We hesitate to open Facebook today. The tributes yesterday to Shabani, a young man who died suddenly 11.19. 2014 several years after an aortic valve replacement for rheumatic heart disease, broke our hearts, reminding us of how connected this smiling, happy young man was with his family and friends. The messages from US team members and the photographs of a very handsome smiling young man surrounded by his nurses convey his reach across the world. Even so, I am sure his Kigali friends and family feel the grief more passionately than we possibly could. He was part of your daily life and you were fortunate for it. And Shabani always talked about his family and his friends.
I know TeamHeart followers who do not know us well (and some who do), are confused about why a cardiac surgery team becomes so sad at the death of a patient we knew for some short weeks. After all, cardiac surgery teams see life and death daily. But many patients capture our hearts, we stay in touch over time and Shabani was certainly one. His cheerful smile and happiness at being alive was infectious. We choose team members who not only are experts at what they do, but are compassionate and caring individuals-- one of our main selection criteria, but really--everyone simply loved Shabani.
Shabani had surgery by a team ranked in the top ten in the US—among the best of the best. And we travel to Rwanda for two reasons. First, because there is no permanent in-country cardiac surgery in Rwanda providing care for those who need it. Second, because people of low-income seldom have a chance to leave the country for life-saving surgery---and certainly, few over 15 years are identified if they are low income. TeamHeart, one of the four teams in a collaborative effort, has developed a system- shipping 2000 lbs. of supplies, booking some 30 health care providers, set up OR theaters with highest quality of supplies. We do this in collaboration with the Ministry of Health. The Team is not paid, we pay our own airfare, we donate supplies and vacation time required to travel. The Ministry pays part of the accommodations and the patients hospitalization is covered by Mutuelle de Santé. For those who cannot pay the 10% co-pay for surgery, it is covered by the Rwanda Ministry of Health. So this is joint project with the goal of a regional in-country cardiac surgical program to provide essential care to all who need it.
Shabani did well with surgery and was actually discharged looking pretty good! But we knew when we saw Shabani’s echo after his re-admission several weeks after he went home, his heart was not working as well as immediately following surgery. He had good care with the local team and his family made certain he had the 10% co-pay to be seen. He was able to buy medications, most of our patients truly cannot.
If there is one thing we can honor Shabani with, we can have as an “action plan”; it is the determination to improve and increase cardiac surgical services so there is not a several year delay in surgery when it is critically needed. If Shabani’s ventricle had not been so damaged by the inefficiency of his aortic valve damaged by disease, he would potentially have had 35-40 years to share that smile with all of us.
Each year we are presented with around 70-80 patients to consider accepting from a waiting list that is said to near 2000—and this is after the local cardiology team serving the public sector have gone though their list and selected the candidates who are sick but thought to be able to survive the surgery and return to normal life. Over half of the patients, if not more, should have had surgery before they present to us, by several years. But as you know, access to the only two cardiologist in the public sector Rwanda is difficult, the waiting list is long for they are very busy. And most young patients do not consider heart disease as a problem they might have. Unless RHD detected by a routine physical examination early, by the time the patient shows symptoms such as shortness of breath and fatigue, the disease has been there for at least 3-5 years doing silent damage. There are children as young as 8 years affected but the average age is 14 -35, with average or usual age of 19 years.
Rheumatic Heart Disease (RHD) unfairly targets poorer impoverished countries. And for anyone living in the Rwanda or fleeing in 1994, that would be true. Larger families with some crowding in the home, poor nutrition during war or crisis, little access to medical care for lack of resources are often the key indicators for RHD. It begins with just a sore throat….and even today in Rwanda our patients will tell you; many feel they might be ridiculed by the health care system for showing up with a sore throat in the clinic to be seen. That must change. Simple penicillin treatment of a strep throat will prevent progression of disease. Even once RHD is identified, monthly injections of penicillin can prevent progression of disease in many many cases.
The only way to prevent new patients having the disease is a country-wide approach to fight rheumatic heart disease upfront; RHD prevention and awareness and early intervention. The Rwanda Heart Foundation is part of an ASAP program. ASAP Advocacy, Surveillance, Awareness and Prevention. It is a good program and should be implemented and embraced.
The patients are unknown to us at the beginning, but a great number of them will win our hearts. Shabani was one. He invited us into his life and shared his thoughts and opinions. He was a very bright young man, someone who Rwanda could/should be proud of. Our team rejoiced last week as he received his degree and diploma in accounting from University. He had plans to attend for Masters. His smiling face appeared on Facebook with his wonderful Mom and friends.
Our Boston based hearts weep with you. But rheumatic heart disease is a preventable disease. #Letusfixthis!