2014 continues to be a meaningful year for the future of the Global Heart Network (GHN) with our unswerving focus on encouraging collaboration to increase access to heart care in low and middle-income countries. Become a member and help engage in the dialogue to increase access to heart care, sign on at Global Heart Network’s “Network of networks” consists of building a worldwide network of stakeholders working in cardiac care (Hospitals and Community Clinics, NGO, Governments and Policy Makers, Corporations and Foundations, and Patients and Family Members who all have a vested interest in ensuring that through working together we can achieve more.
How can GHN network of networks help the global community? You can post your needs and we can help find resources for our network members. You can also post resources, and share experiences or connect directly with us Current important goals for the network Registry of CVD institutions in LMICs – Over the last year we have conducted a research project that has resulted in building a template that will inform the GHN database of CVD Institutions in LMICs. The Registry is destined to encourage south south collaboration, and start building the first ever registry of CVD institutions in LMICs. Data including needs and resources and costs of surgery will be stored and shared for network members Mapping these CVD Institutions and NGO activities, as well as other existing networks and the policy spaces where they all come together GHN has currently open an Evaluation of Humanitarian Cardiovascular Initiatives in North America. This survey is open to all who work in Humanitarian activity in North America and has been put together to include all initiatives emanating from North America. The survey is open until the end of the year and we invite you to respond. The analysis of the several responses to date are highly encouraging. 85% of our respondents are currently working in humanitarian cardiac care in LMICs and the other 14% are interested in exploring opportunities. These responses have revealed many more connections for Global Heart Network and continue to make our platform stronger and more beneficial to the community as a whole. If you know of someone who would be interested in this survey please pass along the link above. For any questions or to schedule an appointment to fill out the survey with a member of our team please contact Misayo Welke. We will be mapping these CVD institutions and NGO activities, as well as other existing networks and the policy spaces where they all come together This month in our series of profiles, we discuss the situation in Nigeria as relayed to us by Dr Fidelia Bode-Thomas, Professor of pediatric Cardiology at the University of Jos and Consultant pediatrician to the Jos University Teaching Hospital and share with you a story sent to us from a patient in the Philippines.
This month we celebrate the return of Beatrice to her home in Nigeria, and Mark Lawrence to his home in the Philippines after successful open heart surgery. Both patients found resources through the GHN platform via their health care proponents in their home countries. To celebrate this we have asked Dr Fidelia Bode-Thomas, Professor of pediatric Cardiology at the University of Jos and Consultant pediatrician to the Jos University Teaching Hospital to talk with us about the situation in Nigeria, and her ideas for the future, and we have invited Mark Lawrence the patient to talk about his experience. Enjoy this week’s read.
Situation in Nigeria – CHD and RHD
- CHD is very common in Nigeria, as in other parts of the world but surgery for CHD is still very much in the rudimentary stage. A few centres (about 5) are now intermittently offering open heart surgery for older children and adults with simple defects. A few more are able to do closed heart procedures. However, the vast majority of patients still do not have access to OHS for several reasons. Generally, there are no facilities’ to cater for newborn infants and even under – fives so any child born with a severe and life threatening defect will die because there are no facilities and capabilities for immediate intervention. It is usually also not feasible to immediately evacuate them for treatment elsewhere because it takes time to make such arrangements and the funds are also usually not available. Even for older children the numbers requiring OHS far exceed the capacity of the few centres in the country that are just beginning to offer such services. So the vast majority still need to be sent outside the country for surgery. A few, very few are lucky to benefit from some charity programs, and for a few others their families are able to mobilize the resources to take them outside the country while the majority are simply resigned to their fate.
The same thing applies to RHD which usually affects older children and young adults. Unfortunately RHD which is the most preventable HD in the world is still very common especially in Northern Nigeria because it is a disease linked with poverty, poor living conditions and poor access to basic health care.
- My name is Fidelia Bode-Thomas.Ihadmyundergraduate medicaleducationatAhmadu Bello University,Zaria,Northern Nigeria and postgraduate residencytraininginPaediatricsat theUniversityofIlorin Teaching Hospital in Nigeria.I had my pediatric cardiology training at the Hannover Medical School, Federal Republic of Germany.Iamcurrently aProfessorofPaediatric CardiologyattheUniversityof Jos and Consultant Pediatrician to the Jos University Teaching Hospital. My dream is to see OHS firmly established in Nigeria so that our children can have ready access to it.Another istoseeRHD eradicated and to improve the quality of life of those currently affected.
