Calgary’s ‘boy in bubble’ awaiting surgery

Calgary’s ‘boy in bubble’ awaiting surgery
Baby Evan needs a bone marrow transplant done only in Toronto

Melanie Pogubila must don sterile clothing before holding her eight-month-old twin son, Evan, who lives in a special germ-free room at the Alberta Children’s Hospital. Evan is the only child in Western Canada with a rare immune system disease.

Melanie Pogubila must don sterile clothing before holding her eight-month-old twin son, Evan, who lives in a special germ-free room at the Alberta Children’s Hospital. Evan is the only child in Western Canada with a rare immune system disease.
Photograph by : Leah Hennel, Calgary Herald


Emma Poole, Calgary Herald
Published: Monday, February 05, 2007

From a second-floor isolation room at the Alberta Children’s Hospital, little Evan Pogubila puts his hand to the glass.

Inside the room, Evan’s mom holds the eight-month-old baby on her hip, bouncing him up and down while blowing against his chubby cheeks through her protective face mask.

For nearly half his brief life, Evan’s mom hasn’t been able to touch her lips directly to his silky smooth face.

She’s not been able to touch him with her bare hands, or let the boy grab her hair. Evan’s twin sister Jordan is the lucky one — mom Melanie kisses her every day.

But Jordan has an immune system to protect her. Evan doesn’t. His best chance for a normal life is a rare bone marrow transplant — a procedure not available in Calgary.

The only portion of his mom’s body that Evan has been able to see is her eyes.

The rest is a head-to-toe tarp, covered with sterile clothing, including a gown, cap, booties, and latex gloves.

“He is the boy in the bubble,” explains Melanie. “I’m just raising my child in the hospital.”

As the only child in Western Canada to suffer from severe combined immunodeficiency disease — a condition brought to the public eye by a 1976 John Travolta movie, The Boy in the Plastic Bubble — Evan has been living in solitude from the outside world for more than three months.

Any contact with the public — from his twin sister to his cousins — could compromise what little he has left of his immune system.

The closest Evan can get to playing with his twin is to grasp at her picture taped to the crib inside his hospital room.

“Kids are incubators and we can’t risk letting her in there,” Melanie said.

It was early November when Melanie noticed Evan’s appetite begin to wane. He was breathing rapidly and “just wasn’t interested in eating,” she said.

It took 10 days for the doctors at the hospital to diagnose his condition as SCIDs. He hasn’t left the hospital since.

“He loves to see people at the window. He loves to stare outside,” Melanie says, adding Evan’s care at the hospital has been first rate.

Caused by a genetic defect, SCIDs is the most rare — and deadly — of the primary immunodeficiencies.

Children with the disease lack lymphocytes, the white blood cells that the body uses to fight infection.

They suffer from an abnormal number of infections, including pneumonia and meningitis.

The world first learned of the disease more than 30 years ago after the diagnosis of American David Vetter, who lived for 12 years in a hermetically sealed plastic bubble.

Technological advances have prevented Evan from having to live in the same enclosure.

Instead, Evan will remain in the special hospital room waiting for a call from Toronto’s Hospital for Sick Children to say a bone marrow donor has finally been found.

Transplantation is the only chance Evan has of beating the disease and leaving the hospital.

The problem, however, is that the family will have to move to Toronto for up to a year as the youngster undergoes treatment.

“I’m not a patient person, so this is killing me,” Melanie says of the wait to find a matching donor.

No one in her family was an identical match.

The family has been told several suitable donors may have been found abroad, but more testing is needed.

“There’s some excellent possibilities that they’re pursuing,” Melanie says.

While the Alberta government will pay for Evan’s medical costs, estimated at $150,000, the family must absorb the bulk of the other expenses.

They can’t stay at the Ronald McDonald House in Toronto because there are too many children there and the potential for germ exposure is high. Instead, the family will have to rent a furnished apartment — at roughly $3,600 a month.

Evan’s immunologist, Dr. Stephen Cheuk, said while bone marrow transplants on SCIDs patients are 90 per cent successful, it’s imperative the family stay in Toronto for him to receive the best possible care.

Cheuk said Calgary doesn’t have its own facility to do the procedure because it’s so rare. There are too few patients to justify the cost.

“One a year just isn’t enough.

To have a whole transplant unit is rare,” said Cheuk, one of only three immunologist-allergists in Calgary.

It’s estimated there are a handful of children in Canada with the same condition as Evan.

Once Evan gets to Toronto, he’ll undergo chemotherapy to prime his immune system for the transplant.

The first few months after the procedure will be critical. His body can either accept the donor’s marrow, or fight against it.

“Any little infection can potentially kill him,” said Cheuk.

Despite the challenges ahead, Melanie said she’s eager to get to Toronto. Getting there means being one step closer to taking Evan home for good.

When this ordeal is over, she’s hoping to spread the word about the importance of donating blood and signing up as a bone marrow donor.

“The awareness just isn’t there unless you’re impacted by a friend or family member,” she said. “I don’t want people to feel sorry for us. I just want to raise awareness.”

The family will hold a special donor clinic Feb. 12 in honour of Evan. The group will give blood at the downtown Canadian Blood Services offices.

Agency spokeswoman Doris Kaufmann said 80,000 new donors Canada-wide are needed this year to keep up with the rising demand.

“The number (of donors) are increasing, but we need more,” she said. “We need more of an ethnic mix.”

For more on how to donate, go to http://www.bloodservices.ca.

epoole@theherald.canwest.com

linkback url: http://www.canada.com/theprovince/news/story.html?id=cc6c4b07-8ba6-419a-b4b4-39452e7f9ebe&k=8370

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