'I feel victorious,' says Baby Joseph's father

Vancouver Sun ^ | APRIL 25, 2011 5:52 AM | Jeff Bolichowski

[BykrBayb]

WINDSOR, Ont. — Baby Joseph napping at home in his crib on Easter Sunday is all the proof his father needs that his Ontario doctors were wrong.

Only months ago, the fate of 15-month-old Joseph Maraachli was a question mark. Doctors at London Health Sciences Centre in London, Ont., sought to take the infant off life support as he battled a progressive neurological disease.

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.

He isn't sure how long Joseph will live. And he declined to to guess how much time he and his son have left.

"That's by God and by him," Maraachli said, his tone calm and positive. "I never think about that and I don't think about this day."

Joseph's progressive neurological disease was identified in the U.S. as Leigh syndrome. He was originally rushed to the hospital in October while the family was on the way back from Toronto.

When doctors at London Health Sciences Centre sought to take him off life support, his parents refused to give their consent. They wanted him to die peacefully at home. But the hospital refused to give Joseph a tracheotomy, calling the procedure futile and invasive.

Flocks of supporters, many of them high-profile pro-life groups from the U.S., came to the family's aid, and Joseph was ultimately moved to Cardinal Glennon Children's Hospital in St. Louis. There, he underwent the tracheotomy his parents sought.

The operation will allow Joseph to spend his last days at home, without the need for a mechanical ventilator. And indeed, said Maraachli, Joseph is breathing without one.

Battling the system, he said, was the most emotionally painful part of the journey.

The Consent and Capacity Board of Ontario, an independent body created to handle issues under legislation including the Health Care Consent Act, sided with the London hospital. A court appeal by the family failed.

For Maraachli, it seemed like no one was listening to him.

"All these people fighting me. I feel like I'm fighting justice. I'm fighting doctors, I'm fighting the hospital, I'm fighting the medical system. I'm alone."

As the growing controversy around Joseph saw the family divided by travel, Maraachli said it hurt all the more. He said it was hard on Joseph's brother, six-year-old Ali.

"I fight too much because I feel like I'm losing my family," the father said. "I feel like my family's upside down. I feel like (I'm) not (a) good father."

Faith, he said, kept him going.

"I have good faith in my heart and my wife is the same like me, so our faith made us very strong," he said.

Buoying him all the more was the outpouring of support from people across Canada and the U.S. A Facebook group entitled "Save Baby Joseph" had about 15,300 people Sunday. Various pro-life groups in both countries got involved, including U.S.-based Priests for Life, which provided a private flight to St. Louis for Joseph and paid for all his medical care.

Maraachli said if he named all the people he wanted to thank, he'd be talking for hours. The support, he said, gave him a huge boost as he fought to let his son die at home.

"I feel like I'm the hero," he said to describe how the support helped him. "I feel like I'm Superman."

Asked if he ever feared not finding a hospital that would take Joseph, Maraachli didn't want to talk about it. "I wasn't afraid," he said. "I always have a plan B."

As Joseph roused from his rest Sunday, his older brother Ali was quick to act. The beaming six-year-old clambered up into his younger brother's crib, a storybook in hand, ready to read to him — and to give him a little kiss.

Ali has become a part of Joseph's care, too. Maraachli said he's taught him to be something of a nurse. An actual nurse does watch Joseph at night.

He's responsive to his family, Maraachli said. He said Joseph knows when he's being held by his father.

Now, he said, things are returning to normal for the Maraachli family. He said even after the tracheotomy, Joseph's daily routine isn't that different from a normal baby's.

"My life is normal," the father said. "It's back, not upside down, but I still need the answer why."

© Copyright (c) The Windsor Star

[BykrBayb]

Baby Joseph Maraachli sleeps in his room at home on April 24, 2011. Joseph suffers from a terminal neurological disorder which has affected his motor skills and the ability to breathe normally. The baby attracted international attention after doctors at the London Health Sciences Centre, where he stayed for months, recommended he be taken off life support and refused his parents' requests for a tracheotomy, saying it would be futile and invasive. Joseph recently was flown by air ambulance from St. Louis to Windsor.

Photograph by: JASON KRYK, The Windsor Star

Baby Joseph Maraachli holds a finger of his father Moe Maraachli at their Windsor residence on April 24, 2011.

