Having heart: Heart transplant services

Staff Writer
Columbus Parent

Sophie's story:Healthy heart gives Sophie a new start

Sophie is your typical happy and healthy 10-year-old. Like other kids her age, she enjoys drawing, reading and playing with her sisters. But just two years ago, Sophie was quite different from other 8-year-olds.

While on a family vacation, it became difficult for her to breathe. When she and her family returned home to Columbus and her breathing became more labored, Sophie's parents, Jim and Sue, knew they needed to get her to Nationwide Children's Hospital's emergency department.

In the emergency department, doctors realized Sophie's critical status. Tests determined that Sophie had developed cardiomyopathy as a result of viral myocarditis, a virus that attacked her healthy heart. Normally a virus would result in a cold, or feeling achy and uncomfortable for a few days. But in Sophie's case, the virus attacked the muscle of her heart and she was experiencing congestive heart failure.

Within a few hours of her admission to the ED, Sophie was in the pediatric intensive care unit, and within 24 hours, she was on special equipment that allowed her damaged heart to rest.

Sophie's condition began to deteriorate and she was placed on a left ventricular assist device (LVAD), which helped her heart pump blood. But just a few weeks later, Sophie was removed from the LVAD in order to prevent infection. Her condition continued to worsen and little 8-year-old Sophie was placed on the transplant list.

"Hearing doctors say that your child, who had been completely healthy up to this point, is in need of a heart transplant is the last thing any parent wants or expects to hear," said Sophie's mom, Sue.

Shortly after being placed on the list, a donor heart became available and Sophie received the transplant she needed. Three months after Sophie's visit to the emergency department, she was able to go home.

Even though Sophie is back to the normal lifestyle of a third grader, she still checks in with her cardiologists and therapists at Nationwide Children's on a regular basis. Sophie's parents are grateful that Nationwide Children's was there for their daughter.

Countless other staff members were involved with Sophie's transplant and care. Teams, units and departments from across the hospital assisted with Sophie's care. From the doctors who performed tests to the nutrition services staff who prepared Sophie's and her family's meals, more than 75 employees played an active role in her care.

"We don't know what we would have done without Nationwide Children's," said Sue. "We're grateful for each physician, each nurse and every staff member who cared for our daughter as if she were one of their own."

PEDIATRIC ADVANCEMENTS: Heart transplants involve hospital-wide collaboration

Finding out that your child needs a heart transplant is difficult news for parents to learn. That's why at Nationwide Children's Hospital, collaboration across numerous departments helps patients and families prepare for the upcoming surgery and after-care.

"When I explain the program to families of patients needing a heart transplant, I describe the heart transplant program as the core of the treatment. But there are many arms branching out from that core that are necessary for the surgery and patient care to be a success," explained Timothy Hoffman, M.D., medical director of the Heart Transplant and Heart Failure Program at Nationwide Children's Hospital.

Patients and their families are assisted by staff members from ChildLife and psychology, to pastoral care and pharmacy. Often, heart transplant patients have a long stay at the hospital while waiting for a donor heart, and staff members become an extended family.

During this time, much of the heart transplant team's efforts are focused on empowering patients and their families by providing them with the knowledge they need to have a healthy and successful recovery.

"Parents are the front line of care when they leave the hospital. It's imperative that they understand what has happened and what will happen so we can work collaboratively to care for the child. They are their child's best advocates," said Dr. Hoffman.

FAST FACTS

Learning about heart transplants

  • The most likely reason pediatric patients receive a heart transplant is because of cardiomyopathy (abnormality of the heart muscle), which results in heart failure.
  • Approximately 350 pediatric heart transplants are done nationally each year.
  • Finding the right heart for a patient depends on his or her weight and blood type.
  • Patients sometimes need to wait as long as six months for a transplant, but the wait is usually an average of one to four months.
  • A heart transplant is offered only if all medical and surgical options have been exhausted.