Uganda Heart Mission in the Midst of World Crisis

2019 TSF Award Recipient
Pranava Sinha, MD
Children’s National Health System
“Management of Rheumatic Heart Disease in Uganda”
TSF Every Heartbeat Matters Award

Surgical Trip Narrative Provided by: Craig Sable, MD

Our entire world has been turned upside down over the past month as we struggle to cope with and combat the impact of Coronavirus 2019 (COVID-19). Medical personnel are faced with significant responsibility to treat COVID-19 patients, educate the public, work in environments that are continually changing, and keep themselves healthy – all while continuing to care for new and existing health problems that impact their patients. We are excited to share an inspirational story about a medical team from the United States and Uganda who bonded together during this uncertain time to treat patients with heart disease and to continue building a sustainable heart surgery program in Uganda.

Rheumatic heart disease (RHD) impacts over 39 million people globally and causes nearly 300,000 deaths per year. RHD is the result of frequent untreated streptococcal throat infections in childhood that ultimately cause the body’s immune system to repeatedly damage heart valves. It is completely preventable, yet the majority of the world’s children still live in impoverished and overcrowded conditions that predispose to RHD, and most patients present with advanced valvular heart disease; having missed opportunities for preventions. For example, in Uganda, a RHD registry includes over 600 children with clinical RHD, of which nearly 40% die within 4 years and the median survival time from enrollment in the registry is only 9 months! For these patients, heart surgery is the only viable solution for long term survival and normal quality of life.

Doctors, nurses, researchers and other medical staff at Children’s National Hospital in Washington, D.C. are leading efforts to change the global picture of RHD through a near 20-year collaboration with the Uganda Heart Institute (UHI) in Kampala, Uganda, to build a sustainable heart surgery program in Uganda for the treatment of advanced RHD. In parallel, a research partnership led by Drs. Craig Sable (Children’s National Hospital), Andrea Beaton (Cincinnati Children’s Hospital Medical Center) and Emmy Okello (UHI), is enabling groundbreaking research focused on the prevention of RHD that could help to eradicate RHD in our lifetime.

With support from TSF and the Edwards Lifesciences Foundation, The Emirates Airline Foundation, Gift of Life International, and the Samaritan’s Purse Children’s Heart Project, Dr. Craig Sable and pediatric cardiovascular surgeon Dr. Pranava Sinha planned the 16th cardiovascular surgical mission trip to Uganda. The trip would be a continuation of the partnership to advance the state of heart surgery in Uganda and would focus primarily on children with heart valve disease. Eight cases (6 with RHD) were scheduled during the week of March 16th, 2020, including 7 children (18 months to 18 years of age) and one adult. UHI has been performing 1 – 2 heart valve surgeries every two weeks over the last few years; this trip would allow for additional skill transfer, treatment of more complex patients, and further the goal of increasing surgical capacity in Uganda. Over the last 15 years, more than 1,000 children have received lifesaving heart surgery in Uganda. The ultimate goal is to have at least 1,000 annual operations (both pediatric and adult) to serve the needs of the population.

Dr. Sable and four cardiac intensive care unit nurses (Leah Arold, Erin Shand, and Nancy Francis from Children’s National and Cabrina Cacciopo from Stanford) arrived in Uganda on Sunday, March 8th, 2020. The team met with UHI staff on Monday, March 9th to deliver critical supplies, review clinical data for scheduled patients, develop plans for transport, housing, and meals for patients coming from distant locations, and to finalize staffing plans for the surgical mission the following week. The rest of the Children’s National team, including heart surgeon Dr. Sinha, anesthesiologist Dr. Nina Deutsch, operating room nurse Alisa Bruce, perfusionist Gerald Mikesell, and biomedical engineer Ozzie Rivera were set to arrive later in the week.

Over the next 72 hours the world changed dramatically. COVID-19 cases in the US soared from a few hundred to several thousand. Uganda (which only had no confirmed cases at the time) closed its borders to United States citizens, making it impossible for the rest of the team to travel to Uganda, and a travel ban implemented by the United States threatened to make it difficult for the five team members already in Uganda to return home. The team in Uganda faced a difficult challenge. Staying for a second week could jeopardize the team’s return to the US and compromise the team’s ability to work after their return; however, patients and families who had been waiting for heart surgery for months or years, knowing this might be their only chance, were counting on the surgery mission to go forward.

After careful consultation with the UHI team including cardiovascular surgeon Dr. Tom Mwambu, cardiologists Drs. Emmy Okello and Peter Lwabi, and cardiac intensivist and anesthesiologist Dr. Lameck Ssemogerere, Dr. Sable decided that the operations for the sickest patients must continue as planned – but with the local team providing all of the care. Dr. Sable and his Ugandan colleagues knew the local team was ready to step up and take on this volume and complexity of patients. The three youngest and most complex patients were stable and would be rescheduled for later in the year, when Drs. Sable and Sinha would return to UHI.

What ensued over the week of March 16 – 19, was not only life-saving for five Ugandans with end stage heart disease, but was also an inflection point for expanded cardiac surgical services at UHI which will help thousands of other patients in the future. This included day-long cases on Monday, Tuesday, and Thursday, and two complex surgeries, starting at 6:30 a.m. and ending at midnight on Wednesday, March 18th. The U.S. team received live updates with the amazing progress during the week. The five patients shown below had successful open-heart surgery and are all doing well, either on their way to recovery or already discharged to their communities, where they will, for the first time in memory, be able to play, exercise and go to school or work.

Gorreti: 12-year-old from Kampala, had mitral valve replacement and tricuspid valve repair. Gorreti could barely walk 20 feet prior to surgery, now we anticipate she will be able to return to school and normal activity. She made us a card that says “thank you for this gift” in Lugandan, her local Ugandan language.

The accomplishments by the local UHI team would not have been possible without the support of our incredible donors. This grant funded by TSF and the Edwards Lifeciences Foundation provided financial support for the purchase of valves and other equipment that saved the lives of these five patients, and will be used to save additional lives over the coming weeks. The Emirates Airline Foundation not only provided air travel for the U.S. medical team, but responded instantly to adjust travel in the time of crisis. The Samaritan’s Purse Children’s Heart Project provided meals, housing, transport, and support to patients and families, as well as meals for the UHI staff. Gift of Life International provided seamless access to purchase supplies and medications that not only saved thousands of dollars, but provided a sustainable supply chain essential to the long-term success of our work. The patients, doctors and nurses below would like to share a huge Webale – THANK YOU to all of our supporters!

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