This Thanksgiving I added something new to the list of things I am grateful for. Three weeks ago, I traveled to a stunningly beautiful part of the United States, where I found hundreds of children living with debilitating heart disease.
Weeks to years later, they were found to have heart murmurs. Many were fatigued and struggled for breath simply walking across a room. The same streptococcal bacteria that created the inflamed throat or skin infections had also ravaged one or more of the delicate valves of the heart. The scarred and thickened valves had become stiff, leaky and dysfunctional, leading to heart failure in these children, who ranged in age from 6 to 17.
If you were alive in the 1930s, you are likely finding this eerily familiar and possibly realize that I am describing untreated strep infections leading to acute rheumatic fever and, subsequently, to rheumatic heart disease.
Before penicillin was developed and public health policies changed the living conditions of families across the United States, rheumatic heart disease was the most common cause of heart failure beginning in childhood and the leading cause of death from heart disease in young adults.
In the 1940s, the incidence of rheumatic heart disease in the United States all but disappeared. Everywhere, that is, except in this one part of our country that I and a team of OHSU Doernbecher Children’s Hospital volunteers visited in November.
Recognizing its strategic importance, the United States government signed a treaty with the people of the South Pacific islands of Samoa in 1900 to create the U.S. Territory of American Samoa. While retaining much of their South Pacific culture, the people of this strikingly beautiful, remote tropical island are also proud U.S. nationals and intensely patriotic.
After learning of the disturbingly high numbers of children who are struggling with rheumatic heart disease in American Samao, our team traveled there.
The team included Jennifer Huang, M.D., fellow in pediatric cardiology; Rachel Sunstrom, P.A., instructor in cardiovascular surgery; Lynn Johnson, P.C.N.P.-A.C., acute care nurse practitioner; Timothy Taber, R.C.S. and Carrie Dishner, R.D.C.S., echocardiographers; Ashley Armsby, student; and myself.
Despite a talented and committed staff of local pediatricians, nurses, hospital administrators and health workers, the children of American Samoa are unable to be properly diagnosed and treated due to a lack of ultrasonographers, pediatric cardiologists and surgeons.
The staff at the Lyndon B Johnson Tropical Medical Center (LBJTMC) in Pago Pago, American Samoa, are doing their best to diagnose rheumatic heart disease using technology of the 1970s and have produced a remarkable system of tracking the hundreds of children they believe to have this disease – bringing the children back to clinic every three weeks for a dose of penicillin to protect them from contracting a second, even more potentially dangerous infection.
What they lack is access to pediatric cardiologists with whom they could accurately diagnose and medically treat the disease, and to pediatric cardiac surgeons to whom they could refer children who require repair or replacement of their affected heart valves.
In light of the extraordinary advances in technology and communication over the past several decades, the inaccessibility to medical specialists within parts of the United States is not only inconceivable, it is unacceptable. We are committed to change and our goals are simple:
- Establish the scope of the problem of rheumatic heart disease in American Samoa.
- Train local staff to record and send heart images to centers in the United States for diagnosis.
- Provide local physicians expert consultation and treatment recommendations for children with rhematic heart disease.
- Develop a coalition of pediatric cardiology programs in the Western United States to treat children requiring valve surgery.
- Develop educational programs and preventive measures that will decrease the incidence of untreated strep infections that lead to acute rheumatic fever.
- Develop a health care delivery system that will protect children who have been infected with Streptococcus from contracting a second, debilitating infection.
In short, our goals are to eliminate the striking disparity of heart-related medical services provided to children within this part of our nation.
Back to my Thanksgiving list … I am deeply grateful for the health of my children and for the ability to work at an institution that generously supports the sharing of expertise, research, technology and time to help those less fortunate within our community.
Thank you, Doernbecher!
Laurie Armsby, M.D.
Associate Professor of Pediatrics, Division of Pediatric Cardiovascular Medicine
Pediatric Interventional Cardiologist
OHSU Doernbecher Children’s Hospital
OHSU Pediatric and Adult Congenital Cardiac Catheterization Lab