One thing Ryan Hawkins (of Warren) can tell you for certain is that her first born daughter Gabrielle is a fighter. At just three months old and suffering from a variety of issues including breathing and eating
problems leading to weight loss, local doctors could not figure out what was wrong with Gabrielle. Ryan, who was not from the area, was finally told that she should take Gabrielle to DMC Children’s Hospital of Michigan for an evaluation.
After seeing a team of specialists at the Children’s Hospital of Michigan, doctors determined that Gabrielle had dilated cardiomyapathy, an enlarged heart. “I knew something was wrong but after seeing many doctors, it was the Children’s Hospital of Michigan who actually diagnosed her condition. Doctors said it was a good thing that she was seen here because she may have not survived her condition for very long if appropriate treatment was not immediately started,” says Ryan.
Gabrielle was put on a number of medications and was in and out of the hospital for four years. She endured a number of serious conditions in addition to her heart condition including infection and removal of her gall bladder.
Despite this little girl coping with such heart wrenching conditions throughout her young life, Ryan said she won the hearts of the staff. Doctors would read her books and she enjoyed painting the nails of the staff while she had to be in the hospital. Ryan recalls how she would negotiate with one of the technicians a deal every time she needed an X-ray. “Even when she was really sick, her personality would come out and she would ask the technician for a little treat before she would have her X-ray.”
Gabrielle’s condition deteriorated pretty quickly when she was five years old and after being in the hospital for months, doctors determined that while waiting for a heart transplant she needed to be put on a heart machine called ECMO, which is similar to a heart-lung bypass used during open-heart surgery. The ECMO machine removes blood from the patient and pumps the blood through an artificial lung that takes over some of the work of the patient's heart and lungs.
“Even though she was supposed to be asleep and unconscious, I would still hear her say Mommy once in a while and she would squeeze my hand and twitch her toes,” says Ryan. Suddenly she wasn’t squeezing her mother’s hand or moving which lead Ryan to believe something more serious was occurring. Doctors determined she had developed a blood clot that travelled to her brain resulting in a stroke, a condition that is not uncommon for patients undergoing ECMO.
Patients normally cannot survive more than two weeks on ECMO so buying time is of the essence for many patients like Gabrielle until a heart becomes available.
A recently approved device approved by the Food and Drug Administration (FDA) called the Berlin Heart, a ventricular assist specifically for pediatric patients, has provided a lifeline for patients like Gabrielle which makes it possible to survive while a heart becomes available.
Henry Walters III, MD, chief of cardiovascular surgery at the Children’s Hospital of Michigan, recently testified to the FDA before the device was approved on the hospital’s experience with the procedure.
The device was used on 14 patients at the hospital under the FDA’s compassionate use regulations. According to Dr. Walters, 10 of the 14 patients survived to cardiac transplantation and nine of the patients are alive and thriving today — a result directly attributable to the efficacy of the Berlin Heart.
"Our experience with the Berlin Heart has been unequivocally favorable," Dr. Walters testified. "As our experience has grown, we have become confident with the techniques of insertion because the components are sized to accommodate pediatric patients, they are well designed and they yield a consistent surgical result. With each new insertion we now have a reasonable expectation of a successful surgical outcome, even in the sickest patients."
For Gabrielle, the Berlin Heart bought her much needed time. After about three weeks on the device, the staff informed Ryan that a heart was available. “Despite everything Gabrielle was going through she has always been a fighter. The night before the heart became available, I was afraid I was losing her quick. She was not responding, not fighting and not interacting with staff like she normally would.”
After a lengthy and complex heart transplant procedure, fast forward about one year and after months of therapy, Gabrielle is doing exceptionally well. Her mom says just recently she is making a remarkable recovery. She is now walking, running, talking and she is slowly but surely regaining movement on the right side of her body that was paralyzed from the stroke.
Ryan says the staff at the Children’s Hospital of Michigan has become like a second family to her and she is so appreciative of all the exceptional care and advanced technology like the Berlin Heart. “When Gabrielle had the Berlin Heart, it was not approved by the FDA but Dr. Walters explained the procedure very thoroughly and said Gabrielle would probably not survive without it. That device allowed my daughter to survive until a heart became available. Fortunately a heart did become available and my special daughter is still with us today doing remarkable well.”
For further information on the cardiac surgery program at DMC Children’s Hospital of Michigan, call (313) 745-KIDS or toll-free at (888) 362-2500.