The nearly 40,000 babies born each year with congenital heart disease (CHD), or birth defects of the heart, face a lifetime of surgeries and procedures to keep their hearts pumping properly. But a new, first-of-its-kind, non-surgical treatment now offered at Cook Children’s Medical Center is reducing the number of open-heart surgeries needed for some teenage and adult CHD patients.

Micah Rucker, 29, is one of them. He is the first patient at Cook Children’s to receive the Harmony™ Transcatheter Pulmonary Valve (TPV). It is the first catheter-based valve delivery system designed to treat a leaky native pulmonary valve approved for use in the United States by the Food and Drug Administration (FDA).

Transcatheter balloon expandable valves have been used in patients with previously placed surgical conduits, which is a prosthetic connection between the right ventricle and pulmonary artery. The Harmony TPV is the first valve designed specifically for those patients without a conduit who require pulmonary valve replacement.

In Micah's case, his pulmonary valve did not form correctly. It remained sealed and blocked the blood flow from the heart into the lungs. By the time he was 2 years old, he had already had two open-heart surgeries—one to open his sealed valve and another to expand the size of the right side of his heart. Doctors fully anticipated he’d need another by the time he was a teen. But Micah defied the odds, which bought enough time for technological advances to turn what could once only be done with open-heart surgery into a minimally invasive procedure.

“His father and I were just hoping that by the time he needed a new valve that the technology would get to the point where he wouldn't need open-heart surgery again,” Karen said. “Because we just really didn't want that for him, especially when he was old enough to remember it. He doesn’t really remember his surgeries when he was a baby.

A leaky pulmonary valve, also known as pulmonary regurgitation, allows blood to backflow into the heart’s right ventricle instead of into the pulmonary artery where it travels to the lungs for oxygen. It’s common for children with CHD to have a leaky valve as a result of their defect or previous surgeries.

“Leaking of a pulmonary valve in a child is not usually critical in the newborn or childhood years,” said Dennis VanLoozen, M.D., an interventional cardiologist at Cook Children’s. “They tolerate that quite well initially. So we often trade that early in life in order to relieve an obstruction. But over 10, 15, 20 years of that valve leaking, that’s when we start to see the effects on the heart where we know it is time to place a competent valve.”

Open heart surgery comes with a large incision in the chest wall and requires a multi-day stay in the hospital. Recovery can be long and painful. The Harmony TPV gives patients a welcome alternative.

The procedure is performed by an interventional cardiologist in the cardiac catheterization lab. During placement, a catheter encasing the artificial heart valve is inserted into a vein through a small incision in the leg or neck. It is guided through the vein into the heart’s right ventricle outflow tract where blood passes from the heart into the pulmonary artery. Once in position, the valve is deployed, expands to fit the size of the outflow tract and immediately begins directing blood flow from the heart into the blood vessels connected to the lungs. The catheter is removed through the same vein in which it was inserted.

Patients with right side heart defects typically have irregular outflow tracts that are larger in diameter. The self-expanding aspect of the valve can treat a much wider size range and provides a better fit than previous generations of valves.

The procedure takes about two hours. With just a small incision to insert the catheter, post-op pain is minimal. Most patients are able to go home the next day and can return to their normal daily activities within a week.

“How quickly people recover and bounce back is really the exciting part of doing these in the cath lab,” Dr. VanLoozen said.

Although Cook Children’s is a pediatric medical center, most of the candidates for this procedure are teenagers or adults, like Micah.

“The tricky part about CHD is just because you turn 18 doesn’t mean we are done with you,” Dr. VanLoozen said. “Congenital heart disease is a special thing where you stick with the pediatric side of care with physicians specialized in treating birth defects in adults. Cook Children’s has a program designed just for that.”

It’s called the Adult Congenital Heart Disease program and offers ongoing care for adults with CHD. Scott Pilgrim, M.D., is the program’s medical director.

“I am very excited about this new development in transcatheter pulmonary valve replacement technology and having the ability to do these procedures at Cook Children’s,” Dr. Pilgrim said. “The prospect of another open-heart surgery is sometimes very overwhelming for the adult with congenital heart disease, as many have had multiple prior surgeries already. The Harmony valve offers a relatively non-invasive option to a much wider group of patients who were previously determined to not be candidates for a transcatheter approach. With a recovery time of only one overnight stay, the Harmony valve is a very attractive option, with many patients returning to work within a few days.”

Today, Micah is home where he lives with his mother and grandmother. He still has a few weeks until he is cleared to exercise and ride his bike, but he’s back to doing other things he loves, like helping to care for his grandmother, playing video games, writing and cooking. Steak is his specialty, much to his mother’s delight.

