‘I’m dreaming for the first time in my life’: Teen living better life after experimental surgery

Posted at 6:06 AM, Sep 18, 2019
and last updated 2019-09-18 10:27:47-04

GRAND RAPIDS, Mich. — Ask any kid what they want to be when they grow up, and most of the time they might have an answer or at least an idea.

But, for one teen living with half a heart, it's a question he never let himself think about until now.

"I knew I had something wrong with me, but I didn't know what it was until I was older," 16-year-old Landon Tiemeyer told FOX 17.

On any given afternoon, you'll find him on the golf course with his older brother. It's a place he can be just like every other team, enjoying some friendly, sibling rivalry. But off the green, Landon's childhood was anything but ordinary. It all started when his mother, Amber Tiemeyer, was pregnant with him.

"When I went to a routine ultrasound, they said they couldn't find a portion of his heart," Amber Tiemeyer remembered. "The doctor told me in the following ultrasound that I needed to go home and pray for a miracle if I wanted my child to survive. Our prayer at that point was, whether Landon would live a day or 100 years, that his life would make an impact."

Landon was born with Hypoplastic Left Heart Syndrome, or HHS. It's a rare, congenital heart defect in which he only had one pumping chamber, whereas the average healthy heart has two.

By the time he was four, Landon had six open heart surgeries. But, it never fixed his heart entirely so he just lived uncorrected.

"I always loved to play basketball. I used to have to take a ton of breaks, so many I couldn't count," Landon remembered. "It was hard because all the other kids could play and continue to have fun and I'd have to sit out."

Landon said his condition robbed him of his dreams; those dreams of homecoming, college, even what he wanted to be when he grew up. He never let himself even think about he future.

That was, until his family met Dr. Joseph Vettukattil, of the Congenital Heart Center at Spectrum Health Helen Devos Children’s Hospital.

"That was the first time anyone had ever mentioned to us there was another option other than a transplant," Amber Tiemeyer said.

Vettukattil came up with an experimental procedure that had never done before and would even need the approval of the Food and Drug Administration.

It required implanting a stent through a catheter into Landon's vein to connect his pulmonary artery with the vein that brings blood form the lower part of his body back to his heart. It was a minimally invasive but risky.

While his family was nervous at first, the procedure worked perfectly.

Landon is just now beginning to let himself start thinking about the future.

"He was just surviving day-by-day to now, he went to drivers training this summer and is talking about getting a job, graduating high school," Amber Tiemeyer said. "Just the other day, he said 'mom I'm dreaming for the first time in my life and that's priceless. We believe he is a miracle story."

The Tiemeyers now want to share Landon's experience, letting other families affected by HLHS know there are other options aside from a heart transplant for their child.