Miracle heart transplant came amid freeze
HOUSTON — Courtney Wesser made it through the last 10 turbulent years, filled with grief, fear and anticipation, by taking it in stride.
“Just one day at a time,” she explained. “There were some days I don’t even know how I got through it all.”
Wesser was 20 weeks pregnant when she first learned that the left side of her baby’s heart was not developing properly. The diagnosis was hypoplastic left heart syndrome, a rare birth defect that affects blood flow.
“It was pretty scary from the getgo,” Wesser said.
Being a mom for the first time was already challenging. Add to that more ultrasounds, tests and discussions of what would come next to keep her child alive.
Five days after daughter Brooklyn was born on Dec. 7, 2011, the baby underwent her first open-heart surgery. The operation, known as the Norwood procedure, is the first of three surgeries to correct her blood flow.
Brooklyn then spent six weeks in the hospital recovering. She was fitted with a feeding tube, which she kept for the next six years.
At 6 months of age, Brooklyn was scheduled for her second openheart surgery, the Glenn procedure. Due to a complication during the procedure, Brooklyn suffered a stroke and had to remain in the hospital for seven weeks.
Wesser and her husband, Todd, however, were ready for a move. At the time, they lived in Mississippi and kept hearing positive stories about Texas Children’s Hospital in Houston.
“We have to move,” Wesser thought. “We have to go there.”
They settled in Splendora, and Brooklyn started seeing a new doctor right away. She still had the third surgery — the Fontan procedure — to go.
But her doctors were concerned. “They didn’t know if she would make it through surgery,” Wesser said.
“That’s when we started talking about a transplant.”
The transplant team
That’s also when Dr. William Jeff Dreyer, medical director of heart failure, cardiomyopathy and cardiac transplantation at Texas Children’s, took over Brooklyn’s case.
Hypoplastic left heart syndrome has only been treatable in the past couple of decades.
At Texas Children’s, Dreyer said, the three-step surgery process has been successfully performed for about 25 years. Before then, the outlook was dire.
“It was a diagnosis that was universally fatal,” Dreyer explained. “There were not a lot of options.”
While hypoplastic left heart syndrome requires surgical intervention, Brooklyn was not a candidate for the third and final operation.
“The only option beyond that is
cardiac transplantation,” Dreyer said.
After a battery of tests, Brooklyn was accepted as a transplant candidate in May 2016 and placed on the list as a Status 2, which meant she was in need but still able to wait at home.
“To go up in the list, she would have to get worse,” said Wesser, who dreamed of a new heart for her daughter but also dreaded her condition worsening.
For five years, Dreyer and his team monitored Brooklyn.
“We followed her quite closely in our transplant clinic,” he said. “Over time, she got sicker. Her heart deteriorated to some extent.”
Already, Brooklyn could not walk far without turning blue. She had to use a wheelchair and could only play for a bit before becoming exhausted.
“She could not oxygenate her blood,” Dreyer said. “The heart doesn’t pump with sufficient strength, and she didn’t have the level of endurance that another child would have.”
By age 8, Brooklyn became a Status 1 — the most urgent need on the transplant list.
“The doctor told us it was time to go ahead and put her in the hospital,” Wesser recalled. “She told us to go home and pack our bags.”
Again, Wesser was worried. Every time her daughter faced surgery was terrifying. But she held onto hope.
“This is happening,” she told herself. “It’s her time. She’s going to get her heart and get better.”
It was August 2020. COVID precautions meant that Wesser had to take turns with her husband being in the room with Brooklyn.
Waiting and waiting
They were prepared to wait for weeks while their younger daughter, Xena, now 8, stayed with family.
“We just kept waiting and waiting and waiting,” Wesser said. Months passed.
In December, Brooklyn caught COVID but quickly recovered. At one point, she had a tooth infection. Each time, Wesser panicked, worried that a heart would arrive and Brooklyn would not be healthy enough to receive it.
Then in February, Wesser watched the news as the winter storm began to threaten Houston. Again, she asked her doctor, what would happen if a heart came now? It was almost a premonition. She called home to check on Todd and Xena. They lost power; it was snowing outside and growing colder inside.
At that moment, the doctor came in with good news: A heart had become available. Doctors would be able to retrieve it as soon as the weather would allow.
“It was a feeling I never had before,” Wesser said. “I couldn’t believe it was finally happening.”
Then the hospital lost power and water.
No power or water
A backup generator restored the lights immediately.
“The machine was beeping,”
Wesser recalled. “I was like, ‘Oh my God, what’s happening?’ ”
Doctors had to push back the surgery, and Wesser’s concern grew.
She worried that the operation would be canceled, that the surgical team would not be able to get the heart in time and Brooklyn would lose her chance.
Dreyer explained that Texas Children’s has weathered many storms.
When the power grid went down, the backup generators were ready to spring into action.
Dreyer detailed how each transplant requires two surgical teams — one to retrieve the organ and another in the operating room with the recipient.
“The two teams stay in constant contact with each other,” he said. “You don’t proceed with the recipient until the plane has landed for the team with the donor organ.”
By the time the heart was ready for Brooklyn, the power was back on at Texas Children’s.
“We were able to make it happen, despite the circumstances,” Dreyer said.
Brooklyn was wheeled into surgery.
The procedure lasted about 10 hours.
“At 8:42 p.m., they told me her new heart took the first beat,” Wesser said. “I bawled.”
Finally, she was able to visit her daughter in the intensive care unit. Brooklyn was still sedated, but Wesser kissed her forehead and told her she loved her.
Brooklyn would stay in the hospital two more weeks to recover. In
total, her hospital stay lasted 196 days.
An incredible transformation
Wesser said when she and Brooklyn finally returned to Splendora, it was like bringing home a new baby.
“Everything was different,” she said.
Wesser had to keep a vigilant watch on Brooklyn to look for signs of rejection. If a fever developed, Brooklyn would have to return to the hospital.
Wesser was filled with wonder as Brooklyn healed. Before, her fingernails, nose and mouth were blue.
“Seeing her pink was incredible,” Wesser said.
Soon, Brooklyn was running, riding her bike and keeping up with other children.
“She wasn’t able to do that before,” Wesser said. “She’s doing amazing, and it’s so wonderful to see.”
Brooklyn celebrated her 10th birthday in December. She has a scar from her heart surgery, but Wesser said that looking at her now, you would never know what she’s been through.
Now, Wesser takes her daughter to school and is still somewhat amazed as she watches Brooklyn run inside.
“It makes me emotional every morning,” she said.
And she thinks, “Thank you, God.”