Hypoplastic Left Heart Syndrome
As with any new parents, Gary and Bernadette Chapman of Birmingham were overjoyed when they welcomed their baby girl, Sadie, into the world. What they never expected was just how much their lives would change again just nine days later. Soon after Sadie was born, doctors discovered a heart murmur that started and stopped sporadically. At just over a week old, they diagnosed Sadie with hypoplastic left heart syndrome, a congenital heart defect in which the left side of the heart does not form correctly, affecting normal blood flow through the heart. “When someone says your child doesn’t have a left ventricle in her heart, it is extremely emotional,” Bernadette said. “The whole world came out from under us when we heard that.” While hypoplastic left heart syndrome is not something doctors can cure, there are surgical procedures that help the heart function better and increase blood flow to the body to bypass the poorly functioning (or nonfunctioning) left side of the heart and relieve pressure on the right ventricle. Sadie had her first of two open heart surgeries performed at the age of nine months old at UAB. The second procedure was done when she was eight. The surgeries allowed Sadie to live a “normal” childhood. “I could do essentially anything a ‘normal’ kid could do,” Sadie said. “I would just get tired faster because my body is having to work so much harder. But I did well enough that I never really had any limitations put on me. I was able to live life.” After high school graduation in 2014, life took Sadie to the Lee Strasberg Theatre and Film Institute in New York City. It is Sadie’s dream to pursue a career in theater and film. But after one semester, she began to feel ill. She visited a doctor and he immediately checked her into the hospital for tests. “They called me the next morning and said there were some things wrong with her liver so they needed to do more tests,” Bernadette said. “After a few more days with more tests, they said it was best for Sadie to come home.” Sadie returned to Birmingham and her doctors at Children’s and UAB, including Dr. Bennett Pearce, who had been with her since her initial diagnosis. After performing a catheterization, they all agreed a heart transplant was the best option. “There was another open heart surgery they could try to fix the leaking valve, but no one really thought her heart could withstand another open heart surgery,” Gary explained. “It would be like putting a band-aid on it.” Sadie and her family were not too surprised about the diagnosis. In fact, the idea had been mentioned years ago that she probably would need a heart transplant one day—they just didn’t think it would be at the age of 18. “We were glad to find out what was wrong, but ‘transplant’ is a scary word,” Bernadette said. “But it’s actually a really good word. We know it’s going to be a rough time, but we also know that once it’s done she will be better than ever, which is exciting because Sadie doesn’t really even know what it’s like to feel ‘normal.’” In late March 2015, Sadie checked into Children’s and began rigorous testing to determine the type of match needed, as well as meeting with counselors and transplant coordinators to learn about the process. While it is an incredibly stressful time for the family, they credit the hospital staff for making it easier than it could have been. “Our transplant coordinator, Sally Smith, was amazing,” Bernadette said. “She got us through all of the tests and made sure everything was done in a week. That meant a lot.” The doctors at Children’s were able to place Sadie on the donor list as a Status 1A, which means she is of the most urgent need as she is in the hospital on medication via a PICC line. “Sadie’s team of doctors is the best,” Gary said. “Dr. Pearce has been with Sadie since she was nine days old. Sadie has grown up with him, and that relationship has been immensely important. And the rest of the staff—we couldn’t ask for more. They are always happy to help in any way they can.” While Sadie is still at Children’s waiting for the transplant—hoping she can soon get back to New York City to pursue her theater dreams—she is passing the time enjoying many of the hospital’s offerings. As much as possible, she visits the Harbor Family Center to play games like ping pong, air hockey and pool. She also partakes in weekly events like pizza parties and arts and crafts. One of her favorite times is with Hand In Paw, which brings furry, four-legged friends in for a visit. “Children’s was really designed with families in mind,” Gary said. “The hospital has really gone out of its way to provide a great facility, especially for patients like Sadie who are here for weeks and even months. And on top of that, the entire staff is great. We still have a long way to go with them, and they have made it clear that they are here for Sadie. They are with us for the long haul, and we could not be more appreciative of that.” Update: Sadie received her transplant in June 2015 and is thriving.
