Q: I know progress has been made in reducing the rate of death due to heart disease in adults in the U.S. Is similar progress being made in quelling deaths due to heart disease in children?
A: You’re right that adult heart disease death rates in the U.S. are down almost 26 percent in the first 13 years of this century. But heart disease still causes more death in the U.S. than any other category of disease — over 600,000 deaths per year, most of them in adults. More effective treatment for heart failure, hypertension, high-blood lipids, as well as better diets, and, probably most important, a marked decrease in smoking have contributed to the improvement.
Diseases of the heart and circulation caused 458 deaths among U.S. newborns in 2013 — that’s in the first month of life. The Children’s Heart Association (CHA) estimates that more than 5,800 U.S. deaths annually occur due to congenital heart disease (congenital means “something you’re born with, as opposed to acquired heart disease, that may be due to infection, diabetes, high blood pressure, or tobacco). That number is also decreasing, though still about one percent of American newborns have a heart defect; as you can tell, most of those deaths occur later than 30 days of age.
My alma mater, Johns Hopkins University School of Medicine, was justly proud of having performed the first open heart operation on an infant. Pediatrician Helen Taussig, surgeon Alfred Blalock, and surgical technician Vivien Thomas collaborated on that first risky procedure in 1944; all three were still active at Hopkins when I got there in 1964. The first operation, called a Blalock-Taussig shunt, is done on children with a congenital heart problem called Tetralogy of Fallot, a relatively common cause of the “blue baby syndrome,” where not enough oxygen is carried from the heart to the tissues.
Blalock-Taussig shunts are rarely performed now, as better and more lasting procedures have been developed for Tetralogy and for most other congenital heart problems. Gradual improvements in the operative methods, and especially in the intensive support of infants surrounding the time of the operation, have contributed to far better outcomes for that one percent of children born with heart defects. In some cases, surgery is entirely effective in restoring a normal life expectancy; in others, the operation buys both quality and duration of life for an affected infant. That’s not to say that all sufferers from congenital heart disease reach adulthood. Sometimes, despite the best medical care, some infants and young children with heart disease die of their disease, some even despite having received a heart transplant. I spoke with Brittany Griffiths, whose son Liam died of severe congenital heart defects about one year ago, following high-risk emergency surgery for an unfortunate array of conditions abbreviated TGV, VSD, DoRV, and TAPVR. Griffiths and her husband, Brady, decided to do “what we could do to spread Liam’s name as a way of continuing his very brief life.” They joined a local group of parents of children with congenital heart disease, and took part last year in New Mexico’s first Congenital Heart Walk in Liam’s name. The organization, part of the Children’s Heart Foundation, exists to raise money for research into further improving care for children with CHD, and to support parents going through the ordeal that Brady and Brittany faced.
On September 17, the ACHA and CHA are sponsoring their second walk in Albuquerque to raise funds for research and treatment of congenital heart disease. Liam’s mom and her Team Liam will be there, walking in memory of her son.
You can find information about it at http://events.congenitalheartwalk.org/site/TR?fr_id=1653&pg=entry.