters surrounding the case."
Joseph’s parents believed that if the Detroit hospital had accepted the child and conducted the operation, in which doctors would place a breathing tube in his windpipe, he could be cared for at home.

Canadian health care allocation officials already ruled that Joseph had to be taken off life support and allowed to die in the hospital. A Canadian judge then ruled that Maraachli had to give his consent to having the breathing tube removed by Monday. He refused.
Health care economist Dr. Devon Herrick, a senior fellow at the National Center for Policy Analysis, said the structure of the Canadian health care system allows public officials to make patient care decisions.
“Hospitals have global budgets as opposed to charging patients or their insurance companies, so the officials would have far more power over what their individual hospitals do,” Herrick said. "If it were in the U.S., you wouldn’t have public officials who would have the power to tell a hospital to do this or do that."
Maraachli says turning off life support could cause his son to choke and suffocate. He told Fox News on Wednesday that the doctors at London Health Sciences Centre have said the “best treatment” is to “let him die… I don’t know what kind of treatment that [is].”


Read more: www.foxnews.com/world/2011/02/24/canadian-family-life-support-battle-denied-request-hospital-transfer/#ixzz1EvVunxyE

[Deleted]

I won't even try to understand the medical reasoning behind all this, but one thing stood out:

A Canadian judge then ruled that Maraachli had to give his consent to having the breathing tube removed by Monday. He refused.


Read more: biglinmarshall.proboards.com/index.cgi?board=philosophy&action=display&thread=2251&page=1#ixzz1ExrGWJCH

Taking the decision out of the hands of the parents is one thing, but actually requiring them to agree to something they oppose sounds very heartless.

[sadie1263]

Really tough story......

I can see that the parents would rather have him at home. I think the hospital should have respected their wishes for that.

I am a big believer in death with dignity and being hooked up to a ton of machines in the hospital versus at home surrounded by family.........well......that should be a choice you should be able to make.

[Deleted]

Feb 25, 2011 16:04:16 GMT sadie1263 said:

Really tough story......

I can see that the parents would rather have him at home. I think the hospital should have respected their wishes for that.

I am a big believer in death with dignity and being hooked up to a ton of machines in the hospital versus at home surrounded by family.........well......that should be a choice you should be able to make.

But Sadie, this was a child; morover a child unable to speak for himself; how could he make that choice?

If overwhemming medical opinion is that a child would suffer through a procedure which would enable him to come home, then those views, not those of his parents , should prevail.

If he is totally unable to feel anything - well, why not give the partents the comfort they crave? It will matter not a jot to him, only to the public purse...

....and here I am less certain about the rights and wrongs. Is it okay when funds are limited to patronise parents who have unrealistic expectations?

[sadie1263]

I thought the family was just asking to have a trachea performed so they could bring the baby home and let him pass away there and not in the hospital. The hospital wants to stop the breathing tube....but I guess just keep him in the hospital.....not really sure.

Since the baby can't make this choice.....I think the parents should be the ones to make that choice. If the transfer is about trying other options that they think will keep him alive.....I do have mixed feelings on that......as a parent I would be looking and hoping for a miracle also......but then I just don't know how long I could put my baby thru all that.....

Truly a tragic case.

[Big Lin]

Stories like this are just heartbreaking.

I don't know what to say to be honest - I can see both sides on this one.

[sadie1263]

The Canadian hospital under fire for ordering parents to remove their young son from life support because he is a vegetative state has backed down and agreed to one of the family's requests: to let the boy die at home.
London Health Sciences Centre in London, Ontario, issued a statement Monday afternoon saying that it will bring 13-month-old Joseph Maraachli to his family's home, but it then insists that staff members remove the boy from a respirator, possibly giving him only minutes more to live, the London Free Press reported.
“London Health Sciences Centre is and always has been willing to organize and pay for a medical transfer home to Windsor (where the family lives) for Baby Joseph, accompanied by LHSC physicians and staff,” the hospital said.
But the hospital still will not agree to the parents' request to perform a tracheotomy on Joseph, a measure the hospital calls needlessly invasive but the family has said helped their older child who suffered a similar condition live another six months.
The announcement comes as the hospital finds itself on the receiving end of threats sent by e-mail and phone calls, many of them said to come from the U.S. The hospital has since beefed up its security.