- The biggest barriers to increasing access to cardiac care in Nigeria include the lack of political will due to many other competing health needs that are viewed as being “more urgent” and where more lives can be saved by investing fewer resources e.g malaria, Tb, HIV and other infectious diseases. The other is the capital intensive nature of cardiac care especially for children. Also it takes time and commitment to build up the necessary capacity in terms of training all the specialised manpower needs
- There are at least 4 cardiac program initiatives currently going on in Nigeria – these are in Lagos, Ibadan,EnuguandOsogbo. Most of them are in partnership with foreign based organisations or hospitals with the aim of helping them to build the needed capacity until such a time that these centres will be able to stand on their own. I know that a few other centres are also gearing up but have not quite yet managed to start doing OHS regularity. These would include centres in Abu ja,Zaria, Calabar, Benin etc. Most of these are already doing closed Heart procedures routinely.
- The goal of HAT is to help poor children with heart disease gain access to the required treatment that often includes surgery. Our biggest needs are for partnerships that would help us to achieve this goal, and the finances to be able to help more children.
- An online platform like GHN is a very welcome development because it presents a great opportunity for linkages and collaboration. It is my hope that through the platform of GHN we can “meet” with their people/ organizations with a common vision and interests and that we can work together to achieve our mutual goal to the benefit of the many children living with CHD, RHD and their complications. Our hospital would also like to partner with organizations that can assist us in building up a cardiac program. If through the platform of GHN such a partnership could be established and sustained that would be hugely impactful for my hospital and community.
Here is a heartfelt story written by Mark Lawrence Jaleco a patient that had surgery in Geneva in June. Thank you to all our supporters for helping through the Travel Fund getting Mark Lawrence to Geneva from Manila for surgery.
Here is what he has written:
“A DAY TO REMEMBER GHN, GENEVA I am an active teenager. A band member in my grade school, and a basketball player in my highschool. I was seventeen years old when I was caught tonsilitis, my mother took me to the hospital and I was diagnosed with RHD. Due to low financial income, I was not able to continuously purchase my medicines. On May 2012, 7 years after, I became sick again, my cardiologist advised me for an operation to prevent further complications. In spite of our low family income, my parents tried to send me to Philippine Heart Center, Manila – the only hospital in the Philippines that specializes heart diseases. After thorough examination, the same solution was given to repair or replace the torn leaflet of my heart. After assessment, the cost was too much, and we could not afford it. At home, my father confided our problem to a friend who happened to be Sheryll’s first cousin, he told the story of Sheryll and GHN. Luckily, Sheryll is one of my classmates in grade school. She is my angel. She helped me got connected with GHN and Ma’am Annabel. Since then, everything just go in place, with the great help of Ma’am Annabel. May 11, 2014, my flight to Geneva. I am nervous, but determined. May 12, 2014, I arrived at Geneva, Thank God! Mr. Ung was there to help me. May 13, 2014, I have myself admitted at HUG. May 15, 2014 8 a.m, my schedule for an open-heart surgery. May 16, 2014, I woke up with a smile on my face, thanks to Prof. Kalangos and his team. I surpassed the operation. So much Thank to Ma’am Annabel, for her kindness. Although, we haven’t met personally, I can feel her motherly affection. Also to Ma’am Catherine, in spite of her busy schedule, she spared her time to look what’s best for me. A heartfelt thank to Prof. Kalangos and his team for a job well done. To all the nurses and staff of HUG, for their kindness. June 1, 2014, my family fetch me at the airport with tears of joy in their eyes. A million thanks to GHN Foundation for giving me a new life, a new hope, to fulfill my dreams. More power! God bless you all! Sincerely yours, MARK LAWRENCE”
We look forward to our next blog, where we will portray the situation in Yemen, talk about our hopeful work in Senegal, and keep you posted with recent postings of needs and resources. We hope you have enjoyed this blog, and we thank you in advance for your interest and support in the mission and vision of Global Heart Network.
For any further information or interest in getting involved in Global Heart Network’s work to help increase prevention, diagnosis, treatment and care, and to help get patients to heart care at Global Heart Network please contact us.
The Global Heart Network Team