A baby is born near New York City. He has a condition called pulmonary atresia with aortopulmonary collaterals, one of the most complex of all congenital heart defects. His pulmonary arteries never formed during fetal life, and his ability to take oxygen into his blood is highly compromised.
In some ways the baby is lucky. He happens to have been born close to a well-respected children’s hospital. Despite the hospital’s accomplished pediatric heart program, the doctors there tell the baby’s parents that his condition is so complex that they have no effective treatment for him.
The parents are given two options. One is to bring their baby home, provide comfort and love, and prepare for the reality that he has a 50 percent chance of making it to his first birthday. And if he survives, he faces a very poor quality of life and almost certain death by age 10. The other option is to take their baby to another hospital that is known for performing some of the most complex heart surgeries in the world.
That hospital is not in New York, Chicago, or Boston. The baby’s doctors recommend traveling across the country to Lucile Packard Children’s Hospital Stanford, where our Children’s Heart Center team has developed a management program for this problem that involves highly specialized diagnostic and imaging techniques, complex innovative surgical correction, and outstanding multidisciplinary care.
With generous support from the philanthropic community and the leadership of renowned pediatric heart specialists including surgeons, cardiologists, anesthesiologists, intensivists, radiologists, and nurses, our program has evolved over the past 15 years, and babies with severe heart conditions who undergo treatment at our hospital now have a survival rate of 98 percent after surgery, and long-term survival into adulthood of over 90 percent.
Around the world, thousands of babies are born with heart defects each year. At the Children’s Heart Center, we provide cutting-edge care not only for patients like this baby, but also for those with a range of needs including heart failure and transplantation, single ventricle heart disease, fetal and premature infant heart disease, and adult congenital heart disease.
The families who find their way to our hospital do so in one of several ways. Their babies may be born in our region and are primarily evaluated at our hospital, or they may be born at another top children’s hospital where the level of knowledge is such that they are aware of our unique capabilities. Or increasingly, parents who are told that there is no hope for their child take matters into their own hands and reach us through social networks and their own research.
In spite of the breakthrough treatments delivered by our team, there remain many challenges. Management of these very complex patients is labor intensive. Despite the outcomes we have achieved, we must continue to invest in our personnel and in our center’s infrastructure. We must continue to fine-tune our existing protocols in order to save more lives, improve further on our already outstanding outcomes, and advance the entire field for the benefit of children with heart disease nationwide. Our goal should be 100 percent survival.
Our success and status as a renowned pediatric cardiology program is the result of decades of donors and partners who believe in us and our patients. With your continued support, we look forward to meeting the challenges—continuing to push the boundaries of what is possible, and allowing all children with heart disease to win.
This article first appeared in the Fall 2015 issue of Lucile Packard Children's News.