Read more: www.foxnews.com/world/2011/02/28/canadian-hospital-agrees-let-boy-vegetative-state-die-home/#ixzz1FMVKnnpz

[♫anna♫]

www.cbc.ca/news/canada/windsor/story/2011/02/28/wdr-maraachli-release.html
Little Joseph looks very much alive and alert! It seems like the people with power are determined to let him die.

[sadie1263]

The story went on to say that the family had another child that passed away from this same disease. Wouldn't that make it some type of genetic thing?

Wow.....I just don't know that I could keep having children with even the idea that it might happen again.....and keep putting myself and them thru that.........

[sadie1263]

Written by Anne Jarvis

Some people suffer more than their fair share of sorrow.

I can't comprehend the anguish of the parents of baby Joseph Maraachli as they watched first their daughter and then their son decline from a severe and progressive neurodegenerative disease.

And now, in the midst of their grief, they're being ordered by a government tribunal to allow doctors at a London hospital to remove Joseph's breathing tube and let him die.

When is a life worth living? When is it time to let it go? Who decides?

Joseph's mother wants the hospital to perform a tracheotomy "so I can have more time before he dies," she told Ontario's Consent and Capacity Board. If they have more time, she said, they can hope for a miracle.

What parent wouldn't? No parent is ever ready to say goodbye.

Doctors say he won't recover, she said, but Joseph "is not their son." No, he isn't. No one will feel his loss as profoundly as his family, and no one will carry that loss for the rest of their lives, like his family will.

Joseph's father told the board that he would feel "guilty" if he agreed to let his son die. It's a terrible, almost unfathomable decision for a parent to have to make.

At the same time, eight doctors, specialists in neurology and pediatric critical care, one world renowned, examined Joseph and all came to the same conclusion.

Doctors are trained to cure illness, heal injury, save lives and above all, care for their patients. Sometimes, in trying to do everything they can, they push the limits of medicine. They're human, too. I once saw a doctor cry as he talked about a dying patient. They're not "baby killers."

They're being accused of "playing God," but doctors and even patients and their families play God every time they agree to intervene to create life or to save or prolong life. As medicine advances, and we can do more, sometimes the question becomes: Should we?

As agonizing as it is to hear, these are the facts of baby Joseph's condition. He has severe, widespread and progressive brain damage, and there is no treatment and no hope of recovery, his lead physician, Dr. Douglas Fraser, told the board.

The infant lacks all five of the brain stem reflexes critical for life. All cranial nerve functions are absent. His brain does not react to external stimulation. He is in a persistent vegetative state. He will not interact meaningfully with his environment.

He needs a ventilator to breathe, a feeding tube to eat, help clearing secretions and will always be confined to a bed. He is at risk of aspiration, pneumonia and other infections and bedsores.

Joseph's parents say he should die when God decides. But it seems like God has already spoken.

Performing a tracheotomy -cutting a hole in Joseph's throat to open an airway -would probably prolong his life, Dr. Fraser said, but it wouldn't improve the quality of his life or provide a chance for recovery. And the invasive procedure would inflict further trauma and increase the risk of infection and other complications.

Respect for human life, the board states in a compelling argument, isn't only about prolonging it. It's also about meaning and dignity. Life should not be prolonged "at any cost," it states, citing a decision in a similar case in England. A patient like Joseph "remains a person," and "there must be something more for the humanity of the person." The patient, no matter the condition, "has the right to be respected."

Even after the tracheotomy, caring for a patient like Joseph requires constant and extensive handling and manipulation of the body, the board said, citing another case in the U.S. "When cherished values of human dignity and personal privacy, which belong to every person living or dying, are sufficiently transgressed by what is being done to the individual, we should be ready to say: enough."

Their hope for their son and their desire to bring him home have prevented Joseph's parents from seeing this, the board states.

