TORONOTO – Looking down at her daughter Thana Deagle wonders, “How long will this last? How long will I get to hold her?”
Just minutes old and baby Bexx Wells has a big fight ahead of her.
“When I was 20 weeks pregnant Bexx was diagnosed with a heart condition: hypoplastic right heart syndrome (HRHS). Immediately we became worried for her. We didn’t know what her future looked like.”
HRHS is a congenital (present at birth) heart defect where the right atrium (chamber in the heart) and right ventricle are underdeveloped. HRHS and its more common cousin, hypoplastic left heart syndrome, are often known as half heart syndrome.
Bexx is the daughter of Deagle, an O’Leary native, and Gerald Wells, from Alma.
At 36 weeks, Deagle was admitted to the IWK for observation. She was induced at 39 weeks and went through a 16-hour labour before she met her little girl. Bexx was born at 2 a.m. on May 11.
“Pregnancy was very normal. Most of the doctors were surprised by how well I felt and how well she was doing.”
After her birth doctors conducted a dye procedure to determine if there was anything missed on the ultrasound.
“There was something. They found coronaries in her heart that were helping blood get to the left side of her heart, that were pumping backwards. She also has to have a duct – which would normally close a few days after birth – open by using the drug prostin in order for her body to get oxygen.”
Before this diagnosis, Deagle and Wells were expecting Bexx to undergo three surgeries to help improve her quality of life.
Now at two-weeks-old, Bexx has her own room at the Hospital for Sick Kids in Toronto and is on a wait list for a heart transplant.
“She’s been on the list for about a week. It’s a long wait. It could be a few weeks or six to eight months. But doctors don’t know how long she has. If her coronaries collapse, she’ll essentially have a heart attack.”
Deagle says, as a parent, discussing Bexx’s care plan for the worst-case scenario was heartbreaking.
“It’s something no parent wants to talk about. The doctors will perform some life-saving procedures. But we need to be prepared. Every moment with her is bittersweet. It’s kind of a hope for the best, prepare for the worst situation.”
Deagle says other than her heart and pulmonary conditions, Bexx is a striving baby.
“She’s on par with all her little milestones and is eating really well. Her appetite surprised doctors because eating is usually a struggle for babies with a heart condition.”
There is still no answer to why Bexx developed HRHS.
“We’re having genetic testing completed to see if there were any hereditary markers. Not having an answer has been really frustrating.”
Currently, neither Deagle or Wells are working.
“Shortly after we learned I was pregnant, Gerald had a heart attack. And there have been some issues following that, so he hasn’t been able to work. And then being in Toronto, finding a job would be too difficult for me because I need to be here for Bexx.”
A GoFundMe page has been started to help Deagle and Wells with the cost of staying off Island while Bexx is treated at Sick Kids.
If nothing else, Deagle hopes Bexx’s story sheds light on the importance of organ donation.
“It’s so important and critical for so many people. It can save so many lives.”
To donate in support of Bexx and her family go to https://www.gofundme.com/help-support-baby-wells-and-family.
