TORONTO – Baby Bexx Wells still has a long road ahead of her. After three months on the transplant list, the young Island baby is still waiting for a new heart while living with symptoms from treatments that keep her alive.
Bexx is the three-and-a-half-month-old daughter of Thana Deagle of O’Leary and Gerald Wells of Alma.
“We don’t know when Bexx will get a new heart. It could be tomorrow, next week, six months or longer. She’s pretty high up on the list, but there is still a bit of wiggle room,” said Deagle.
While pregnant, Deagle and Wells learned that their daughter had a heart condition: hypoplastic right heart syndrome (HRHS).
HRHS is a congenital heart defect where the right atrium and the right ventricle are underdeveloped. Bexx also has coronary arteries that pump backwards and a duct that needs to remain open in order for her body to receive oxygen.
“There are no surgeries to fix that,” Deagle explained.
After her birth, Deagle described Bexx as thriving. She was a normal baby who would wiggle and smile. Now she is quiet and needs morphine to help with the pain that comes as a side-effect of the life-saving treatments.
“She has to take this hormone called prostaglandin to keep the duct open. But while it does its job, it also causes her a lot of pain. It’s causing the tissues in her arms to fuse together, which curves them, and it’s causing other bone displacement,” Deagle explained.
Prostaglandin is a naturally occurring compound in the human body found in almost all tissues.
“So, she’s on constant morphine. And it’s also causing a lot of swelling in her face and arms, so her skin is really tight and sensitive.
“It’s changing her features. It’s causing thickening of her eyelids, face and arms.”
This week doctors will insert a g-tube (gastrostomy tube) to help with Bexx’s feedings.
She is also on high-flow oxygen and receives blood transfusions every few weeks to deal with a hemoglobin issue. She also wears foam braces on her arms and legs to halt any further bone displacement.
Deagle says she and Wells are doing their best to stay strong.
“It’s been stressful to see her go downhill so quickly. Neither of us would have gotten through this without each other. Having this support system has been a great help.”
The couple are currently living in a condo in Toronto.
“We discussed one of us coming back to the Island for work on and off, but with the situation as it is, we didn’t feel comfortable leaving. But the lifestyle change is like being thrown into the ocean. You go from P.E.I. where everything is slow and small to this big city that’s all hustle and bustle. And then there is hospital life that’s just a whirlwind.”
So far, Bexx’s heart function hasn’t changed since birth.
“That’s a good thing, but we don’t know how long that will last.”
To follow baby Bexx’s progress, go the Facebook page: Bexx’s Journey to a Healthy Heart. In addition, a GoFundMe page has also been started to help the family: https://www.gofundme.com/help-support-baby-wells-and-family.
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