An angel’s journey
Island baby waiting for heart transplant dies, parents planning celebration of life
Thana Deagle doesn’t care if it’s a day, weeks or months; she would just like to have another minute with her daughter.
“I wish I had more time with Bexx. But she’s at peace now. She’s no longer in pain.”
Bexx, the six-month-old daughter of Deagle, of O’Leary, and Gerald Wells, of Alma, was diagnosed with hypoplastic right heart syndrome (HRHS) at birth – a congenital heart defect causing underdevelopment.
She died Tuesday, while recovering from a stint procedure at Hospital for Sick Children Toronto.
Late last week, doctors determined that Bexx had suffered a stroke. But while that carried a scary prognosis, Deagle said Bexx was expected to recover without complication.
“But her oxygen levels started to dip, and doctors were struggling to keep the flow up at its highest. They had a meeting and conducted emergency testing to see if the duct in her heart was OK. It wasn’t.
“They found that the duct was becoming narrower.”
In the past, to keep duct open, doctors treated Bexx with prostaglandins, a naturally occurring hormone. In Bexx’s case it caused swelling in her face and arms, so her skin was really tight and sensitive, creating a lot of pain for the baby.
“She was taken into the cardiac critical care unit (CCCU) and put on a medication that would draw all of the blood in her body to her lungs and heart because they weren’t getting enough. But this could also cause her other organs to fail.
“So, doctors met with us to discuss the stint procedure. It was high risk, but there were benefits that would mean she wouldn’t be in as much pain.”
The morning of the procedure, a family friend stayed with Deagle and Wells, taking photos of the family together.
The parents were given a full report after Bexx was in recovery. “Bexx did marvelously. She didn’t have any issues. Doctors said if something were to go wrong it would have been during the procedure. Her heart stress levels were going down and she seemed to be recovering,” recalled Deagle. It was a few hours before the pair got to see their daughter. “We were in there for about 15 minutes. She opened her eyes a little and saw us. I think she was waiting for us,” Deagle said, her voice beginning to shake. Then Bexx’s vitals crashed. While doctors huddled around the baby, Deagle and Wells stepped outside of the room.
“I couldn’t bear to see her decline. But I wished I had stayed, and that they had handed her to
me and that I got to hold her during her last breath,” she said, stifling a sob.
When her vitals began to crash, Deagle thought Bexx would bounce back.
“She always bounced back. She was famous for it. But I think she knew it was her time and that she was going to Heaven,” she said, again choking back a cry.
At one point her procedure was pushed back two hours. In that moment, I thought that’s fine, we won’t do it then. I wish I had listened to my gut.
“But at the same time, if she didn’t have the procedure, and a heart didn’t arrive, it may have ended the same way. And if she had died anyway, without the procedure, we would be saying we should have given her that chance.”
On Saturday, the hospital will hold a service for all of the babies who have passed away this year, Deagle and Wells plan to attend and participate.
“We also want to do something special for our 4D family. There were a lot of other heart parents, and the nurses were our cheerleaders.”
She added, “The families here with us were Bexx’s aunts and uncles and cousins. They are our family now. And the nurses and doctors, I don’t think they realize how much of a role they have in a family’s journey.”
Then once back on the Island Deagle and Wells will plan a celebration of Bexx’s life.
“That will be sometime next week. We’ll probably leave to come home on Sunday. We’ll take what we can, and then her other belongings will be stored in Toronto at a friend’s house until we make arrangements.”
Deagle hopes, by sharing Bexx’s story, people will take action and join the organ donor registry.
“Organ donation is at all time low and when others choose donation, they choose life for another baby or child or adult.”
While the pair is missing their first child, Deagle and Wells said there is a light amidst the heartache.
“I found out a couple of weeks ago that I’m pregnant. This baby is due in July. We will have this little bean to keep us busy. I know Bexx had her little hands in that.”