NRL News

The Story Behind the Story of Baby Joseph

by | Apr 29, 2011

By Dave Andrusko

There is always (to borrow from the legendary Paul Harvey) “the rest of the story,” the information that fleshes out what often are skeletal accounts.

Dr. Bob Wilmott

We’ve written a number of stories about “Baby Joseph” Maraachli, the gravely ill 15-month old baby whose parents fought an ultimately successful battle to have a tracheotomy for Joseph so that he could go home and spend whatever time he has left with his parents and brother, Ali.

By now most of our readers know the background: that the Canadian medical facility where Joseph resided adamantly refused to perform the procedure–arguing that the surgery was futile and invasive–and won court permission to remove Joseph from life support; that they diagnosed Joseph to be in “persistent vegetative state (PVS).”; and that Cardinal Glennon Children’s Medical Center agreed to accept Joseph, who was flown to the hospital in St. Louis, Missouri on March 13, after other American hospitals refused.

But a story in today’s St. Louis Post Dispatch—an interview with Dr. Bob Wilmott— fills in a lot of details that weren’t well known, if at all.

We learn from Blythe Bernhard’s account that a prominent physician had been contacted by Baby Joseph’s advocates who in turn contacted Wilmott and “presented the case to Wilmott from a medical perspective.”  Wilmott had personal experience (his adult daughter had needed a tracheotomy as a child).

“I’m sure it’s affected me some,” Wilmott told Bernhard. “You have to assume parents know best … and support them in decisions they make.”

Wilmott, chief of pediatrics at Cardinal Glennon Children’s Medical Center, was too kind to publicly second-guess the diagnosis of London Health Sciences Centre in Ontario, Canada. Wilmott agreed the baby’s condition is fatal and progressive but said Joseph has a “disorder of consciousness.”

This is not nit-picking. A PVS diagnosis is routinely taken as providing carte blanche to do nothing, including removing life support and ending feeding the patient.

“We’ve seen some responses I think other doctors didn’t witness,” Wilmott  told Bernhard. Bernard adds, “Joseph would sometimes open his eyes and demonstrated other spontaneous movements while at Cardinal Glennon, the doctor said. The child seemed to respond to touch and liked having his arm stroked.”

What else? Big and little things. Little things like Baby Joseph looking bloated in pictures. That’s because the baby’s caloric needs are much lower—and he’d been given too much formula through a feeding tube. “On a limited diet, the child should now drop to a more normal weight,” Wilmott said.

Big things like the fact that the original idea was to connect Joseph to a portable ventilator so he could leave the hospital—but that within three weeks of having the surgery to open his airway, Joseph was weaned from a ventilator and went home to Windsor, Ontario!

As a result of having a breathing tube inserted in the throat instead of through the nose, it not only allowed for more stability, “It also allowed the Maraachli family to hug Joseph more easily, and see his face without any tubes or tape,” Bernard wrote. “’He started to look much more like a baby again,’ Wilmott said.”

There’s lots more, such as the cheap shot taken at Cardinal Glennon by the Canadian hospital. It was fine that it strongly objected to the transfer, but it also “referred to Cardinal Glennon’s Catholic affiliation.”

Wilmot responded, “Our decision would have been the same if we had a Catholic affiliation or not.”

Perhaps the most encouraging news for Joseph and his family came from a story that appeared in a Windsor, Ontario newspaper, in which the family celebrated Joseph being home for Easter. We ended our last story about Joseph with a long quote from it.

“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.”

You can read the story in its entirety here.  

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Categories: Baby Joseph