Sixteen-year-old Lilly Addy used to have a broken heart.
Not the traditional broken heart that so many young girls deal with at her age Lilly’s broken heart wasn’t the result of a teenage heartthrob. The sophomore at Newton High School was born with a congenital heart condition known as mild hypertrophic cardiomyopathy. It is caused by a thickening of the heart muscle, which caused a blockage to the inside of her left ventricle and disrupted blood flow to her body.
Brookhaven pediatric cardiologist David Braden, MD, has monitored Lilly’s condition since infancy. While she has had to avoid participating in sports and other physical activities to prevent putting too much stress on her heart, for the most part Lilly has been able to lead a normal life. However, the reality that one day Lilly would have to undergo surgery has always loomed in the background. This past summer, alarmed by the increasing level of pressure present in her heart and a possible aneurysm of her aortic root, Dr. Braden decided the Addys couldn’t wait any longer.
Up until two years ago, a pediatric cardiac patient in Mississippi – like Lilly – would have had to travel thousands of miles to receive the life-saving surgery they required, usually at a great cost and at the family’s expense. The state’s only pediatric heart surgery program, which had been a part of the University of Mississippi Medical Center (UMMC), became inactive shortly after the untimely death of Dr. Bobby Heath in 2000. In 2008, recognizing a desperate need to get the program running again, UMMC and Batson Children’s Hospital contracted with Richard Jonas, MD, of Children’s National Medical Center in Washington, D.C., to help bridge the gap. Once a week, Dr. Jonas flew to Mississippi, operated on the less extensive cases at Batson Children’s Hospital, and sent patients with the most severe conditions back to D.C. It was a beginning, but Mississippi officials and the staff of UMMC knew they would have to do more.
In 2010, Batson Children’s Hospital recruited pediatric heart surgeon Jorge Salazar, MD, from Texas Children’s Hospital in Houston to lead the rebuilding efforts. Because it had been nearly 10 years since Mississippi offered this service, Dr. Salazar would have to rebuild the program from scratch. It was a huge undertaking, but something Dr. Salazar felt led to do.
“It was the opportunity to make a difference,” Dr. Salazar said. “There was a tremendous need and it was so obvious how much work there was to be done in terms of children who were previously not able to get care and had to go thousands of miles away or more to get care.”
Dr. Salazar began small, pulling together a handful of clinicians, nurses, doctors, and therapists. They began treating less severe conditions and escalating to the most difficult cases.
“Pediatric heart surgery is really a multi-disciplinary effort. It’s not just about surgery. Surgery is just a component of it,” Dr. Salazar adds. “It is also about the support staff working together to help in the recovery.”
By the end of their first year, the staff of the Children’s Heart Center had graduated to treating some of the most sophisticated cases. That summer, Daniel DiBardino, MD, joined the team. Dr. DiBardino studied at Harvard Medical School and previously served as chief resident of the congenital heart surgery program at C. S. Mott Children’s Hospital at the University of Michigan Medical School in Ann Arbor. Through his extensive education, he is highly trained in a complicated surgical procedure known as the Norwood operation. It is most commonly used to treat patients born with Hypoplastic Left Heart Syndrome, also known as HLHS, a condition where an infant is born without the left side of their heart. Not only is the procedure extremely delicate, but it typically must be performed within the first 7-14 days of life.
That includes patients like eight-month-old Kasey Terry from Columbus, Miss. The day Kasey and his mother Tiffany were supposed to be discharged from the hospital, doctors discovered that the left side of Kasey’s heart was significantly smaller than the right. Within two weeks, little Kasey was being wheeled into an operating room at the Children’s Heart Center for the first of three surgeries he would have to undergo. The surgery went off without a hitch and after two weeks of recovery in the NICU, he was finally able to come home for the first time.
Had the Children’s Heart Center at Batson Children’s Hospital not existed, spending a month in a hospital thousands of miles away would have proved extremely difficult for Tiffany, who was not only recovering herself from childbirth, but also has a four-year-old daughter and a husband who was serving overseas at the time as part of the army national guard.
Tiffany says the staff at the Children’s Heart Center did their best to put her at ease. “The staff was great,” she said. “Everybody took the time to tell you exactly what was going on. Even if they had to explain it fifty times, they let you know what to be prepared for.” Kasey returned to the Children’s Heart Center in August for his second surgery. Tiffany says he will have his final surgery somewhere between two and three years of age.
Lilly’s mother Michelle wholeheartedly agrees. Lilly underwent surgery on August 22 to remove the muscle causing the blockage in her heart in addition to a valve sparing aortic root replacement to repair the aneurysm. Her prognosis is good and the doctors say she should be able to lead a completely normal life with no limitations from now on.
“Lilly was in surgery from 6:30 that morning until 8:30 that night,” Michelle recalls. “During that time someone called every hour to keep us updated on what was going on. It was very comforting. The entire team worked together like clockwork.”
In a little over two years, the Children’s Heart Center has performed over 700 operations, including four heart transplants. What began as a handful of staff members and two beds in the corner of the pediatric ICU has now grown to a 16 bed pediatric cardiac ICU with a dedicated staff of doctors, nurses, and therapists. They have also managed to beat the national average for patient survival.
“We are performing as well as some of the best children’s hospitals in the country. And I cannot tell you how remarkable that is given the setting we started in,” Dr. DiBardino said. “It has been a little overwhelming at times, but it has been worth it. To be in a position where you are not just helping the patients you are operating on and their families, but really the whole state because we are offering something that they have never had before and that’s sustainable.”
Adds Dr. Salazar, “I believe this program will be the most important thing that I do. Not only in achieving excellent outcomes, but bringing that same high standard to Mississippi and for Mississippi to be able to take care of its own in a way that’s equal to the very best programs in the country. I feel really lucky to be a part of that.”