A Grateful Heart

Published On 12/09/2015

Family finds heart care at home

Jack movie link imageTheirs is a story of gratitude.
Of a blue-eyed, curly-haired boy, born on Thanksgiving Day.
Of a healthy pregnancy and a smooth delivery.
Then, a terrifying diagnosis turned their lives upside down.

The fear came first. And then the gratitude. For people who took them in and cared for them. For a place that understood healing is more than medicine. For experts who knew how to mend a broken heart.

Just hours after the birth of their first child, Jack, Mark and Saralyn Crowell learned the devastating news that their son was born with a heart defect. His diagnosis: Hypoplastic left heart syndrome (HLHS), a condition where the heart’s left ventricle is underdeveloped and can’t pump blood to the left side of the body. The condition is usually fatal unless treated within a few days or weeks after birth.

“We were totally at the mercy of God’s will,” said Mark. “But that’s what saved Jack’s life: All those people were in place the day we walked in the door of the hospital. We were thankful for the foresight Le Bonheur had to put a team in place that could care for kids like our son.”

That team spent the past three years caring for Jack, as he underwent three major heart surgeries, extensive hospital stays and dozens of doctors’ visits. Given the chance to seek care elsewhere, the Crowells knew that Memphis and Le Bonheur Children’s offered their son the best chance. And for that, they are grateful.

BLUE BABY

After a normal delivery – and no previous need for concern – the Crowells thought they were bringing their son home. But after Jack struggled several times to feed, his oxygen levels started to fall.

He was beginning to look blue and grey, and he was quiet. then came the diagnosis of HLHS.

“Immediately your heart sinks. Because, that’s not what you want to hear,” Saralyn said. “I had a normal, healthy baby less than 24 hours ago, and now they are talking about surgery.”

Jack with dad before Fontan procedure

In a field of medicine where outcomes matter most, the Crowells started studying up on HLHS and their options. They rested easy knowing the Le Bonheur Children’s Chief of Cardiac Surgery and Heart Institute Co-Director Christopher Knott-Craig, MD, was one of best in the field – a pioneer for some of the most complex congenital heart defect procedures.

Jack had more than the fighting chance he needed.

The Crowells remember those six long days between Jack’s birth and his first surgery.

“He wasn’t doing well when he got to Le Bonheur, and we couldn’t really interact with him,” Saralyn said. “The beeping and buzzing of the monitors, I remember thinking, ‘That beeping means he’s going to die. What if he doesn’t make it?’”

Six days after his diagnosis, Jack underwent the Norwood surgical procedure, the first of three planned surgeries Jack would need.

The Norwood is the most complex and highest- risk procedure in the planned staged surgeries. With it, Knott-Craig enlarged Jack’s aorta, and hooked it to the right ventricle – which allowed blood to pump to the body. Knott-Craig is one of few surgeons in the country who perform this delicate procedure – and his success rate is higher (90 percent) than the national average (84 percent).Dr. Knott Craig in surgery

The Crowells were discharged a few days later, left to take their fragile, only child home. Now they were alone with him. Tired and stressed, they held tightly to a handful of cell phone numbers from their cardiologists and Knott- Craig. Those numbers, they say, became their lifeline – the steady reassurance they relied on when they were most scared. They called and texted Jack’s doctors when they were unsure what to do, and they always heard the support and encouragement they needed on the other end of the line.

“We offer a unique kind of care here,” said Knott-Craig. “I believe that children heal faster when we care for the entire family and pay attention to the whole child. It’s important to me that those families are at ease.”

Four months later, Knott-Craig performed the second staged procedure, a bidirectional Glenn procedure that allowed deoxygenated or “blue” blood to travel from the upper part of the body to Jack’s lungs. The second surgery provided a more “stable physiology” for Jack, said Dr. Jean Ballweg, his cardiologist.

Ballweg became a friend to the Crowells, as they lived as “normal” of a life as they could with Jack for the next two years.

“He looked normal,” Saralyn said. “He looked healthy. But he wasn’t really.”

