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

Thana Deagleknew 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 Torontoas 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 withBexx's father Gerald Wells, Deaglehasbeen living at SickKidsfor 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 isunderdeveloped.

According to the province, she isthe 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 defectsandDeagle saidthere havebeen 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."

Deaglesaidit is tough because a miracle for her family means another'stragedy.

"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'tdecline."

Support from away

Deaglesaidshe tries to fill her and Bexx's days with activities like story time, music therapy, developmental activities and baby massageat 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 withneither parentworking while they wait withBexxin 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'sgrandmothers are also planning a trip to be with the family in Toronto.

'This isn't a forever situation'

Deaglesaid 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.

Deaglesaid thinkinglong-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."

More P.E.I. news