This publication on Global Burden of Congenital Heart Disease will help change the conversation about the impact of CHD globally – highlighting the substantial loss of life to CHD in infancy around the globe. The 400+ page appendix provides data on fatal and non-fatal outcomes for every country broken down by age group. The Global Burden of Disease study is in interative process; this paper will allow for yearly updates of this data and all are welcome to sign up to be GBD collaborators to help inform this process. Dr. Sable was one of the senior authors on this important publication.
Heart Healers helped to place over 100 Ugandan children with congenital heart disease for successful heart surgery in India, the United States and Grand Cayman in the last three years with additional support from Samaritan’s Purse Children’s Heart Project and Gift of Life International. Dr. Sable personally evaluated all of these children along with over 100 others during visits in March and August this year.
Over 200 children have received open-heart surgery in Uganda in the last five years; survival is comparable to US programs, over 95%, but many more need to be treated. Heart Healers has played a major role in advancing diagnostic and therapeutic capabilities – doing the first open heart surgical procedure in 2007 and cardiac catheterization in 2012, side by side with the Ugandan team. Dr. Sable has also performed and interpreted echocardiograms on over 100 children each year since 2003, using telemedicine to share these images with physicians around the globe to facilitate acceptance of more complex patients abroad and improving surgical planning in Uganda.
Congenital heart disease remains the most common birth defect globally, impacting 1% of all children with 1/3 requiring corrective surgery or catheterization to survive into adulthood. Nearly 9 out of 10 children with congenital heart disease are born in countries without access to surgery; we have changed that in Uganda; helping to build a sustainable program there. And we still partner with institutions around the world to care for Ugandan children that are still too complex to be treated locally. The faces and stories of a few of the children who have recently undergone surgery in India as a result of Heart Healers presence in Uganda is even more compelling.
Mariam (left) is a 2-year-old girl with a large hole in her heart and also had a very large abdominal hernia. She was referred to us by our team in Mubende, Western Uganda and evaluated during one of our research trips for our pregnancy project. She was able to get both conditions fixed at the same time.
Faith (center) is a 4-month-old diagnosed by our team in Gulu with truncus arteriosus, a complex heart condition that is more common in Uganda than in other countries. This condition is fatal if not fixed in the first 6 months of life. Faith underwent successful surgery and has doubled her weight and is thriving. She is shown back home in Uganda.
Benson (right) is a 5-year-old boy from Kampala with a large hole in his heart and high pressure in his lungs. We have been following him since he was a baby and his surgery was felt to be very high risk. Benson was running out of time to be an acceptable surgery candidate. Fortunately, he had an excellent outcome and now has a new lease on life.
Developing a strong rheumatic heart disease (RHD) research infrastructure in Uganda has also resulted in substantial increases in clinical cardiology capacity around the country. A national RHD registry has been created and clinical RHD centers of excellence have been established in three remote referral hospitals. This provided specialized cardiac care for the first time outside the capital. Our collaborative program in Gulu (in Northern Uganda) that grew out of screening research studies has allowed hundreds of patients to receive cardiac care without traveling great distances.
Tertiary services are growing as well, and we have successfully conducted over a dozen training and teaching missions to build a sustainable surgical and cardiac catheterization program, so that children with heart conditions can be cared for at home. Our clinical collaboration has helped foster growth and sustainability at the Uganda Heart Institute. The Ugandan team has performed 13 rheumatic valve surgeries and 40 catheter balloon procedures for rheumatic valve blockage in 2017. The balloon procedure is guided by x-ray and ultrasound as shown here.
Even though Dr. Craig Sable has been working at the Uganda Heart Institute for 15 years, the Heart Healers team had even bigger goals for our February 2017 visit than ever before.
On February 20, we had completed (or at least thought we were done) our first RHD cardiac catheterization mission in Uganda. 10 children and young adults with severe valve blockage had been successfully treated via cardiac catheterization (with a balloon valve dilation procedure, see Figure 2) – all being given a new lease on life without heart surgery. Ugandan cardiologist Emmy Okello had performed all these cases under the supervision of a two-person cardiology team from Brazil, Drs. Maria Nunes and Lucas Lodi. The great success of this mission represented several important new landmarks in our program: treatment of a life threatening disease by a procedure not previously available in Uganda, skill transfer of techniques to Dr. Okello to allow for additional patients to be treated locally, leveraging a “south-south” partnership between our mutual partners in Uganda and Brazil, and the intersection of research and clinical care – several of the patients had been found to have RHD as part of important research projects.
As the final scheduled catheterization was completed, 17-year-old Daniel (shown here) arrived at the Uganda Heart Institute in severe distress. He had come by bus from several hours away and did not have the energy to stand up, he could barely breathe. He underwent an echocardiogram that showed the most severe mitral valve blockage we had ever seen. None of us expected him to survive more than a few hours, but we had to do something. We took him to the cardiac catheterization laboratory and emergently tried to open his valve with a catheter balloon, but the blockage was too severe. His only hope was to go immediately to the operating room for valve replacement. In what was a heroic life saving operation, Ugandan surgeons Tom Mwambu and William Manyilirah replaced one of his valves and fixed another one. Daniel’s first night was very tenuous but 10 days later he walked out of the Uganda Heart Institute and is now active and feeling better than he has felt in years. He will need to be on blood thinning medication for the rest of his life, but our clinical and research collaboration in Uganda helps support making this possible in the Ugandan capital as well as in towns in Northern and Western Uganda.
So, there’s this guy. He is a two time MLB All-Star. He was named the Baltimore Orioles’ Player of the Year in 2005, set a franchise record with 51 doubles in 2008 and, in 2009, was named “Most Valuable Oriole.” Think this guy has a congenital heart defect? Well he does.
Amy Scheel works with us in Gulu, Uganda and when she came across a little boy named Opio, her heart broke for his broken heart. She made it her personal project to help his family raise the funds needed for his surgery and post-operative care.
This week the Heart Healers team is in Uganda for another medical mission. This time we’re partnering up with Imaging the World, working on bringing cardiac care to the rural Health Centre in Nawanyago.
Several advocates for the care of children with heart defects from around the globe joined together in Geneva, Switzerland last month at the 11th Global Forum on Humanitarian Medicine in Cardiology and Cardiac Surgery, including Heart Healers own Dr. Craig Sable. Today, we’re sharing with you some highlights that Dr. Sable took from the Forum Meeting so you can better understand the desperation that makes our mission necessary and what kind of impact Heart Healers makes on the cardiac community.