"(They) were blinded by their obvious love for (him)."

Prolonging Joseph's life might help his parents come to terms with his death, but it won't allow Joseph the dignity he deserves, the board concluded.

"After three months in hospital hooked up to tubes and machines, after suffering from the invasion of personal privacy, after suffering human indignities, and with the exacerbated difficulties that would arise because of the tracheotomy, it was time for the parents to say 'enough.'"

Regardless of how death comes, time is running out for Joseph. And as more pro-life and anti-euthanasia groups join the debate, the family is losing precious private moments together.

[e-mail]

© Copyright (c) The Windsor Star


Read more: www.windsorstar.com/health/Anne+Jarvis+Baby+Joseph+deserves+dignity/4369828/story.html#ixzz1FYKFV9y9

[sadie1263]

The baby who was hours from being pulled off life support at his Canadian hospital has been rescued by the national director of Priests for Life and taken to the U.S. for treatment.
Thirteen-month-old Joseph Maraachli, who is currently kept alive by a respirator and was recently denied a transfer to a Michigan hospital to undergo a tracheotomy, arrived in the U.S. early Monday morning with Fr. Frank Pavone and other Priests for Life staff.
"Priests for Life staff toiled through the night for many nights, working in concert with dozens of people to make this possible," Father Pavone said in a statement. "Now that we have won the battle against the medical bureaucracy in Canada, the real work of saving Baby Joseph can begin."
Maraachli was on his way to SSM Cardinal Glennon Children's Medical Center in St. Louis, Mo., a non-profit health-care facility open to all children in need of medical care.
The boy suffers from a rare, progressive neurological disease which, Canadian doctors say, has left him in a vegetative state beyond recovery. He has been at the Children’s Hospital in London, Ontario, since the fall.
Priests for Life says it represents a family of ministries that "reach and enrich every aspect of the pro-life movement," according to its website. The group has been strong advocates for the boy's release and critical of his treatment in Canada.
"The medical board overseeing his case is apparently convinced that giving proper care to 'Baby Joseph' is futile," the website reads. "They don’t mean that the medical care won’t help him. They mean his life in its current condition isn’t worth the trouble."


Read more: www.foxnews.com/us/2011/03/13/baby-joseph-gets-second-chance-life/#ixzz1Gaq42i6o

[Deleted]

So Father Pavone thinks that baby Joseph can be saved.

A case of "watch this space", then?

[sadie1263]

Doctors at SSM Cardinal Glennon Children’s Medical Center in St. Louis, Missouri, will perform a tracheotomy today or tomorrow on the gravely ill thirteen-month-old Canadian baby, Joseph Maraachli, “to facilitate his transition to a skilled nursing facility,” according to Dr. Robert Wilmott, chief of pediatrics. “Baby Joseph” has been the focal point of an international debate over treatment, with the parents asking for a tracheotomy for their son and London Health Sciences Centre, in Ontario, Canada refusing.

A tracheotomy creates an opening into the airway through an incision in the neck. “The trache tube then help draw fluid out of the lungs, creates a safe and stable way to use a mechanical ventilator, and is more comfortable for the child,” according to CBC News in Canada. The hospital said this would be invasive treatment, risked infection, and was futile.

The baby’s exact condition is defined in various ways, but the common denominator description is that he suffers from a progressive neurodegenerative disease. He has been on a ventilator since he arrived at the London Health Sciences Centre last October.

Dr. Wilmott said in a statement Monday that Cardinal Glennon hospital is “pleased to be able to assist the family in this very challenging time.” Added Bob Davidson, a hospital spokesman, Cardinal Glennon staff thought “we could at least provide this family with a second opinion, so that’s what we agreed to do.”

The baby’s parents, Moe Maraachl and Sana Nader, had been in an drawn out battle with London Health Sciences Centre before Baby Joseph was airlifted late Sunday night to Cardinal Glennon hospital, a move made “despite the strongest possible medical advice to the contrary,” according to the Centre.

