Island infant dies awaiting heart transplant

An Island infant who was waiting for a heart transplant has died. 

Baby Bexx was born at the IWK in Halifax May 11 and was moved to Toronto SickKids at two weeks old. Her parents Thana Deagle and Gerald Wells of West Prince knew Bexx had a heart condition before she was born.

The last thing they should have to worry about is money and finding a job two weeks after their child has died.— Samantha Audia

"It doesn't feel totally real," said Samantha Audia, a friend of the couple who spoke to CBC News by phone from Ontario on behalf of the family. They met at SickKids as Audia's daughter Rosie was also awaiting a transplant.

'Very shocking'

As Bexx waited for a heart, her health deteriorated and she was in a lot of pain, Audia said.  

On Tuesday, doctors tried what Audia called a life-saving procedure to put a stent in Bexx's heart.

"Just to buy her more time, this was not going to fix her broken heart," she said. 

The procedure went fine, Audia said, but as Bexx began to come out of post-operative sedation, her body shut down and she died. Doctors are not sure exactly why, Audia said. 

"It was just very shocking," because Bexx appeared to have pulled through the nerve-racking procedure and be recovering, Audia said. "It was quite unexpected, the way it ended up happening." 

The couple's emotions are "all over the place" right now as they remember Bexx, Audia said.

Community rallies

Deagle and Wells gave up their apartment in P.E.I. and lived at SickKids for the last several months, looking after and spending time with Bexx, and they weren't working.  

Now the community is rallying around them with a fundraiser — people want to ease the pressure for the couple to find work immediately.

"They're going home right before Christmas — they need to get home and be able to breathe and grieve," Audia said. 

"The last thing they should have to worry about is money and finding a job two weeks after their child has died." 

The funds may go toward a P.E.I. funeral for Bexx, as well as flights and a down payment on an apartment, Audia said. 

The details on the fundraiser are on a Facebook page, Fly Free For Baby Bexx.

"I really hope that people don't forget about them when they get home — they're going to really need the support," Audia said. "The first year is going to be the hardest for sure."

Remembering Bexx

"She's very worried that with Bexx being born here, spending her whole life in a hospital and dying at such a young age that Bexx will be forgotten — she doesn't want everyone to forget about Bexx," Audia said of Deagle. Deagle has yet to decide exactly how she will memorialize her baby, she said.

Her own daughter Rosie did receive a heart about four months after she was born. 

The couple has some good news — Thana is pregnant. 

"She was talking about how she thinks this baby's going to save her in this horrible time," Audia said. "As this initial shock wears off, I think and hope that that will keep helping her get through." 

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