By Ceeya Patton-Bolman, MSN | Director, Team Heart
In 2012, Regine, an orphan came to the attention of Team Heart screening team. Shy, with a sweet and trusting smile and speaking almost no English, she could not lie flat to be examined by echocardiogram due to severe heart failure. Gasping for breath, she appeared to be in an acute phase of heart failure. Through interpreters she stressed she wanted to live, BUT she wanted someday to marry and have a chiild. Team Heart is committed to addressingand respecting Rwandan cultural norms and is well aware of the powerful value that marriage and bearing children places on women of childbearing years even those with chronic illness. For many it could lead to being ostracized from family, and being unable to support themselves. The future is sometimes bleak for this group of young women with rheumatic heart disease.
Regine accepted a bio-prosthetic valve buying her time to create this family of her hopes and dreams. Central to the plan was a group of friends surrounding her, including a young man Vincent who unlike some men in the same situation also due to cultural pressure, would never leave her side. It was an incredible love story based in poverty but devotion. He brought her juice to sip as she recovered from surgery, helped carry her belongings to preserve her strength and was her personal advocate. She did well with surgery and Regine and Vincent saved their money even though both were unemployed and lacking advanced education had to create day work to survive. A spectacular wedding followed, created by their friends. A baby son soon arrived, the light of their lives!
But Bio-prosthetic valves in Rwanda do not last more than 6 or so years and in February as she underwent her annual evaluation it was clear, she did not have long to live with out surgery number 2. Because of the annual Team Heart travel, we had been asked not to do re-do's....to give more patients a chance--if redo ties up the blood bank of the ICU beds, surgery must pause. The blood bank situtation was improving greatly, in Rwanda since we began, but still demand for potential bleeding at re-do was certainly frightening to the surgical team. She was evaluted to send out of country for surgery to India and althought the Ministry of Health can only select few for this opportunity, she was amazingly governmental sponsored. Many thanks to the local Team Heart staff who stood by her and pushed for advocacy, making all arrangements for passport and travel and preparing her for what they anticipate would happen during travel and surgery. The patient Association, RCPN, TH founded in 2009 with patients, met to lend support and local fundraising.
Living on $50 a month the young family leave nothing left to contribute. The money donated through Global Giving has contributed to making it possible for airfare and hotel costs. On October 16, Regine and Vincent stepped on an airplane headed to India for her redo surgery! Thanks to all the donors who contributed the $5000 needed to send her possible. Now we wait to see when she will recover enough from the ardurous flight to go the OR for a new valve...
Regine is just one patient story of the many in Rwanda needing cardiac surgery as a result of too late diagnosed and untreated rheumatic heart disease. It is estimated there are upwards of 35,000 who are yet undiagnosed who will meet the same heart failure fate. A cardiac center in country will provide a place for diagnosis by local experts, expert surgical care, and education to address the growing cardiac care needs of the country.
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