Bringing visibility to a great NGO working in Bolivia – Fundación Cardioinfantil

This month we interviewed Fundación Cardioinfantil working hard to bring heart surgery to Bolivia. We hope this lengthy interview will bring interest and further connections and cooperation with each other. Fundación Cardioinfantil are a prime example of the need for our Global Heart Network: they do not have access to all information about stakeholders that do a similar job and have no access to contact them and even institutions that might support them.  They are hoping that GHN will help bring them more visibility and discuss and find solutions to the needs and resources in Bolivia.  They are currently looking for stakeholders working in the field of reduction of incidence of rheumatic heart disease in LMICs and share experiences in proving cardiac care in LMICs.   Please do not hesitate to contact Camila  or connect directly with GHN for more information.

Please Introduce yourself:

Our NGO name is Fundación Cardioinfantil In year 2003  doctors Alexandra and Franz Freudenthal -both Bolivian- returned to La Paz after concluding their medical specialization in pediatric cardiology in Germany. After two years of giving diagnosis to cardiac children, they realized only 12% of the patients got the treatment (surgChipiriri (23)ery or therapeutical cardiac catheterization) they needed due to lack of resources. There is a single cardiac centre in Bolivia with over 30 years of experience within the field. The price of a heart surgery is unreachable for most of the cardiac children. This dramatic situation drove them to found the NGO based in Bonn, Germany to fundraise for lifesaving heart surgeries that take place in Bolivia. Locally, the Fundación Cardioinfantil was created in order to identify the children, and get them the help they need.

The mission of our NGO is to help low income patients and patients from rural areas of our country. In order to reach them we work with a wide network of pediatricians and doctors in the main hospitals of the urban cone of La Paz, city. Rural patients are regularly referred to these hospitals from health facilities in their villages. In this way we can reach an important quantity of cardiac children of the department of La Paz. In order to reach rural patients from other parts of the country we travel once a year to another region of the country and visit a rural health facility in order to offer diagnosis and access to treatment for cardiac patients. Rural Bolivia is like another world. Urban Bolivia has some modern facilities (very often overcrowded health services), but there patients are more likely to find specialists and get care or support. Rural Bolivia faces a lack of doctors, very often a limited number of doctors are responsible of providing care to two to three towns. Not only human resources are limited but also infrastructure and the means to perform prover diagnosis.The biggest challenge we face is dealing with rising prices from the hospital, where our patients get their treatment. This conditions our support since the only way to fund surgeries is through fundraising. One of the most outstanding patients’ story is from Rolando C. He was 13 when he was refered to a hospital of the urban cone back in 2007. His diagnosis: tetralogy of Fallot. He lived with his family in northern rural La Paz, rain forest. He was so affected by the disease that he could not walk anymore to school, but education was so important to him that his father carried him daily to school.  Rolandos’s family recurred to alternativel medical methods to “fix his heart”. Rolando visited some rainforest shamans before visiting the doctor in the city. The doctor at the hospital called our specialists.  The surgery was scheduled for the next day. He was transported to another city for the treatment. The surgery was sucessfull. Rolando ended up graduating from high school, going to college to become an Auditor and running his own family business. He provides a work place to most of his family and is healthy.

Fundación Cardioinfantil  in Bolivia Chipiriri (14)Our hope is that one day every single cardiac child in Bolivia will have access to treatment regardless of their income. We hope young doctors will tend to work to help patients in need and most important to do the best they can with they have where they are. We always had young doctors in our team. They are mostly trained for a period of time and keep on with the especialization in the field of peadiatric cardiology or others related.

We are inspired by the beauty of our country. Bolivia is an amazing country with high snowed mountains. The Andes take our breath away daily. We also have a never ending jungle, valleys, salt flats, interesting cultural
expressions, many ethnic groups, glorious food and very kind people.

Poverty is complex and a multidimensional phenomenon, which has to be solved from many dimensions. We think investment in health is one of the most cost-effective approaches to fight poverty. You are not only working to provide care to those in need, you are giving them  a life-chance, so they can choose the path they want to follow to become who ever they want. Of course health policies go hand in hand with proper education policies but we strongly believe that good health policies will help Bolivians to get out of poverty. Chipiriri (41) Chipiriri (29)

We are also inspired by the work of many people in other parts of the world that wants to improve the quality of life of cardiac children. There are so many inspiring stories from all around the world: in India, in Argentina, in Colombia, in the US, in Germany, in Austria, in Spain. All these experiences inspire us and give us the strength to reach our goal.

What do you feel are the biggest barriers to increasing access to cardiac care in your area?