This past July, Jack underwent the final planned surgery, the Fontan, which allows all deoxygenated blood to flow passively through the lungs. This “fix” should slowly increase Jack’s energy and exercise levels, Ballweg said.

“We are fortunate that we have the expertise to be able to care for patients like Jack here and offer the staged procedures,” Ballweg said.

A GROWING TEAM

The “foresight” that Mark spoke of to have the right experts in place when Jack needed them most is part of a growing Le Bonheur Children’s Heart institute team focused on transforming the way it cares for children and adults with congenital heart disease.

Towbin headshotEarlier this year, Le Bonheur recruited pediatric cardiologist and cardiac researcher Jeffrey Towbin, MD, to be the new Heart institute executive co-director and chief of Cardiology. Towbin came from Cincinnati Children’s Hospital Medical Center, where he built one of the country’s most respected pediatric cardiology programs. He is an expert in the field of heart disease and heart failure, and has a clear vision of growing a program in Memphis that can meet the needs of children and adults who are living longer with heart defects.

“Today, most patients can survive with a heart defect,” Towbin said. “Now, our challenge is to improve the quality of life for these children and adults.”

In the next five years, the Heart institute will expand the foundation with more depth of talent, technology and research. Leaders plan to develop 10 new super-specialized heart programs, recruit 25 new cardiologists, cardiac surgeons and researchers, and develop new areas of study.

In the areas of research, Towbin is building laboratories that focus more on personalized medicine for heart disease – using genetics to understand the best for each child.

The result: improved care for a fast-changing field that focuses on the needs of children and adults with congenital and acquired heart conditions.

INNOVATION FOR TOMORROW

While Saralyn worries most about today – whether her beautiful 3-year-old boy is healthy today – her husband only thinks about tomorrow.

Mark knows that science hasn’t found a permanent solution for Jack’s condition yet. The staged rewiring will help Jack live into adulthood, but eventually, his heart will grow tired.

Mark thinks about how he’ll teach Jack to take care of his body – to eat and drink well and exercise enough, but not too much.

“HLHS is something that unfortunately is part of Jack,” Mark said. “He will have to operate strategically and carefully on the edge of a physiological envelope. I don’t ever want Jack to feel sorry for himself. I want him to enjoy life, but I don’t want him to hurt himself in the process. It saddens me that he cannot not think about HLHS and the impact it will have on him daily. My goal is to do whatever I can to help Jack and other children like him live and thrive not just into adulthood but to age 100 and beyond.”

Mark considers scientists all over the world, including those at Le Bonheur, who are developing new mechanical devices, shunts or even growing new hearts. And he hopes that they can find better options for Jack before he needs them.

“Dr. Knott-Craig and Le Bonheur’s cardiologists have been able to get these children into adulthood, so they have bridged the first major hurdle,” Mark said. “But what about the next 40 or 50, 60, 70 or 80 years. There is going to come a point when Jack needs a transplant.”

Jack with family

In her relatively short career, Ballweg says she’s seen great strides already in how cardiologists treat children like Jack. Fifteen years ago, only about 10 percent of HLHS patients survived – most were just given comfort in their last days. Today, doctors are getting them into adulthood.

“I think we are a ways away from an artificial heart, but there is a lot of focus now on mechanical support – in developing implantable devices that can improve quality of life,” she said.

Mark knows that advancements like this only come with supported innovation. He and his wife support the Heart Institute as monthly givers, donating what they can to help spur those discoveries. He has asked his friends and family to do the same.

“It’s all about the money coming in behind the skill and the talent,” Mark said. “Nothing moves without money.” This fall, a job transfer for Mark moved the Crowells from Memphis to North Carolina. They continue to entrust Le Bonheur with Jack’s care – and know the investments the hospital is making in the Heart Institute will only build more expertise.

“Sometimes, you don’t really realize what a resource you have in Le Bonheur until you need it,” Mark said. “Le Bonheur is the children’s hospital for this city and this region. That’s what saved Jack’s life.”