October 14, 2005

Heart Walk 2005: Young transplant patient’s story highlights cardiology advances

Featured Image

LeAnn Lewis hugs her daughter Jenny, 7, who had a heart transplant at Vanderbilt shortly after she was born. The American Heart Association Heart Walk will be held Sunday, Oct. 23, on the Vanderbilt campus.
photo by Dana Johnson

Heart Walk 2005: Young transplant patient’s story highlights cardiology advances

Heart transplant patient Jenny Lewis enjoys gymnastics and other activities.
photo by Dana Johnson

Heart transplant patient Jenny Lewis enjoys gymnastics and other activities.
photo by Dana Johnson

Two months after the birth of their second daughter, Jennifer, LeAnn and Larry Lewis were not sure how to pray for her healing.

With a heart transplant pending, the parents knew that saving their daughter would mean the death of another child.

“You want the very best for your child,” said LeAnn Lewis. “But you also know what that means for another family and their child. We said a lot of prayers, but we didn't pray for a heart for Jenny. Instead we prayed for God to do what was best for her.

“How do you pray for someone else to go through the pain of losing a child? How do you do that?”

Jenny was born a healthy baby girl on Sept. 17, 1998. But nine days later, she developed a very high fever, sending her to the Emergency Department at Vanderbilt University Medical Center.

The Lewis' learned their daughter had viral myocarditis, an inflammation of the thick muscular wall of the heart, which if severe enough can weaken the heart's pumping action. This affects the heart's ability to supply the body with oxygenated blood.

Doctors told the Lewis' there were three treatment options. Jenny required the third option, a transplant. It took three weeks for a heart to become available and on Nov. 11 she received a second chance at life.

Jenny's new heart did not work immediately. Doctors put her on an ECMO machine, which did the work for her heart and lungs.

Six weeks after the transplant Jenny was released from the PCCU and transported to a regular room so that her parents could learn to care for her once they returned home.

“It was such a long road,” LeAnn Lewis recalls of the time in the hospital. “She had some bad times while waiting for a heart. At one point we signed a DNR (Do Not Resuscitate). She was on a ventilator prior to transplant and after just to sustain her. But once she began breathing on her own and she received a feeding tube, her recovery was much quicker.”

Jenny spent nearly four months in the hospital. She was developmentally delayed — crawling closer to age 1 and walking closer to age 2. She received speech and physical therapy weekly, developed hearing loss in her left ear and a “lazy eye.”

But you wouldn't know it today.

“She is doing great,” said LeAnn Lewis. “She is in the second grade, makes As and Bs and has tested ahead of her age group. She takes gymnastics. The only time I notice she can't hear well is when she has the phone on her left side. I just tell her to switch it to the other ear so she can hear better. And you don't notice her eye with her glasses on. She has a lot of scars and asks me about it. I tell her, but I don't load her up with too much information.”

LeAnn Lewis said her daughter knows she was very sick as a baby and that she received a new heart. She is very familiar with the daily routine of taking her medications.

“We don't want to make a big deal out of it because we want her to live as normal a life as possible,” her mother said. “It's not a big secret, but we don't want to make her whole life about that. But on the other hand, if we can be of any help to another family by sharing our experience we will.

“It is therapeutic to talk about it and after several years there are still painful memories, but there is a lot of joy that outweighs that.”

LeAnn Lewis knows her daughter is alive today because of the research that is funded by the American Heart Association.

The ECMO machine that worked as her daughter's lungs and heart for two days is a direct result of that research. She is very aware of how far transplant procedures have come in the past 10 years.

“We know that without the technology and expertise in transplant, Jenny would not have survived. This is a child who can live a happy and normal life as a result of such research and advances in medical science.”

On Sunday, Oct. 23, more than 10,000 walkers will participate in the American Heart Association's Heart Walk held on the Vanderbilt campus. The goal for this year's fund-raiser — the third such largest in the nation — is to raise $300,000.

Heart Walk funds help with educational and awareness programs and research in the fight against heart disease and stroke, while supporting work being done here by VUMC investigators. Vanderbilt is the second-largest funding recipient of AHA research funds in the country, with 29 awards totaling nearly $4 million.

Debra Dodd, M.D., associate professor of Pediatrics at the Monroe Carell Jr. Children's Hospital at Vanderbilt, will walk in the event to support both Vanderbilt and national efforts.

As a pediatric cardiologist, she has witnessed the advancements made since she joined the staff at Vanderbilt in 1984. She said ECMO was not used in the Children's Hospital until the late 1980s.

“Jenny's condition is uncommon; moreso in infants,” said Dodd. “The type of infection she had typically results in diarrhea or a runny nose. Some people develop problems with their heart function. We probably see five or six patients a year with this kind of heart condition.”

Dodd is also proud of how far cardiology treatments have come.

“Transplant is one of the areas that is changing markedly,” she said. “Every other year there are new medications available. There is no question that the medications available today to help prevent rejection and keep our patients healthy are much better than what we used 15-20 years ago. We are able to prevent rejection with fewer side effects.

“Also, in pediatric cardiology, we have a goal — we don't want to go as far as transplantation in all cases,” Dodd said. “Research toward finding other solutions to structural and functional problems of the heart is expanding. Research is important on both ends of transplant — before and after.

“We are so excited about how well Jenny has done. She was so sick before and after the transplant. Now she is such a happy little girl,” she added.

Jenny Lewis is one example of how work funded by the AHA helps cardiology patients.

“We live with this every day and sometimes I lose sight of how special she is because she can be an inspiration for someone else,” her mother said.