P.E.I. infant awaits heart transplant in Toronto

Thana Deagle knew her baby had a heart condition before she was born.

That's why the mother — from western P.E.I. — travelled to Halifax for the birth of her daughter Bexx.

Now seven weeks old, Bexx was moved from Halifax to SickKids in Toronto as a two-week-old to wait for a heart transplant.

In the back of your mind, you're fighting to not go through what another family has to go through.— Thana Deagle

"From the moment she was born they were so surprised at how well she was doing," said Deagle.

"She's just a normal little baby, she's super smart and super bright. Very, very calm — she's a good baby."

Along with Bexx's father Gerald Wells, Deagle has been living at SickKids for the past month waiting for the call that a heart is available.

'That part is difficult' 

Bexx was diagnosed with hypoplastic right heart syndrome, a condition where one side of the heart is underdeveloped.

According to the province, she is the first baby waiting for a new heart since Ontario's transplant program came into effect in 2010.

The unit they are in is for children with heart defects and Deagle said there have been difficult parts to adjusting to life at SickKids. 

"There's a lot of unfortunate things. The death part is really hard to get used to. You don't want to get used to that but it's a constant."

Deagle said it is tough because a miracle for her family means another's tragedy.

"It's very hard because you know what has to happen in order for your child to get a heart, and that in the back of your mind, you're fighting to not go through what another family has to go through," she said. "That part is difficult."

Deagle said the call that a transplant is available could come anytime, but it is likely going to be a few more months because of how rare it is for a transplant to come from a baby that young.

'We just wait, and hope that she doesn't decline."

Support from away

Deagle said she tries to fill her and Bexx's days with activities like story time, music therapy, developmental activities and baby massage at the hospital.

"She's so stable that I'm allowed taking her off the unit and around the hospital," Deagle said.

She said family and the community in P.E.I. have rallied around the family in the short time they have been in Toronto.

"Gerald's niece … she went to school and was telling her teacher what was going on with Bexx, and so they did a lot of fundraising within a couple weeks, and they surprised us last Friday."  

Deagle said that effort raised $2,000 for the family and with neither parent working while they wait with Bexx in Toronto, that will have an impact.

"That's a really huge help for little Miss Bexx and the situation we're going through."

Both of Bexx's grandmothers are also planning a trip to be with the family in Toronto.

'This isn't a forever situation'

Deagle said the family would still be in Toronto for more than three months after a transplant, as they need to be close to the hospital in case there are any complications.

"We just have to stay nice and close just in case if something happens that the heart starts rejecting so they can fight that rejection off," she said.

 Deagle said thinking long-term is helping her cope with the stress of the situation.

"A lot of it has to be telling myself this isn't a forever situation — this is just right now," she said.

"Seeing how strong she is, she's been so strong. So that makes it a lot easier.

"I went through a lot in my life, so this is just another thing we have to get through."

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