Photograph by: JASON KRYK, The Windsor Star

[max americana]

>”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.” <

Typical kanadian idiot, still hasn’t learned the lesson. If it weren’t for the Americans, your child would be dead.

[madison10]

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

Huh? This father was let down big time and he was still spouting the propaganda?

Blessings on this family and the priests that helped the baby.

[wagglebee]

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[piytar]

Proud of him for fighting, but wow the leftist delusion is strong with this one:

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

Well, thanks to obamacare - if it isn't gutted - the US will soon have just as "perfect" a system. Then babies like his will simply be denied care and die horribly.

Really is stunning how effective marxist propaganda has become in the West...

[Pollster1]

Liberals make fun of Sarah Palin for everything, including her decision not to kill Trig, and her claim that ObamaCare would include Death Panels. They say there were no death panels in the bill and besides that they removed that provision once she complained, but it looks to me like death panels are a natural result of socialized medicine. You don't have enough money for everyone, so you have to kill off the expensive cases, Granny and sick babies, so you can afford to treat protected groups such as homosexuals with AIDS.

[rhoda_penmark]

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

A perfect example of cognitive dissonance.

[kalee]

Why is the mother so seldom mentioned in the articles about this baby? Has she ever spoken? It seems like it is always the father who is pictured and quoted.

Not to rain on the father’s parade, but Priests for Life and the St Louis hospital are the “supermen” in this story. I am grateful that they were able to get this baby proper care and baptize him.

BTW, I agree with you on the Canadian health system quotes.

[FroggyTheGremlim]

My wife and I pray a rosary every day. We ask as special intention, Archangel Raphael (patron of healing), to ask God to intercede for Baby Joseph. We pray that he will be healed from this affliction, and grow up to lead a productive, normal life, perhaps to find an eventual cure for Leigh Syndrome and other neurological disorders.

Archangel Raphael

[neodad]

And what will the rest of the world do when there’s no “medical care of last resort” available in the U.S.?

[TheOldLady]

English does not seem to be Maraachli’s strong suit. Maybe he said “imperfect” and not “a perfect?”

Benefit of the doubt here.

God bless Baby Joseph.

[TexasRepublic]

“And what will the rest of the world do when there’s no “medical care of last resort” available in the U.S.?”

More important, what will WE do? Where will WE go?

[Snowyman]

Why is the mother so seldom mentioned in the articles about this baby?

Moe Maraachli's first name is Mohamed and has announced he will write a book or screen play about his efforts . His wife is Christian, not Muslim like Moe, but is his first cousin . They live in subsidized housing and collect welfare . Maraachli's daughter , Zina , died in hospital of pneumonia , full of infection from her tracheotomy , not at home as Moe likes to pretend.

As for your opinion of Ontario Health you're entitled but you don't know all the facts . London HSC kept this child in intensive care for 5 months even after it was determined that Joseph was brain dead and in a vegetative state . Now , beginning last week , Windsor Hospital will provide 24 hour care at his home .

Is American health insurance as generous as OHIP ? I doubt it. To find the answer , one only need to learn about Sun Hudson and the Texas Advance Directives Act.

[max americana]

>BTW, I agree with you on the Canadian health system quotes.

I know I;m correct...I’m ex-canook myself by way of Sask. Ever since high school in canada, we were already brainwashed to hate Americans and be “more superior’ than them. That’s why he will never admit that pro-life Americans were the ones who had more concern for the child than he did.

[BykrBayb]

...it was determined that Joseph was brain dead and in a vegetative state...

Who determined that he was both dead and alive at the same time? How is that possible? Brain death is the complete absence of brain function. Vegetative state involves some brain function. So how is it possible to have some brain function and no brain function at the same time?

If you have to make up lies to support your position that people should be killed, then maybe they really shouldn't be killed after all.

[wagglebee]

London HSC kept this child in intensive care for 5 months even after it was determined that Joseph was brain dead and in a vegetative state.

Which is it?

Is Baby Joseph "brain dead" or is he in a "vegetative state"? They DO NOT mean the same thing.

What definition of "brain death" exists where a person can breathe on their own for several weeks?

Do you believe that a person who actually is in a "vegetative state" should be allowed to live?

[RnMomof7]

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

That is so sad.. that "perfect" system wanted to murder his baby.. just too much of a drain of the taxpayers.. If Obama care were in full force now, his baby would be dead.. we are Canada's safety valve .They come here to get CATT scans and MRIs and have procedures or surgeries that might take a year or more on the canadian waiting list..

