European Heart for Children: A Humanitarian Project of the European Society of Cardiology

In this interview, EP Lab Digest speaks with Mrs. Claudia Florio Ferrari about the “European Heart for Children” project. Tell us about the launch of the European Heart for Children. When and why was this initiative formed? When my husband was elected President of the European Society of Cardiology in May of last year, I was surprised to discover that the ESC was not involved in any humanitarian project. Since then, with the support of the Board and the help of other cardiologists and their wives, we have come up with a concrete project to help children with congenital diseases; this was launched at the ESC Congress 2009 in Barcelona at the beginning of September. Europe is a continent with many contrasts, and in some countries the treatment of congenital heart disease is still not widely available. What services will the European Heart for Children offer? Who will be participating in this initiative? The “European Heart for Children” project involves three steps: 1) bringing humanitarian missions to operate on children in the targeted countries; 2) training doctors, nurses and technicians to take the skills back to their own countries; and 3) helping the countries financially and professionally to set up a unit for the treatment of congenital heart disease to allow treatment of children in their own countries. A medical mission will initially visit two countries that are members of the ESC, where treatment of congenital heart disease in children is suboptimal. The countries will be identified from ESC National Societies providing statistics on the number of congenital heart operations undertaken in their country each year. The intention is to demonstrate both to the medical and political community the potential for treating children with congenital heart disease. Missions, typically lasting for six to seven days, will review around 100-150 cases identified by the local national societies, selecting around 15-20 children for immediate surgery, with the more complex cases being offered the chance of surgical interventions in more advanced Western centers. Describe the medical missions that have already taken place. Are there upcoming medical missions planned as well? Will the missions be focused to certain countries in particular? The first mission took place in Damascus, Syria, from April 18-20th. It was conducted in partnership with the Association Bambini Cardiopatici nel Mondo. Syria was chosen because Bambini Cardiopatici nel Mondo has been collaborating with the University of Damascus for more than 10 years and has operated on more than 70 children. A center for diagnosis and treatment of congenital heart disease was built and is due to open in October 2009. This will offer treatment for 800-1000 babies per year. If the initiative proves successful in two pilot countries, it will be extended to others demonstrating a need. In our selection as well as identifying countries that undertake limited surgery, we'll also look to detect those countries that have a good possibility for success. They'll need to have politicians who embrace the idea and are willing to fund a new department of congenital heart disease three or four years down the line. The aim is especially to promote treatment of congenital heart disease in European countries where treatment is difficult. Another mission will be carried out before the end of this year. Who can participate in the European Heart for Children’s missions? Anybody can participate! We need doctors, nurses, anesthesiologists, and intensivists who would like to help us with the missions. However, we are also looking for different ways of funding the initiative. During the ESC Congress, for instance, we sold merchandise bearing the European Heart for Children logo, we held a humanitarian gala dinner, and piggy banks were dispersed around the exhibition. We have plenty of more ideas to attract donators. A dedicated ESC account has been set up exclusively for European Heart for Children donations. The account details are as follows: Banque Populaire Cote d’Azur, IBAN FR76 1560 7000 6537 0190 4239 128, BIC/SWIFT CCBPFRPPNCE. All contributions are welcome. Tell us about your participation at this year’s ESC meeting. At the opening ceremony of the ESC Congress 2009, I presented a short five- to six-minute film of the recent mission in Damascus, Syria, with Bambini Cardiopatici nel Mondo. In two days, the team of doctors reviewed the cases of 52 children, operated on six children and referred three for specialist treatment in Italy. However, it was a three-month-old baby boy called Ali who left me with a lasting impression. During the operation we saw him literally turn pink before our eyes. Nothing can describe the joy of a mother who gives up a blue child to an operation and gets back a pink one. Recognition came for the “Europe Heart for Children” initiative, when I was awarded a Gold Medal for humanitarian action from the Cardiovascular Institute of Madrid, which will be presented on September 18, 2009, in Madrid. The most marvellous thing about this award is that Siemens is donating an echocardiography machine, which should really help to get the humanitarian project off to a good start. Approximately how many children in Europe are affected by congenital heart disease? While the majority of ESC national cardiac societies are able to offer adequate treatment for congenital heart disease (defined as a mean ratio of 1,000 or more operations per 1,000,000 inhabitants), there are still countries in transition offering less than 100 operations per 1,000,000 inhabitants. Congenital heart disease can be treated where there are adequate health care systems. Unfortunately, this is not the case in every ESC member country. The aim of this initiative is to bring all the ESC countries up to the same high standards for treating children with the disease. What are some of the challenges being faced today in the treatment of congenital heart disease in Europe? Worldwide, one million children are born with congenital heart diseases every year, of which only 200,000 have access to proper care. The situation in the 52 countries represented by the ESC (located in Europe and around the Mediterranean) is much better, as the majority of the ESC National Cardiological Societies are able to offer treatment with a mean ratio of 1,000 operations per 1,000,000 inhabitants, which is considered satisfactory. So the challenge remains great in other areas of the world. What are the European Heart for Children’s goals for the future? The aim of the initiative is to directly or indirectly address the need for adequate health care for children with congenital heart disease, bringing all countries whose cardiac national societies are members of the ESC up to the same standard. What advancements would you like to see made in the treatment of congenital heart disease? The question is more about the access to treatment than about the advances. Congenital heart disease is curable where there are adequate health care systems. Is there anything else you would like to add? This initiative is a dream ... and sometimes dreams come true. The ESC alone cannot achieve the aim of making treatment available to all children who need it. Governments, politicians and other NGOs need to build and equip healthcare structures that are able to care for their children. European Heart for Children is here to create awareness that treating all babies with congenital heart disease is a priority. Please visit the ESC website where a dedicated page has been created for the European Heart for Children under “Initiatives.” The film from the first mission can also be viewed on YouTube, just enter “European Heart for Children.” For more information, please see: www.escardio.org www.youtube.com/watch?v=klQoYxbcdTI www.bambinicardiopatici.it