Analyzing our health care system we conclude there barriers in all three levels. Some barriers at the primary level are the lack of tools to suspect from congenital heart diseases prior and after birth. Distance is also a barrier, especially for rural patients. Cardiac children are often refered to urban hospitals, but for some families costs associated to travel are a burden. Most families decline the trip and children stay in their rural communities without any treatment. There is an empowerment barrier at the secondary level. Very often peadiatricians think they cannot provide proper cardiac care and do not help the patient in searching for a solution to their problem. Patients need to get an answer. This can change with the empowerment of nurses that have most contact to patients.

At the tertiary level there is a lack of resources to get high-tech equipment and all the medication needed to offer proper cardiac care.

What is the single biggest need your organization has in achieving its goals and mission?

The single biggest need in achieving our goal and mission is the fact that cardiac children deserve a better quality of life like every other human of the planet. Having access to cardiac care should not depend on income or the place you where born in.

We are running a Project at the Children’s Hospital in La Paz to build the first pediatric cardiovascular department within the public health system of the country. The project consists in supporting capacity development in the field of peadiatric cardiology and intensive care unit  in order to improve the quality of health care at the Hospital. Medical and nursery staff are being trained in the Children’s Hospital “Juan P. Garrahan” in Buenos Aires, so that fresh- trained team can support young patients with heart pathologies during the surgery and after the procedure. The project will run until June 2016. The staff at the hospital has not yet started with basic heart surgery procedures but first surgeries are planned for January 2016.

Additionally we are training doctors, peadiatricians and nurses that work in hospitals of the urban cone and in rural health facilities of La Paz, Potosí, Chuquisaca and Oruro. Our goal is that cardiac children are identified soon enough and referred to the Children’s Hospital of La Paz so that they can get  treatment.

News from the Board

GHN Board of DirectorsLast week the GHN Board met in Geneva as a formal kick off to our Strategic Planning. Our search for our first Executive Director is now concluded and Myrtidiotissa Petropoulou will be introducing herself to you all shortly with our plans and cooperation details with hospitals with the potential to help humanitarian needs that come from the network. We remain focused at our mission to increase access to cardiac care, and working closely with our members to improve the technology to serve your needs. In September you will receive an impact survey designed specifically for GHN Members and those working in cardiac care in low and middle income countries to understand their communities and how people use and/or would like to use the GHN platform – so please take some time to respond to this important survey. Please contact us to be sure you are included in this important survey,
http://bit.ly/1EwSX9Q

Member Profile – Dr R Prem Sekar

From Left to Right: Annabel Lavielle - GHN, Dr Ravi Agarwal, Madras Medical Mission and Dr Prem Sekar - Kauvery Hospital
From Left to Right:
Annabel Lavielle – GHN, Dr Ravi Agarwal, Madras Medical Mission and Dr Prem Sekar – Kauvery Hospital

In our monthly newsletter we continue to seize on the opportunity to introduce you to other Global Heart Network members with the aim of helping facilitate communication, that will lead to   collaboration and cooperation amongst you all.

This month we are focusing on Dr.R.Prem Sekar   MBBS.,MRCPI (Paed)., FRCP (Glasg), Senior Consultant Paediatric Interventional Cardiologist at Kauvery Hospital in Chennai . Over the last 18 months we have been working closely with Dr Sekar exploring opportunities for increasing access to care for the underserved. We also had the opportunity to finally meet with him at the 11th Global Forum on Humanitarian Medicine in Cardiology and Cardiac Surgery at the Geneva University Hospital, Geneva, Switzerland at the end of June.  Here is a photo of me with Dr Sekar, and Dr Agarwal, Senior Consultant Pediatric Cardiac Surgeon at the Madras Medical Mission, Chennai who will be featured in a future newsletter. It has been a privilege for us at GHN to work with both these magnificent human beings, who do so much for the underserved, and embrace the concept of a network, nationally and internationally to sustain and increase our efficiency and quality in cardiac care in low and middle income countries.

We interviewed Dr Sekar and this is what he has to say:

1.What do you feel are the biggest barriers to increasing access to cardiac care in your area?

As recently as in the previous decade, the proportion of children in India, growing up with undiagnosed cardiac problems was a significant number. This was attributed to factors such as the absence of a centralized newborn screening & reporting programs as well as the grossly deficient pediatric cardiac care delivery programs in the country. However, this decade has witnessed   tremendous growth in the number of pediatric cardiac centers, pediatric cardiologists and pediatric cardiac screening camps resulting in a significant decrease in the proportion of children with undiagnosed cardiac problems or late presentations.

