This Tiny Heart Beats On

"Score!" shrieked Owen Schiff as he threw up his arms in triumph. Using a celebration style learned from big brother Brayden, he was celebrating their great play during a game of ball in the family's cozy kitchen. To the casual observer, the bundle of energy with an infectious giggle and huge brown eyes looks like a perfectly happy, healthy 18-month-old child. Mostly, he is. But even at such a tender age, Owen is already a survivor.

"Our first hint of a problem came when I was 20 weeks pregnant," explained mom Kirsten Schiff. "During the level-two ultrasound, they found that our baby had an abnormal heart. The walls that normally separate the heart into four chambers did not develop completely. Surgery would be needed to create those walls." A fetal echocardiogram, performed by Bettina Cuneo, M.D., director of perinatal cardiology at who works out of Advocate Hope Children's Hospital as well as two other Advocate hospitals, showed an atrioventricular canal defect.

A new hope
And so began the emotional roller coaster of Schiff's third pregnancy and the first year of her younger son's life. Since they knew about the heart defect in advance, Kirsten and husband Ryan had time to research the best options for their child's medical care. They had their first meeting with Michel Ilbawi, M.D., director of pediatric cardiac surgery at Hope Children's Hospital, while Kirsten was still pregnant. The good news was that the defect was indeed reparable with surgery. They were grateful to learn that Hope Children's Hospital was a leading specialty center for children with heart defects all over the Midwest and Dr. Ilbawi himself has performed nearly 20,000 surgeries over the course of his career. Last year alone, surgeons at Hope performed nearly 300 pediatric heart surgeries (28.8 percent of the state's total). Additionally, the hospital is also a leader in research. The pediatric heart surgical team at Hope Children's Hospital has pioneered numerous treatments and participates in a wide variety of clinical trials for other new advances. For example, interventional cardiologists at Hope recently started using a new device to plug holes in the heart's atrial septum without open-heart surgery. They have also developed innovative treatments for hypertrophic cardiomyopathy, an inherited disorder in which the walls of the heart muscle become enlarged and obstruct blood flow. With such comforting credentials behind the physicians, the Schiffs chose Hope to take care of Owen.

Kirsten's labor and delivery were almost perfectly normal. Owen spent his first 12 hours in the Neonatal Intensive Care Unit, but came home with his mom on time. At his first check-up with Dr. Cuneo, his early congestive heart failure was already evident, though. "Our biggest struggle in the beginning was getting Owen to gain weight," explained Kirsten. Because his heart was working so hard, he burned up the energy before it was converted to weight. Dr. Cuneo prescribed three different medications for him, and plans were confirmed to perform the major repair surgery when Owen was 11 weeks old. By the time of his surgery, he still weighed only 10 pounds.

Owen's surgery went well. His first stop post-op was the Pediatric Surgical Heart Unit (PSHU), a seven-bed intensive care unit dedicated completely to pediatric heart patients which is one of the only of its kind in the Midwest. In helping the family to cope with the stressful times and trauma of caring for a critically ill newborn, the staff made all the difference. "The nurses in the PSHU were so caring and so knowledgeable, it was incredible," said Kirsten. "When Owen was moved out of the PSHU, I almost didn't want to leave because of the support they gave me and my family. They completely understood what we were going through and made us feel confident because they've been through this all before -- often. There were so many wonderful nurses, but Joan Musso especially was very nurturing and supportive. And Patty Wojtyla makes a difference to so many people!"

After the first week, Owen was moved to the regular Pediatric Intensive Care Unit for another week and then finally home. For nearly five months, a friend of the family moved into the Schiff's Glen Ellyn home to help take care of Owen's older sister Mackenzie, now 8, and brother Brayden, now 5, and grandparents provided extra support. To avoid infections with Owen's delicate immune system, the family stayed close to home for those first months. "I felt like we were quarantined!" joked Kirsten. A physical therapist came to them to help ensure Owen's developmental growth stayed on track.

'A new kind of normal'
These days, the Schiff family is back to their regularly scheduled busy social life, and Owen is thriving. He's busy chasing after his older siblings, perfecting his indoor soccer skills and inhaling Girl Scout cookies. Owen's curious mind and fast-moving hands keep the entire family on its toes. "We have to watch him all the time," said Kirsten, laughing. "He's always flipping switches and taking things apart."

For now, Owen's health is still delicate. "We're back to normal, but it's a new kind of normal," said Kirsten. He has regular quarterly appointments with Dr. Cuneo at Hope to monitor his heart's growth. He takes three medications regularly and has to be woken up twice during the night to keep on his medication schedule. Sometime within the next year, he will be back in the PSHU and Dr. Ilbawi's capable hands for his second surgery. "He may spend his life having mitral valve surgeries every once in a while as he grows, but he's alive and well," said Kirsten. "We're not looking forward to the next surgery, but at least we know what we've gotten into this time around."

'A new way to give back'
One thing Kirsten has been left with is profound gratitude towards the caregivers who are treating her son and those who have supported the family. "It's been an amazing experience watching our town, our friends and our families rally around us through this experience," she said.

This year, the Schiffs found an innovative way to give back. They and another family -- the Crones, with whom they became friends while baby Claire Crone was also having heart surgery at Hope -- put a new twist on their children's first birthday celebrations and raised over $5,300 for the hospital. Instead of toys, they asked loved ones to make charitable gifts to Hope Children's Hospital. "Dr. Ilbawi is saving lives everyday," said Kirsten. "It was a pleasure for our family and friends to contribute to the vision of the man who gave us an incredible first year with our son." Claire's mom Laura Crone felt the same. "Many of our family and friends came to tears when we asked for donations instead of gifts at Claire's first birthday," she said. "They all know how important the hospital is to us and Claire, and they were happy to give."