New heart for baby brings couple holiday joy
Published: Monday, December 24, 2012 at 12:44 p.m.
Last Modified: Monday, December 24, 2012 at 12:44 p.m.
Dale and Heather Thornbury got the best Christmas gift they could have ever received this year: their 5-month-old daughter Arden is at home with them in Apopka.
Not only is this Arden's first Christmas, several weeks ago marked "the first time that we've ever walked her through our door," Heather Thornbury said.
Arden was born with a rare condition called hypertrophic cardiomyopathy, a thickening of the heart muscle that makes it hard for the heart to pump properly. Arden's heart was so enlarged it was collapsing her lungs. Time was running out.
On Oct. 1, Arden was placed on the waiting list to receive a heart transplant.
"Our daily fear was that she would not receive a heart in time," Heather said. "The average wait time was 78 days for someone of Arden's size. To be honest, Arden wasn't going to have 78 days. Every beat of her old heart made her heart worse."
Twenty-one days later, the phone rang in Arden's hospital room at Shands at the University of Florida.
"We had never received a phone call in her room before. I looked at her and thought, who is going to call an infant in her room?" Dale Thornbury said.
It was one of Arden's doctors.
"I was gearing up for bad news. We had talked the week before about Arden possibly going into renal failure," Dale continued. "And then he said that we found a heart. I was ecstatic. But it was a bittersweet moment. You understand that another family has just gone through what you are trying to avoid."
The donor heart belonged to an infant boy in Louisiana.
"Technically, the child was brain dead, but his heart was still beating. I couldn't imagine the family having to say goodbye," Heather said.
That day began Arden's transplant journey.
"The most challenging part of Arden's case was without question, keeping her alive and her organs healthy before the transplant," said Dr. Mark Bleiweis, Arden's surgeon and the director of the Congenital Heart Center at UF.
The donor heart was the right size and blood type, and the valve function and heart muscle function were good, Bleiweis said.
A donor team from Shands was quickly dispatched to receive the heart.
"We don't want the donor heart to sit for a long period of time. We need to minimize the time that the organ is not receiving blood," Bleiweis said.
When the donor heart arrived, Bleiweis gave it one last inspection and deemed it adequate for Arden. Then he began removing Arden's heart and sewing in her new one.
Meanwhile, the Thornburys waited. It had been just 12 hours from the time they got the doctor's phone call to when they had to say goodbye to their daughter before a procedure that would last eight hours.
"We basically paced the whole night," Heather said.
The surgery went "textbook," according to Bleiweis.
"He gives people a second chance at life," Dale Thornbury said of Bleiweis.
Heather was afraid of how her daughter might look.
"There were wires everywhere, but she looked beautiful. She was nice and pink. As soon as Dale and I walked in, she opened her eyes really wide," she said.
And gradually, the tubes started to disappear. On Halloween — earlier than anticipated — Arden stopped needing her breathing tubes.
"She's quite the little fighter," Bleiweis said.
The Thornburys spent the next two months at the hospital with Arden, who is their first child. Dale's colleagues at Progressive Insurance donated their vacation time to him so he could take three-month's leave. Heather started a Facebook page for Arden to update friends and family members on her status, and the page has grown to nearly 4,000 friends from around the world.
When the Thornburys were finally able to bring Arden home, "We were actually anxious," Heather said. For the first time in Arden's life, she didn't have a heart monitor.
"We'd always been able to see her heart on the screen, how fast it was beating," Heather added. "Not only did we have new parents jitters, we had new parents of a heart transplant recipient jitters."
Arden takes 13 different medications seven times a day. Apart from some tummy aches, she is doing well and is starting to thrive, her mother said.
"She's bringing her hands together, reaching out and grabbing toys, rolling over and cooing a lot more," Heather said. "We're just celebrating every little thing."
Arden goes to the doctor once a week and will always have to be on immunosuppressant drugs.
"Our journey is not over," Heather said, "but it's a lot brighter."
For Christmas, people from around the world have sent Arden and her parents cards and gifts. A woman in Australia sent crocheted bibs and hats, and the Thornbury's own family members "can't wait to spoil her," Heather said.
"It's incredible to know our little girl has impacted so many people in the community," she added.
Contact Kristine Crane at 338-3119 or firstname.lastname@example.org.
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