The biggest barrier to access of cardiac care in southern Asia and India now is primarily the lack of financial affordability. This is because the majority of the patients are from economically challenged strata of the society and public hospitals with free pediatric cardiac programs are few in number and in some Asian countries totally absent. The predominant drivers of pediatric cardiac programs are the private sector hospitals with some form of public-private partnership where the subsidy offered by the government for cardiac procedures is insufficient.

Abdul Sudi Aged 4
Abdul Sudi Aged 4

2.What is the single biggest need your organization has in achieving its goals and mission?

The goal of Kauvery Paediatric Cardiac Care is to provide optimum cardiac care irrespective of the financial status of the child or of geographical boundaries.

The biggest need of our organization to achieve this goal and succeed in this mission is adequate funding for cardiac procedures.

3. What is your organization doing to make global access to cardiac care sustainable?

Towards supporting the cause of serving children with heart disease from financially underprivileged section of the community, the hospital has on 3rd August 2014, launched `SHINE@Kauvery’ – a save heart initiative for children. This is a sincere effort to instill hopes in the hearts of little ones who would grow up and shape the country`s future. The project`s primary objective is to provide partial financial assistance to children from underprivileged section of the society, irrespective of their place of origin in the world. Additionally, the project will also act as a platform for a Parent Support Group for parents of children who have undergone cardiac procedures at Kauvery Hospital, empowering them to help each other through interactions and to offer support to parents of children awaiting cardiac surgeries. The Corpus fund, gained through donations from kindhearted donors and charitable organizations, will be used for partial relief of financial needs for in-hospital procedures in deserving children and adults with birth defects of the heart.
4.Describe any collaborations your organization has had with other organizations or stake holders working in similar fields to your own? Has there been any limitations to your communication?

Have a Heart Foundation is a charitable trust based in Mumbai who work closely with Kauvery Paediatric Cardiac care supporting children needing open-heart surgeries with partial funding. Having their representative based in Chennai has ensured that there is no limitation in communications.

Women’s Welfare Syndicate Public Charitable Trust is a Non Governmental Organization based in Chennai who help by partially funding cardiac procedures as well as with advertisements in newspapers appealing for help on behalf of the needy children.

Collaboration with Global Heart Network has been the most promising as the ideologies of our organization and that of GHN appears to be matching. Global Heart Network has been a platform through which Kauvery Paediatric Cardiac Care could get international recognition and associations, the most prominent of them being Samahope. Samahope is a NGO based in San Fransisco, USA that works by identifying high impact but under-resourced caregivers and matches them with donors through crowd funding. After an introduction by GHN, Samahope representative visited Kauvery Hospital in April 2015 to evaluate the on-site facilities & needs. Kauvery Hospital was then identified as a High Impact center for interventional cardiac procedures in children with assurance of partial capital support from Samahope for children undergoing catheter based curative procedures in the heart such as device closures of ASD, VSD, PDA, balloon & stent angioplasties.   Despite being in different continents, the medium of internet has ensured there is no limitation in communication with GHN and Samahope.

5.How do you envision an online platform (like GHN) that aim to improve communication and collaboration amongst stakeholders being able to help you achieve your goals in your respective field?

An online platform like GHN with its network resources could not only open up access of global cardiac care to patients in this region, but could facilitate the reach of skillsets available in this region to the needy in the subcontinent, thus saving on huge costs as well as ensuring speedier intervention.

We remind readers of Global Heart Network’s mission to amplify change and increase patient access to cardiac care across the globe by  connecting independent efforts and initiatives to people in need. We have created an online platform, that acts as a portal for collaboration and communication to become a resource management tool serving professionals within the non-profit, philanthropic, government, and international development sectors, as well as medical personnel, volunteers and the patients. Join GHN Network today, or Contact us

Message from GHN in Chennai, Prithi Polavarapu

Ranjini visits Dr.Sreemati returning for a check up after his operation
Ranjini visits Dr.Sreemati returning for a check up after his operation

Ranjini visits Dr.Sreemati again this week for a follow up after her surgery. Incidentally, I was at the hospital then and had the pleasure of meeting her again. She seemed much healthier and vibrant than what she was on my previous visit. She was running along and smiling the whole time; it was almost hard to believe that she had gone through an major surgery just a couple days before.

“The best and most beautiful things in the world cannot be seen or even touched. They must be felt with the heart.”

We will be updating you soon on the work we are going to accomplish between four hospitals in Chennai. Collaboartion with a heartfelt meaning to increase efficiency and access to under privlidged patients.

