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!
