Family, friends celebrate baby Lyla’s second chance at life with new heart

There’s something a little different about 9-month-old Lyla Valentine than there was 15 days ago. The difference is a small, four-inch scar on her chest – and the new heart beating inside it.

Lyla, granddaughter of Squires residents Kathy and Monty Valentine and daughter of Rocky and Beanna Valentine of Rogersville, was born Aug. 24, 2011, healthy and strong.

“Until she was about 6 months old, she was thriving,” said Kathy, who works as office manager for her brother-in-law, Gainesville dentist Norman Klayman. Monty Valentine is maintenance supervisor for Ava Schools.

In fact, said Lyla’s dad, Rocky, at her six-month checkup on March 1, "everything looked great, and she was in the 90th percentile for height and weight."

But five days later Lyla seemed to have a little cold, and she was making a "little grunting sound" when she breathed, Kathy said.

On March 6, Breanna took Lyla back to Springfield to see the pediatrician, who also assumed it was just an upper respiratory infection - until he looked at Lyla's chest x-ray. Then the doctor told Breanna that Lyla needed to be admitted to the hospital.

For Kathy, Lyla’s experience had a scary familiarity. A few years ago, Rocky was a healthy, 13-year-old seventh grader in Ava. “Then, in January of that year, he got the flu,” Kathy said. “He was still sick in February and was coughing up blood. In March he was diagnosed with dilated cardiomyopathy.”

Doctors thought the condition was linked to the infection that had caused Rocky’s flu. “We took him to the doctor in Ava again, and he said, ‘You have to go to Springfield to the heart specialist.’ We went that day. After an echocardiogram and an x-ray, the specialist in Springfield said we had to take him to Children’s Hospital in St. Louis,” Kathy said. It was nearly 2 a.m. by the time the terrified parents arrived in St. Louis with their son. The next day they were stunned to hear doctors there say Rocky needed a heart transplant.

A few weeks later, that transplant was performed. Rocky went back to school that fall and was heavily involved in sports as a student at Ava High School, becoming football quarterback and also playing basketball and baseball.

He graduated in 2005 and then attended Mid-America Nazarene University in Olathe, Kan., graduating with a history degree in 2008. He later became certified to teach. Now married to the former Breanna Grier, he works as a coach and teacher in Sparta. Breanna is a registered nurse working at Mercy Hospital in Springfield – where Lyla was admitted on March 6.

The cardiologist came to her room after seeing the test results and abruptly told Breanna and Rocky their daughter had an enlarged heart and that her heart was "in failure," Rocky said.

It seemed unimaginable that they could be going through the same terrifying ordeal Rocky’s parents had endured in 2000.

The doctors told Lyla's parents she needed to go to St. Louis right then – she couldn’t wait. They wanted to send her by air evac, but it was too windy for the helicopter to fly that night. So they chartered a medical airplane to take her. "That’s how scared the doctors were,” Kathy said.

Lyla spent a week in the St. Louis hospital and then came home. “The doctors wanted to see if the oral medicines would work. But two months went by, and she didn’t gain any weight,” Kathy said.

The medications were allowing her heart to function, but only to the point doctors described as “compensated” heart failure, Rocky said.

On the last day of his school term, May 16, Rocky and Breanna took Lyla back to St. Louis for a checkup. Doctors admitted her to the hospital and started her on IV medications.

"They had been talking about a heart transplant, and putting her on those meds meant she moved up on the waiting list,” Kathy said. “She got really sick then. They had to put her on a breathing tube, and that moved her up even higher on the list.”

At one point the family was alerted that a potential heart had been found, only to learn a few hours later that it wasn’t a match after all. “We were all headed up there, and Rocky called when we were about 10 minutes from the hospital and said, ‘It’s not going to work,’” Kathy said.

Then, 15 days ago, on May 29, Kathy and her sister, Sue Klayman, were again making the trip to St. Louis, hoping to visit Lyla and her parents, when another call came in. “About noon Rocky called and said, ‘I think we have a heart.’ By five o’clock, Lyla was in surgery,” she said.

Rocky and his daughter had different surgeons, but the same doctor who had managed Rocky's transplant care was now overseeing Lyla's.

As church friends and family members back home in Ozark and Douglas counties activated prayer chains, friends and family hurried to St. Louis and waited anxiously at Children’s Hospital for news from the operating room. “The nurse would call periodically and tell us what was happening,” Kathy said.

Then came the word everyone had been waiting for. Rocky relayed the message on his Facebook page that evening: “The heart is in and beating.”

When Kathy saw her granddaughter the next morning, “she still had the breathing tube, but she looked good,” she said.

Lyla and her parents left the hospital Friday, 10 days after the transplant, but stayed in St. Louis for follow-up exams. They're staying in Ronald McDonald House, just as Rocky and his parents did after his transplant.

“Lyla’s doing great,” Kathy said. “Saturday, she and her parents went to a Cardinals game.”

Now that both father and daughter have needed transplants, doctors may be considering whether there was a genetic link causing Rocky’s and Lyla’s heart problems, rather than the flu and a cold, Kathy said.

While Lyla’s family celebrates the new gift of life she’s been given, they’re also very aware that their joy comes as another family grieves a tragic loss. “We don’t know anything yet about the donor’s family,” Kathy said. “Everyone has to agree before information is exchanged. It used to take six months or longer. I don’t know what the situation is now.”

She does know that Rocky’s donor was an 18-year-old Alabama girl who drowned in the ocean. “We’ve spent years communicating back and forth with her family,” Kathy said.

"It's really made an impact on me - twice now," Rocky said. "I hope it helps other people see how important organ donation can be."

The family has insurance, but other expenses, including those related to travel and living away from home, are mounting. Family and friends are planning fund-raisers to help the Valentines pay some of those expenses. Two benefit co-ed softball tournaments are being organized: the first is on Saturday, June 23, at the Ava ball field (contact Tina Wallace for information, 417-683-0598), and the second is on Saturday, June 30, at the Sparta baseball field (contact Michael Willis, 417-634-5626). Both will feature concessions, raffles, hitting contests and other fund-raising events, and the participating teams’ will also contribute entry fees.

Rocky hopes he can bring his family back to Rogersville by the end of the week. They’re eager to get home. "We've been amazed at how people have rallied around us, supported us and prayed for us," he said. "It's really been eye-opening to realize what great people we live around in this area."

<p>Lyla Valentine was born Aug. 24, 2011, and underwent a successful heart transplant on May 29.</p>