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Launch of 11th Global Forum on Humanitarian Medicine in Cardiology and Cardiac Surgery

GHN Team Myrto Nikolakou & Annabel Lavielle have just arrived at http://www.gfhm.ch in Geneva, 11th Global Forum on Humanitarian Medicine in Cardiology and Cardiac Surgery founded by GHN Board President Professor Kalangos and starting tomorrow Thursday June 25 2015 at University Hospital Geneva. We are here to collaborate with GHN Members, engage with new members, listen and learn. As we prepare we just met with Dr Sreemathi who as you know we are helping increase access to Surgery in Public Health Center. Such a plus to see Sreemathi again and meet members of her Chennai team. Join us live stream via periscope on the THN Twitter Handle GHeartN to hear Dr Sreemathi talk about “Solutionfor hte Less Affluents with Cardiac Disease – Trial Project in India” tomorrow morning. GHN Will be live streaming some of the sessions throughout Thursday and Friday for those who cannot make it. Follow GHeartN on Twitter, Opening of 11th Gloal Forum at 9:00 am in Geneva by Professor Kalangos.Sreemathi photo

Meet Heart Patients Sudarshan and Ranjini at the Public Health Center in Chennai

This is a photo of me with heart patients Sudarshan and Ranjini
This is a photo of me with heart patients Sudarshan and Ranjini

“Last week I visited the Public Health Center (PHC) in Chennai to meet with our dedicated heart surgeon, Dr. Sreemathi Seshadrinathan. I had the pleasure of meeting with two of the many children whose lives Dr.Sreemati had touched by treating them for heart disease. I saw Samahope’s funds, GHN’s efforts and Dr.Sreemati’s devotion come to life in these children who had the chance to have the operation they could not afford, which changed their lives. Sudarshan and Ranjini are children from the small village of Perambalur and come from families well below the poverty line. One can clearly tell by their looks that they are malnourished. They were timid and too shy to speak with me, but they did wear a wide smile when I asked for a picture. These are sweet little children whose quality of life should not be compromised based on their family income. Help them have a chance at a better life by contributing to GHN, where we are working hard to reach as many under privileged children as we can to save their hearts.” Prithi Polavarapu For more information about Global Heart Network and PHC’s work, and to connect directly with Dr Sreemathi : prithi@globalheartnetwork.net

Master Ranjani
Master Ranjani
Master Sudharshan
Master Sudharshan
Post Op
Post Op

H4H photo 5H4H photo

H4h Photo 2

“A touch of loving kindness”

Thank you Samahope!

Here is a lovely story of 7 year old Karan who was operated on at Public Health Center India, thanks to our Crowdfunding Partner, samahope.org.

“7 year old Karan was operated for Ventricular Septal Defect on 20th May. At the time of his discharge, his father Mr Ezhumalai told the team at the hospital his life without a mother from the age of 5 and full of trials, and no education. Whilst his half brothers and sisters became graduates. When he was 21 there was an arranged marriage & was sent out with his wife without a pie. For a living he started on part time jobs managed selling odds. He and his wife built a house from these earnings. With 2 children he started to live a contended life. Now the biggest blow of all came. He was told that his child Karan had a hole in the heart which could be closed only at a cost of Rs 2, 00,000/$3150 This shattered the entire family. They decided to sell their house. Karan was detected to have VSD when H4H team went to Perambalur for a camp. He managed to come to the camp from his remote village. He came for surgery and is waiting to be discharged. When he was told that SAMAHOPE was responsible for the surgery conducted, his eyes filled with tears and he said “Please tell them that I owe a lot to them. They have restored not only my son but also my house which is the only fruit of my labour. This is the only kindness I have felt in my all-hostility life. “

IMG_20150529_152527-2 IMG_20150529_152259-3Thank you Public Health Center for giving us permission to share this beautiful story to our supporters.

Do you know what Marfan’s syndrome is? Helping Nika to raise money for life-saving open-heart surgery

NikaThis inherited congenital heart defect involves the enlargement of the aorta – the large vessel that carries blood from the heart to the body’s tissues. This enlargement occurs near the aortic valve where the aorta leaves the heart – and may also affect the part of the aorta that carries blood to the body (the ascending aorta).There may also be abnormalities in the structure of the aortic valve and/or the mitral valve which connects the left atrium and left ventricle.

Marfan’s Syndrome (also known as arachnodactyly) is named for Dr. Antonin Marfan, who first described this condition in 1896. It is caused by a genetic defect involving the body’s connective tissue and occurs in approximately 1 of every 10,000 people.

Well here’s the story for today – a doctor in Sudan told a nurse in East Coast USA to contact Global Heart Network for a patient, a young mother named Nika, in Ukraine. Family members are trying to secure funds for her surgery which will take place we hope in Isanbul very shortly.

Read Nika’s story and help if you can

Heartfelt Thanks

Annabel