Team Heart's Mission to Rwanda

The first week in April is Genocide Remembrance in Rwanda. It is a time for reflection and a time to grieve as a country. In 2008 we were invited by the Rwanda Minister of Health to bring a cardiac surgical team to perform life-saving cardiac surgery young adults suffering from end- stage rheumatic heart disease. We began on April 6, and as the country grieved, Team Heart provided a new beginning to 11 patients. From the first year we selected patients illustrating critical medical need, and selected those making certain there was no bias of ethnicity, gender, religious or political party affiliation.

Now those 11 individuals, remarkable in their own right, have illustrated an ability and desire to return to a normal life and give back.

We know all are alive, but we have lost touch this past year only with Juma, the youngest who lived with relatives so he could have surgery. There were two patients from a refugee camp, only Joseph remains in a refugee camp in the eastern part of the country. The other, Jean Claude has broken the cycle of refugee living and supports himself by driving a moto taxi. He seems so competent and efficient and attentive to his job. Team Heart recalls so well the cycle of poverty we witnessed and we are delighted to see self-determination to break the cycle.

Jean Damascene is at University in India in a combined Masters program in computer sciences. He recently wrote to us on the fifth anniversary of his surgery , April 9, to thank us for this chance and mentioned the despair he felt before surgery was an option, and how happy he is now to be a part of the future. Jean Hariyarimana is now a barber and helps to support his younger sisters. Lovely Alice is taking care of her children, her farm and becomes more beautiful and strong each year. Many of the patients look to her for guidance. Celestine, our very first patient, now promoted, finished university and gives back on weekend as the treasurer for the cardiac surgical network. Samuson led the patient reunion in a wonderful song to celebrate Team Heart in February this year. Vedaste, is living in Kigali, operating a shop. Damien, works as a farmer in the agricultural region. Jean Paul is the backbone of Team Heart, works hard at his career and is an entrepreneur and always has time to do what is needed.

It is easy to see the effects of the genocide when you look at each patient individually. Educations interrupted. Health care decimated for 15 years. Relatives killed, leaving patients without their support systems of family and close friends. Many of our patients were orphans in their late teens and have had to rebuild a community around them. It is truly remarkable to observe the resilience of the human spirit. This is a group of remarkable people, as are all Rwandese survivors of the genocide. These patients have also had to contend with a major life illness. They have had to come through major surgery, and must monitor their illness and focus on a healthy life-style for the rest of their lives. This adds yet another significant challenge as they try to move on with their lives.

It is particularly wonderful for the world to see the incredible results cardiac surgery can bring. And thank you to this group of patients for working so hard toward recovery and being determined to be part of the solution for the future.

I would like to thank each of you for participating in the most incredible trip to Rwanda. This was the trip that could be most pivotal to change the direction of how we provide care in many ways. 16 wonderful lives saved!! Looking forward, we have incredible partners, in Boston at the Brigham, and Spokane Healing Hearts, In Australia with Operation Open Heart and in Brussels, Chain of Hope. All expatriate Teams work closely with King Faisal Hospital and the Ministry of Health to raise the awareness for rheumatic heart and congenital heart disease and the need for an in-country program to address the burden of disease. It is remarkable the amount of dedication from 4 such distant locations, all wishing to help Rwanda look at this aspect of care so needed.

I cannot begin to separate out any one person for the participation, it was such a team accomplishment, and we were so dependent on each of you—and everyone did MORE than I could ever imagine. I hope as life settles down, you will take advantage of the opportunity to reflect, talk about our project, and, if you have thoughts to improve or strengthen or raise money, please let us know.

Looking at the larger picture for future care. …there are questions to be addressed as Rwanda wishes for a full time program. Where do we and the other teams fit in in the grand scheme of things? How can we best continue to support with visits and mentorship and move the agenda forward.  These will be questions needing to be addressed in the next few months….Can we help Rwanda make the choices to build a program thoughtfully and progressively. The teams involved are among the top...top in Brussels in Peds., top in Australia and top in US--all in Cardiac Surgery.. Rwanda can have no better support and guidance as they move forward.