“I have more energy than I used to have, and I’m breathing a little better than I used to,” Micah said.

He and his mom are happy to have avoided another painful surgery. Most of all, they’re grateful for the technological advances that made it possible.

If you’re out and about in Fort Worth this evening, you may notice some recognizable landmarks glowing purple. While it’s not uncommon to see the city awash in this color in support of TCU’s Horned Frogs, there’s a different reason for the lights shining tonight. November is National Epilepsy Awareness Month and purple is the official color of the cause. In addition to Cook Children’s Medical Center, Fort Worth’s 7^th St. Bridge, Will Rogers Tower, Dickies Arena, TCU Stadium and the new City Hall (previously the Pier I Imports Building) will all glow purple.

“Epilepsy will affect one in 26 people during their lifetime, and 50,000 kids in Texas each year,” said M. Scott Perry, M.D., head of Neurosciences at Cook Children’s. “It’s my personal mission to do everything I can throughout the year, but especially during the 30 days of November, to bring awareness to this common disorder.”

Besides spearheading the effort to light Fort Worth purple, Dr. Perry can be seen sporting his purple Vans tennis shoes this month. He’ll also toss the coin at Paschal High School’s football game on Nov. 4, which will be dedicated to raising awareness of the disorder.

Currently, 3.4 million people live with active epilepsy in the U.S. If you’re interested in learning more about epilepsy, check out some of these stories we’ve covered on Checkup Newsroom:

• Cook Children’s Opens Clinical Trial For Investigational Treatment of Rare Epilepsy Disorder
• Teen Becomes First in North Texas to Undergo Landmark Brain Surgery for Epilepsy
• Landmark Brain Surgery Research at Cook Children’s Published in Annals of Neurology
• A Simple Seizure Plan Can Save a Life
• Teen Seizure Free For The First Time in 16 Years Following Brain Surgery
• Cook Children’s Patient Becomes First in North Texas Implanted With Smart Device to Control Seizures

When I returned, I checked on the children, but I only saw one. I thought, perhaps he climbed into a box, or was hiding…I called his name. No response.  I screamed his name. No response. My brother came outside.  “Boogie’s gone!” I screamed. That moment, I saw my brother, 36 at the time; tear off down the cul-de-sac with a speed I had not seen since he was the anchor on the record holding high school mile relay team. I continued to search for my son, by this time in tears and my heart pounding.

Bawling and nauseous, I felt each beat in my ears. My daughter thought it was a game and started to search as well. Someone has abducted my child! Where could he have gone in such a short time? How could someone whisk him away and be unnoticed? I was filled with anxiety and dread. Then, in the midst of my terror, I saw my son, standing in the back seat of the car, smiling, watching through the rear window, as the drama unfolded. Instant relief! I grabbed him from the car and hugged him tightly, relieved that my worst fear was not realized that day.

We comfort ourselves by saying “that would never happen in America”, yet the stark reality is that children routinely go missing in the United States. 

The 2015 stats show that there were 460,699 missing children entered into the National Crime Information Center, and 46,046 of those kids were from Texas. Of the kids in Texas, 2,769 children were from Tarrant County alone.

The National Center for Missing and Exploited Children (NCMEC) is the leading nonprofit organization that has been working for 30 years on issues related to missing and sexually exploited children. The abduction and murder of Adam Walsh (of Code Adam) in July of 1981 helped spur the formation of NCMEC. They provide valuable information on their website (www.missingkids.com) on what to do in the event of child abduction.

So as a parent, what can you do to ensure your child’s safety and even the safety of other children? The approach is common sense:

• Keep a current picture.
• When they are very young, just keep an eye on them at all times, in the store, in the mall and at the park. I have a friend who kept her son strapped into a stroller when they were out because he had a tendency to take off.  I used to think the kiddie leashes were cruel, but I get it now.
• As they age and gain more independence, parents need to create scenarios like “What would you do if we got separated in the store?” “What would you do if someone you don’t know wanted to show you a puppy?” “Give you a gift?” “Who is a trusted adult and why?” 
• In the tween and teen years, when they have access to the Internet and cell phones, rules need to be established for the use of technology.
• Sexting and cyberbullying need discussion, as well as what is and is not appropriate to share online. If they encounter anyone online who makes them uncomfortable, asks for or shows revealing photos, reports can be made to www.CyberTipline.com. Many teens are lured away from their homes by people that they meet online, in chat rooms and on social media sites.

NCMEC’s website www.Take25.org provides helpful, age appropriate information to parents about how to teach children about safety. There are also fun activities for children. In the event a child goes missing, call 911, and then call 1-800-THE-LOST.