When 14-year-old Megan Edney received a heart transplant at Levine Children’s Hospital, her doctors found something more: a rare genetic disorder that plagued her health for years. Discover her remarkable story – and the brighter future now ahead of her.

Child Health | one month ago

Solving a Mystery and Saving a Life with a New Heart

When 14-year-old Megan Edney received a heart transplant at Levine Children’s Hospital, her doctors found something more: a rare genetic disorder that plagued her health for years. Discover her remarkable story – and the brighter future now ahead of her.

Ever since Megan Edney was a baby, she’s had several, seemingly unrelated medical problems. Ear infections. Nearsightedness. Stomach problems that caused her daily pain. But nothing that suggested that a heart transplant was in her future.

Yet, that’s exactly what she needed. Last June, less than two weeks after being admitted to Levine Children’s Hospital in critical condition, 14-year-old Megan received a new heart – and a new perspective on what had been causing her lifelong health problems.

During her stay at LCH, Megan received genetic testing and learned that she had Danon disease. People with this rare condition sometimes have gastrointestinal and visual problems – just like Megan had. But the telltale sign is cardiomyopathy, or the weakening of the heart muscle.

However, all throughout her childhood, “never once was her heart even considered to be an area of concern,” says Michael Edney, Megan’s father.

In fact, without the benefits of genetic testing, Megan’s past doctors could never make sense of her symptoms. Eye specialists once thought she had a condition called retinitis pigmentosa, which caused parts of her eye to darken in some places (but turned out to be a symptom of Danon disease). GI doctors blamed her stomach pain on acid reflux or “common teenager hormonal changes,” says Michael.

Not having a firm diagnosis was “very difficult,” says Lisa Edney, Megan’s mother. “To be told, yes, there is something there, but we have no idea what it is, is not only frustrating, it leaves you feeling powerless to help your child.”

An unexpected discovery

Last May, once Megan’s stomach pain flared up again, her mother scheduled her for a gynecological exam. After an ultrasound and CT exam revealed lots of fluid in her abdomen and an enlarged heart, her radiologist made the frightening conclusion: heart failure.

Her local hospitals in Hendersonville and Asheville couldn’t deal with the severity of Megan’s condition. She was immediately transferred to LCH, where by the time the cardiology team saw her, her body was already shutting down.

“Her heart was two to three times the normal size,” says Thomas Maxey, MD, pediatric cardiac surgeon at LCH. 

Megan was immediately put on the heart transplant list. Unfortunately, Megan was experiencing other organ damage as a result of her heart not pumping well. To preserve her other organs, Dr. Maxey implanted a mechanical heart to help deliver oxygenated blood to her body. And then the miraculous happened: Less than one week later, a heart was found.

“Megan was so lucky to find a heart with just a six-day wait,” says Dr. Maxey. “The average waiting time falls between three and six months.”

Even with a life-saving heart to transplant, Megan’s care team worried whether she was strong enough to survive such a complicated surgery. And the decision to accept the heart had to be made in a 30-minute window.

“Ultimately, we felt that if we passed on this heart, by the time another one became available, it would be too late,” says Gonzalo Wallis, MD, pediatric cardiologist and medical director of pediatric heart transplant at LCH.

On the road to a new life

The transplant went smoothly. Soon after surgery, Megan began to excel – writing notes and lifting her arms, which is often too difficult for patients right after they have heart surgery. Lisa and Michael credit the LCH team with helping Megan recover.

“The compassion and professionalism shown to both Megan and our family was outstanding – beyond remarkable,” says Michael.

The head chef at LCH made Megan her favorite meal: spaghetti tacos and cheesecake. Her favorite nurses would color with Megan and do her hair for her. Dr. Wallis even brought Megan root beer lollipops when she wasn’t yet able to drink root beer – her favorite drink.

Now, with her new heart, Megan should begin feeling better than she has her whole life.

For example, Dr. Wallis explains that her heart was so weak that it didn’t adequately pump blood to her stomach. And this caused her stomach to hurt for so many years.

And for the rest of her life, Megan will need to take medicines twice daily and have follow-up appointments with the transplant team.

But Megan’s future is so much brighter, says Michael, now that she has a new heart and a diagnosis so her family can get her the proper treatment she needs. She’s already back at school, studying hard, with dreams of one day becoming a veterinarian.

“In so many ways, June 12, 2018 – the day of her transplant – is Megan’s true birthday,” says Michael.