Several people seem interested in the global cardiac surgery meeting in Geneva June 27-30, where representatives of the four surgical partners, Team Heart, Operation Open Heart-Australia, Healing Hearts of Northeast and Belgium Chain of Hope, will meet with the cardiologists from Rwanda and key leaders at the Ministry of Health and King Faisal Hospital Rwanda to discuss the future of cardiac surgery in Rwanda. … http://gfhm.ch/

To each of you....
Fondly and gratefully,
Ceeya

Let me just add my sincere thanks to everyone on the team, and to everyone back home who supported us in our efforts. I think, in many ways, this was our most satisfying experience so far. Maybe we are figuring this stuff out. In any event, the team was incredible this year. Everyone jumped in and did absolutely whatever was needed, day or night, no questions asked, and they did it with a spirit of love and generosity that is truly remarkable to behold. We live in such a cynical world that it is very inspiring to me to see the true character of people when they are placed in a position of responsibility in the form of caring for people who have so little and ask so little, and yet who need so much. What a privilege for each of us to be able to do our part, and to see it reflected in the simple smiles of thanks from the patients and their families. Life can have no greater reward. Like Ceeya, I cannot begin to single out individuals for special thanks. You are each and every one so special to us and to the patients we were privileged to serve. Thank you.

With profound gratitude,
Chip

“If not this, what? If not here, where? If not now, when? If not us, who?” February 10, 2013

The film, Open Heart, up for an Oscar is also about Rwanda....and children suffering from rheumatic heart disease.

Thank you Keif and Cori for bringing this wonderful story to the international community. Many of you know, since 2008 Team Heart, Inc., (501 c 3 27-1435443) is one of four teams, (In order of appearance, Operation Open Heart Australia, Team Heart, Chain of Hope, Belgium and Healing Hearts of Northwest, Spokane WA) operating on children and young adults with rheumatic heart disease IN Rwanda.  Our Team just completed their sixth trip providing surgical intervention on 16 individuals who had no other chance of survival. Patients are doing well but the work earnestly continues to coordinate post-operative care in a resource poor setting.

Team Heart alone has provided care to nearly 100 individuals bewteen ages 14-44 years and at this time, currently supplies Coumadin for all those who receive mechanical valves—including the children operated in Sudan or India. Although there are four Rwanda cardiologists for a country of ten million people to provide the follow-up care for our patients, one of the biggest challenges has been a consistent supply of Coumadin not readily available in country and the increased need to see patients in follow-up and evaluate post-operatively how they are doing.

Team Heart provides not only life saving surgical care; we are actively led a screening of 3000 school-aged children to detect early disease for intervention, to prevent further progression of heart disease. In collaboration with the Rwanda Heart Foundation, an Awareness and Prevention program was developed. We initiated a c collaborative with the schools of nursing to change the curriculum to include an emphasis on heart health including rheumatic heart disease. In 2009 we identified a young surgeon and assisted in finding a training program, now he is currently nearly halfway through a five year program. In regards to education, we have developed a curriculum for internal medicine physicians to increase their knowledge base for cardiology to better provide care and diagnose of cardiac disease. We support a patient network of over 160 patients in the country who need follow up information and support to maintain good health. Returning to school and work is an important part of the effort to return to normal life.

From the beginning Team Heart’s goal was to help build a sustainable comprehensive program in cardiac surgery in Rwanda to address this significant burden of disease. Rwanda is a landlocked country that borders include over 10, million people, 80% are within the poverty range. Burundi and Congo and eastern Tanzania have no cardiac program, so the potential population of people to be served is well over 40 million.

Challenges in all programs like this are immense. In order for progress to be made in one area means a power shift from another. Competing for the same funds in the global world is difficult in a world where surgery is deemed too expensive, unless of course it might be your child who needs the surgery.

Rheumatic heart disease (RHD) is a disease of poverty and children. Neither category has a voice in decisions about care in most settings around the world. RHD is caused by, repeated bouts of untreated strep throat where inflammation destroys the heart valves or kidneys over a period of years. Eradicated in the US and most of the western world it is a disease process that is silent over time until congestive heart failure is recognized. Unfortunately, at this advanced stage, only surgery is the answer to return the patient to good health; ONLY IF follow up and medication is available and provided.

Let this movie be a CRY OUT to encourage those in health care to make the changes necessary and to put jealously aside to provide the care needed. Demand that sustainable cardiac surgery be possible to those who need it while forging forcibly ahead with an educational, prevention and early intervention. Sudan is one wonderful place where care can be provided, but it is not enough for the anticpated 15,000 individuals in Rwanda who need our help. Top surgeons and committed efforts from the US, Australia and Eurpope are helping Rwanda to develop a program now. Top leaders in Rwanda recognize the need and have pledged their help. Help us to help Rwanda achieve the program needed.