Alyson Hunter knows the pain of having an open-heart surgery. She had had three heart surgeries by the time she was 7. The first at birth to put in a shunt that would allow her heart to work well enough to go home. The next when she as 11-months old and the last at age 7, which put in a new pulmonary valve.
Alyson, 13, was born at 32 weeks gestation with VATER syndrome, which stands for all the abnormalities that come with the syndrome. For Alyson, she had an esophagus that wasn’t attached, only one kidney, a tethered spinal cord and the heart condition Tetralogy of Fallot, which made news this month when Jimmie Kimmel’s son was born with it. Tetralogy of Fallot happens when the muscle that is the housing for the pulmonary valve doesn’t grow properly.
The fix is to first close the hole where the muscle should have been and then to replace the pulmonary valve. Until now, doctors would have to do an open-heart surgery and use a donated tissue human valve.
Now, doctors at Dell Children’s Medical Center of Central Texas can insert an artificial Melody Transcatheter Pulmonary Valve, which is made of cow jugular vein sewn onto a small metal stent. They insert a catheter containing the valve into the leg and position it into the existing pulmonary valve. Then they inflate a balloon to place the Melody valve into the proper position and remove the catheter.
All of it can be done in a catheter lab in about three to four hours, rather than in an operating room. For patients this means that they go back the next day, rather than staying in the hospital for a week. It’s also a lot less pain.
For Alyson, who is one of the first three patients at Dell Children’s to have the Melody valve inserted, she had the surgery March 2, a Thursday, and went home the next day. That weekend, she was able to jump on the trampoline and play basketball. She went back to school that Monday. No one believed that she had just had heart surgery, says her mom Cammie Olah.
Before her valve was replaced both times, Alyson had been very tired. She would come home from school and sleep. It was a struggle to do all the things the Giddings Middle School seventh-grader is used to doing such as dance and cheer leading.
This time, unlike when she was 7, she came into the recovery room without any tubes or wires coming out of her. “It’s really hard to see your child like that,” Olah says of how Alyson looked after her open-heart surgeries.
This time the scar that runs from her neck to her belly button did not have to be reopened. She also wasn’t in a lot of pain. She just had a little tenderness in her leg where the catheter had been inserted.
Olah had been told when Alyson was 7 that her next valve might be like the Melody, but couldn’t believe it would actually be this different than the prior valve replacement.
“It’s a really big blessing,” Olah says. “I felt so blessed. I walked around on Cloud 9 for a week afterwards.”
Dr. Byron Holt, chief of cardiology at Dell Children’s, did Alyson’s procedure. “We’re very pleased with the results,” Holt says. All three patients who have had it done so far at Dell are doing well. Holt will be doing another two next week.
“It’s pretty impressive stuff,” he said. “It changes what we do, what our options are.”
It also avoids the expense of a long hospital stay and lessens the complications from open-heart surgery. There are still risks, of course, like rupturing the existing valve or severe bleeding or the valve not going into the right place, but Dell Children’s keeps a surgical team on call if that should happen, Holt says.
The valve is expected to last seven to 10 years. When it does wear out, doctors will be able to place another Melody, or whatever new technology is out there, right inside the existing Melody, just as they placed this current Melody inside the existing valve.
For Alyson, her experience with heart surgeries has defined what she wants to do with her life. She’d like to be a cardiac nurse. “I’d like to share my experience with other kids,” she says.
