Transplant News Sharing // News from Source www.cleveland.com
CLEVELAND, Ohio – If Jessica Fletcher had been born two years earlier, she probably wouldn’t be alive today.
The New Philadelphia woman was born in 1983 with hypoplastic left heart syndrome, a defect that leaves the left side of the heart underdeveloped. Days later, she became one of the first pediatric patients at the Cleveland Clinic to undergo the Norwood procedure, a surgery designed to reroute blood flow to and from the heart. The first successful Norwood procedure occurred in 1981, and the surgery was still considered experimental when a doctor used it to save Fletcher’s life as an infant.
“Back in 1981, this was virtually a lethal diagnosis,” said Dr. Kenneth Zahka, a Clinic cardiologist who has overseen Fletcher’s care since 2014. “For her to do as well as she did in 1983 was really very special. The survival rate, even after surgery, at that time was 10 or 15%.”
Overcoming long odds has been a recurring theme throughout the now-37-year-old woman’s life.
After she survived the initial surgery, she had two additional procedures to reroute blood flow through her body. And though studies have found children with hypoplastic left heart syndrome are at increased risk for adverse neurodevelopment, Zahka said Fletcher stands out as being independent and having a high quality of life.
She faced the biggest challenge of her life last year after doctors discovered years of strain on her heart had taken its toll. Her heart rhythm had become unstable. Doctors tried inserting a pacemaker, but it didn’t improve her condition. She needed a heart transplant.
Fletcher’s condition had become severe enough that she needed to spend 125 days in the hospital as her name lingered on the transplant list. Doctors finally found a donor to perform her May 18, 2019 transplant. The 12-hour surgery was complicated by scarring that had developed on her heart over the years, but the procedure was a success.
Nearly 17 months later, Fletcher is back to work as an ordained minister and children’s pastor at a church in New Philadelphia. Her parents, sister and brother-in-law are pastors at the same church. Fletcher credited her family as her primary motivation for undergoing and recovering from the heart transplant.
“For me, it came down to whether I wanted to see my nieces and nephews grow up,” she said.
A series of open-heart surgeries
Hypoplastic left heart syndrome occurs in roughly one out of every 3,800 infants born in the U.S. each year, according to the U.S. Centers for Disease Control and Prevention. It accounts for roughly 8% of congenital heart defects in children. And until 1983, it was virtually a death sentence.
Fletcher was only the second infant to undergo the Norwood procedure at the Clinic and the first to survive, according to a 1983 article in The Plain Dealer. At the time, Boston Children’s Hospital was the only other hospital that had been successful in performing the surgery on an infant. Before then, children born with hypoplastic left heart syndrome had a median life span of four days.
Clinic doctors described Fletcher as healthy and “doing fine” in the months after her surgery, according to Plain Dealer archives. But she required a second surgery to redirect blood flow to her lungs, known as the Glenn procedure, approximately one year later.
Fletcher sensed something was amiss while she was growing up in New Philadelphia, and she first learned of her heart defect around age 6. Yet she credits her parents for treating her the same as her younger brother and sister outside of doctor’s office. She said her condition did not significantly alter the way she played with her siblings and her friends.
“Even though I had some limitations because of my heart issues, it did not stop me from doing everything that a normal child would do,” Fletcher said.
Children born with hypoplastic left heart syndrome can still ride a bicycle, participate in gym class or play recreational sports like tennis or basketball, Zahka said. They may be limited in playing team sports and may not have the endurance for long-distance running, though.
“Back in 1983, we were just happy when they survived,” Zahka said of hypoplastic left heart patients. “But now the bar is set much higher. Not only do you have to be able to do recreation activities and have a normal quality of life, but we also want you to have success in school and the like.”
One of Fletcher’s first two surgeries – she couldn’t recall which — caused a series of seizures which affected her brain development. Fletcher’s mother homeschooled her and her siblings, and Fletcher benefited from the one-on-one attention she received during those lessons, she said.
Outside of doctor’s appointments and taking medication, she did her best to push her heart defect to the back of her mind.
“What kid isn’t scared when there’s something wrong with them, anyways? Yet I fought through it and kept on going,” she said.
Fletcher had the final of the three surgeries performed on hypoplastic left heart patients, known as the Fontan procedure, when she was 22 years old. It improved her heart’s ability to function even further, allowing her to attend the University of Valley Forge in Pennsylvania to pursue a career in youth ministry.
By the time Zahka assumed her care in 2014, Fletcher’s surgically repaired heart had been stable for nearly a decade. Even the next three years remained “uneventful,” Zahka said. He was most impressed by Fletcher’s independence, which he said can be a challenge for families who have children with hypoplastic left heart syndrome.
“Take whatever worry a typical parent has about their child and magnify it by a million,” Zahka said. “But it’s really wonderful in somebody like Jessica because she clearly was independent, yet she wasn’t going to be abandoned by her family either.”
The heart transplant
Fletcher and her family always knew a heart transplant was a possibility. She’d been on the transplant list as a teenager, but doctors removed her because her previous surgeries kept her heart functioning. But it still hit hard when doctors told her she was in heart failure and needed a new heart, she said.
Fletcher asked for 24 hours to discuss the major surgery with her family. The worldwide survival rate of a heart transplant is 85% after one year and 69% after five years, although younger patients like Fletcher have a greater likelihood of long-term survival. She and her family ultimately decided to undergo the procedure.
Fletcher was both ecstatic and scared when she learned she’d be getting a new heart nearly six months after she was admitted to the hospital for her heart failure. But she was also sad, because she knew her family’s gain came after another family’s loss.
“I knew that someone else gave up their life to save mine,” Fletcher said. “It was a lot to process.”
The complex surgery was followed by a challenging recovery. Fletcher suffered a stroke that paralyzed her right side and four seizures as she woke from the anesthesia, which her mother and sister witnessed. She remained in the hospital for nearly three weeks until she was discharged June 5, 2019.
“There are still days when, even though I’m doing extremely well, I feel like I’m still in recovery to some extent because of all the challenges [the surgery] presented,” she said.
She was finally approved to return to work in August, but needs to be especially cautious because she’s at high risk for developing severe COVID-19 symptoms if she’s infected with the coronavirus. She’s currently overseeing small nursery class, where three or four children and their caregivers can adhere to social distancing guidelines in a large room.
Fletcher said she’s glad to be back to work and doing what she loves after her heart transplant. She credits her recovery to her Christian faith and her family — both her immediate relatives and her church community — for providing the strength she needed.
“A good strong support system in place will help you process through everything,” she said.
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