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TORONTO - 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.
Shortly after her daugher’s death, Deagle posted in the public Facebook group “Bexx’s Journey to a Healthy Heart” to let those who had been following her story know what had happened.“
At 6 p.m., Bexx was taken home to heaven to live with the angels. Her heart was too weak and suddenly under so much stress. She fought so, so hard my brave, brave baby,” Deagle wrote.
Deagle and Wells spent the night on the ward that Bexx had stayed in for six months.
“We stayed on 4D [the hospital wing she lived in] with Bexx by our sides with the family of nurses and doctors she knew. They set up a room and made sure we had everything we needed. We cuddled her with no cords and no beeping. We took pictures and we prayed, and we loved her,” she said in another post.
The community is showing its support for the family – on the group page, dozens sent their condolences and heartfelt thoughts to the mourning parents.
“Take all the time you need to grieve, there is no time line on recovering from the loss of a child. Know that many will lift you up in their prayers and that Bexx will forever be a part of those that followed her journey. After this storm comes the gift of your Rainbow baby and I am most certain that Bexx is telling her little sister or brother all about how amazing their Mama and Daddy are at this very moment,” stated one comment.
Now, days after saying goodbye to their daughter, Deagle and Wells are grieving, battling with ‘what if’ questions and trying to make arrangements to come home to P.E.I.
“Those questions and regrets are the biggest things we’re dealing with right now. We keep asking ourselves what if we decided not to go through with the procedure. 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.”
Supporting Bexx’s family
A fundraiser has been started to help an Island couple bring their daughter home from Sick Kids hospital in order to have a funeral service on the Island with family and other loved ones.
On Tuesday, Nov. 20, Thana Deagle wrote a public post about her daughter Bexx’s fight for a new heart, sharing that her daughter’s battle had come to an and that the six-month-old passed away. Bexx was on the transplant list for a new heart.
Funds are being raised to help with the cost of returning to P.E.I. and a funeral service. Funds can be transferred to firstname.lastname@example.org.