Like most liberal fools they like it because it is "free" ...they have forgotten you get what you pay for ...and in Canada that is lousy health care

[Snowyman]

Is Baby Joseph "brain dead" or is he in a "vegetative state"? They DO NOT mean the same thing.

Where did I say they meant the same thing?

If you bone heads can read , read the actual report , entered before the Consent and Capacity Board , January 24, 2011

“JM's neurological abnormalities became apparent on May 31, 2010.” He was taken to an emergency room in Windsor where they found seizure activity and then was transferred to Michigan Children's Hospital where an MRI “showed a reduction in brain size associated with cells dying from metabolic stress.” He said that a further note from Michigan dated June 15, 2010, “noted severe swallowing difficulties resulting in a gastrostomy tube placement through the abdominal wall into the stomach.”

Dr. F said that this latter problem suggested an inability of the brain to control the muscles required for coordinated swallowing. In his oral testimony, Dr. F reiterated what he said in his two clinical summaries. He explained the medical evidence in easy to understand terms. He indicated that the MRIs and EEGs confirmed that there was a significant loss of neuronal content in JM's brain. He said that neurons do not repopulate. He referred to Exhibit 6 which contained various clinical notes from the attending physicians on the treatment team. At page 1 of that exhibit, he pointed out that it was a note from Dr. L who he said was an expert in brain development and seizure activity. Dr. L concluded his report by saying that there was “severe diffuse neurological damage.” On page 2 of that exhibit, Dr. F pointed out that a neurological assessment of JM was completed by Dr. P on December 20, 2010. He said that Dr. P was an expert in brain growth, seizure and metabolic diseases of the brain. In that report, Dr. P said that JM “remains severely impaired-as in a vegetative state.”

Dr. F referred to page 3 of that exhibit and a report from Dr. L on December 27, 2010. Dr. L said: “the examination is unchanged except I am unable to elicit corneal reflexes bilaterally.” Dr. F said that JM was missing all five of the brainstem reflexes critical for life which he said were gag, cough, eye movement, pupil and cornea responses.

Dr. F said that JM was at the time of the hearing in a persistent vegetative state. He said that he showed ongoing severe, progressive neurological deterioration. He said that JM was blind and deaf. He said that JM had no proper reaction to pain except an automatic reflex. He said that JM's father wanted everything done for JM. He said that MM agreed to have a second opinion. Dr. B of Toronto’s Hospital for Sick Children provided that opinion. Dr. F said that Dr. B was a world renowned pediatric critical care specialist. Dr. B spoke to Dr. S on November 29, 2010, referenced by a note at page 7 of Exhibit 6 and Dr. B, having examined all of the documents forwarded to him, agreed with the position taken by Dr. F's treatment team at LHSC.

yeah ,I know . They're all liars too.

http://www.canlii.org/en/on/onccb/doc/2011/2011canlii7955/2011canlii7955.html

[wagglebee]

Where did I say they meant the same thing?

I never said that you did, I asked WHICH was it.

If you bone heads can read , read the actual report , entered before the Consent and Capacity Board , January 24, 2011

You mean the one written by the Canadian doctors who wanted to leave him for dead.

Let's be very clear, this report was written several weeks BEFORE Baby Joseph was brought to America. It was written BEFORE he was given a tracheotomy and it was written BEFORE he was breathing on his own.

yeah ,I know . They're all liars too.

You can call them liars or whatever the hell else you want to call them, the FACT is that they said Baby Joseph couldn't breathe on his own. Baby Joseph is now BREATHING ON HIS OWN, these doctors were WRONG.

You never did answer my other questions:

Is there a definition of "brain death" that includes the ability to breathe without a ventilator?

Do you believe those in "vegetative states" should be allowed to live.

[surroundedbyblue]

“Dr. F referred to page 3 of that exhibit and a report from Dr. L on December 27, 2010. Dr. L said: “the examination is unchanged except I am unable to elicit corneal reflexes bilaterally.” Dr. F said that JM was missing all five of the brainstem reflexes critical for life which he said were gag, cough, eye movement, pupil and cornea responses.”

I suggest Dr. F go back for some basic medical training. One cannot lack these reflexes yet still be breathing. This child is not on a ventilator. So yes, they are liars.