Teen celebrates with family of heart donor who helped him beat odds

(MCT) -- ST. LOUIS — Ronald Murphy wasn't expected to make it to his 18th birthday, so his family celebrated on a recent Saturday with a big surprise party. But Murphy wasn't the only guest of honor. The family of the infant girl whose heart keeps Murphy alive was there, too.

Murphy was born with a rare birth defect called hypoplastic left heart syndrome, which means his left ventricle was not fully developed. Doctors knew of his condition from prenatal ultrasounds, and he was placed on a waiting list for a heart transplant soon after his birth.

Nearly one in 100 babies is born with a congenital heart defect, and 10 percent of those are considered candidates for transplants because the defect can't be corrected with surgery or other treatments. Hypoplastic left heart syndrome is no longer considered an automatic cause for transplant, in part because of new surgical techniques but also because of a shortage of donor hearts.

When Murphy was born in 1996, a transplant was his only chance for survival. At age 11 weeks, an infant heart became available. Kaylee Kunkel had died in Illinois two weeks after being born with multiple health problems, and her heart was sent to St. Louis Children's Hospital.

The families first communicated through letters. They met when Ronald was a toddler, which he doesn't remember. On that recent Saturday, they met once again to celebrate Ronald's birthday, a reminder that their daughter would have been the same age.

Kevin and Michelle Kunkel along with daughters Kenzie, 14, and Maddy, 11, drove from Pecatonica, Ill., near Rockford, because "18 is a big deal," said Michelle Kunkel.

The Kunkels said it was not a difficult decision to donate Kaylee's heart and liver. The young boy who received Kaylee's liver died within five years of the transplant. But her heart has reached adulthood inside Ronald Murphy.

"You have that connection," said Michelle Kunkel, who said it was important to know what happened with Kaylee's organs.

There are 21 children currently on the waiting list for a heart transplant at St. Louis Children's Hospital. Last year, the hospital performed 16 of the surgeries. Babies who receive transplants in the first month are thought to have a better chance of survival than their older peers. Children with donor hearts are at higher risk of developing cancer, kidney disease and diabetes, among other complications. Still, more than 80 percent can be expected to survive the first year, and about 60 percent are still alive at age 25.

"It's what you want for them — you want them to have the most normal life they can," said Donna Marshall, a transplant nurse at Cardinal Glennon Children's Medical Center in St. Louis.

Dr. Ken Haller, Murphy's pediatrician at Cardinal Glennon, called him a "focused, dedicated kid" who has fierce advocates in his parents. Murphy has medical checkups every three months.

"It reminds me of what a privilege it is to be a pediatrician and be there for kids at all stages of their lives," Haller said at the party.

Murphy is studying for the high school equivalency test after missing many school days for medical appointments and illness. After dinner, cake and confetti at his surprise party, he danced with Michelle Kunkel to Nat King Cole's "If I Give My Heart to You."

"Knowing their daughter's heart is inside me, I consider them my family, too," Murphy said.

Murphy's parents, Catherine and Ronald Murphy of Bridgeton, said it was hard to find words to describe their emotions on seeing their son dance with his donor's mother, but they started with "grateful."

"Just to know because of her decision, Ronald is here," Catherine Murphy said. "Her child's heart beats inside of mine. My son's life goes on because of her daughter."

The Murphys put together a memory chest for the Kunkels with trinkets and photos of Ronald as a baby and child. A plaque inside read: "A mother holds her children's hands for a little while, but their hearts forever."

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©2014 St. Louis Post-Dispatch

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