Dear parent of a child born with a coronary artery fistula,
When our second child, Mollie, was 2 days old, we were waiting for her pediatrician's visit to the hospital to release her to go home. To our surprise, instead of sending her home, he wanted to order some tests on her heart and have them couriered from our local hospital in Frederick, Maryland, to Children's National Medical Center in Washington, DC. Later that day, Mollie was flown by helicopter to Children's National and we followed by car very anxious to learn what was wrong with our precious baby. When we arrived at Children's National, Craig Sable, MD, took us in a room and proceeded to explain to us the severity of Mollie's problem. He carefully drew a picture of a normal heart and then a picture of Mollie's heart. Surgery was scheduled for 9:00 the next morning.
Unfortunately, Mollie's problem deteriorated quickly during the night and her major organs began to shut down. After stabilizing Mollie during the night and determining that she was still able to have the surgery, the surgery to correct her coronary artery fistula was performed later the next morning. The repair itself only took seven minutes. Mollie had some difficulties during recovery. She did not handle the anesthesia well and had problems waking up from surgery. They tried three times unsuccessfully to take her off of the ventilator before she was finally able to wake up enough to breathe on her own. Mollie was in the hospital for 21 days.
Mollie had excellent care while she was at Children's National Medical Center. The nurses in the neonatal and pediatric intensive care units (ICUs) were amazing. Several doctors also were involved with her case. In fact, it turns out that coronary artery fistulas are so rare, that her group of doctors had never seen it before. They even wrote a journal article about her case because until Mollie, there was no record of this problem manifesting itself the way it did with her. I never had one question that went unanswered, even after her stay there. When I had questions, they were always answered and always treated with the utmost importance.
It is hard to believe that Mollie will be 12 years old in July of this year (2010). We live in Tennessee now, but we make a trip up to Washington, DC, every year to see Gerard Martin, MD, so he can check on Mollie and her coronary artery which was not only defective at birth but was also 15 times the size of a normal newborn. Mollie is a healthy, active, running, basketball-playing, piano-playing, singing, academically-advanced 11-year-old. We are very thankful for Children's National Medical Center and the important role that it has played in our family for all these years.
To close, one PICU nurse said to me one day all those years ago, that "in six months this will all just be a memory." She was right, I look back on those very challenging 21 days and realize that with the help of wonderful nurses just like her that it is possible to get through your time at Children's National. I trust that your experience goes very much as mine did. I wish you the best.
Mollie's mom, Robin