The parents say they want the tracheotomy done so Baby Joseph can die at home with his family. Their baby daughter, Zina, had a similar condition eight years ago. In that instance doctors did perform a tracheotomy. Zina lived for six months after the family took her home, according to the child’s aunt."

www.nationalrighttolifenews.org/news/2011/03/an-update-on-“baby-joseph”/

[sadie1263]

Mar 28th, 2011

Joseph Maraachli, dubbed “Baby Joseph” by the media, is making a good recovery after receiving a tracheotomy at SSM Cardinal Glennon Children’s Hospital in St. Louis, Missouri.
The procedure was performed as an important first step in transitioning the 1-year-old to a nursing facility, before allowing him to return home to Windsor, Ontario with his parents, Moe and Sana Maraachli, for his final days. He is scheduled to have the tube changed in the coming week.

[sadie1263]

Baby Joseph is still in the St. Louis hospital where he received a tracheotomy that London doctors had refused to perform.

Doctors at SSM Cardinal Glennon had hoped that 14-month-old Joseph Maraachli would be able to be transferred by the end of March to a pediatric facility, an intermediary step before the infant’s family may be allowed to take him to their Windsor home for his final months — Joseph has a progressive neurologic disease from which London doctors don’t think he can recover.

But while that transfer still hasn’t occurred three weeks after the March 21 tracheotomy, hospital officials said Monday he was in good condition.

The tracheotomy had been a point of dispute between Joseph’s parents and doctors in London, who’d kept Joseph alive beginning in October with a feeding tube and a ventilator.

****************

There is a sweet pic of the baby at this link.

www.lfpress.com/news/london/2011/04/11/17954051.html

[Deleted]

Thank you for the update. I hope the little chap is not suffering; I suppose no-one really knows.

[sadie1263]

The terminally-ill Canadian baby at the center of a right-to-life dispute was en route to his home in Ontario Thursday morning after spending months receiving treatment from U.S. and London hospitals, Fox News has learned.
Fifteen-month-old Joseph Maraachli, known to the world as “Baby Joseph,” is being transported from SSM Cardinal Glennon Children’s Medical Center in St. Louis, where he received a tracheotomy last month, the Windsor Star reports. He will arrive in Windsor, Ontario, on Thursday.
The boy suffers from a rare, progressive neurological disease, which, Canadian doctors say, has left him in a vegetative state beyond recovery.


Read more: www.foxnews.com/us/2011/04/20/baby-joseph-return-home-canada/#ixzz1K9gS5Ws0

[Deleted]

Here is yet another updale:



But on Sunday, the round-cheeked baby was home in Windsor, resting in a cradle packed with plush toys. Now and then he opened his eyes or wriggled a little, or moved his arms beneath father Moe Maraachli's occasional touches and kisses.


When Maraachli held out a finger at one point, Joseph's own stubby fingers curled around it.


He's breathing without a ventilator, Maraachli said, after surgery in St. Louis — the airway-opening tracheotomy his family sought but couldn't get in Canada as they battled to bring Joseph home to die.


"I feel victorious," Maraachli said, smiling broadly as he stood by Joseph's crib. "I feel I won and my baby's alive."


But he's also been left with questions about why he and wife Sana Nader had to go to the U.S. for help.


"That's what makes me mad," he said. "Why I have to travel to St. Louis?


"I trust my medical system. We have a perfect medical system in Ontario."


But the doctors in London, he said, let him down.


He's not angry at the hospital itself, Maraachli said. But he said he feels he's owed an explanation for the decision to refuse Joseph the tracheotomy.



Read more: www.windsorstar.com/health/feel+victorious+says+Baby+Joseph+father/4669344/story.html#ixzz1KoNiPMh5



I'm afraid that I initially though the parents were being selfish, and I still believe that Joseph almost certainly is no better off at home than in hospital. But if he is breathing easily now, and not suffering (not sure about the latter), it does raise a lot of questions about the doctors' initial decision.

[Deleted]

Sadly, but inevitably, the little boy has died.



www.dailymail.co.uk/news/article-2042894/Terminally-ill-baby-Joseph-Maraachli-dies-home-aged-20-months.html