Congenital Heart Defects... CHD as it is called... is a disorder of development in the structure of the heart, which has an incidence close to 1 in every 100 children who are born. With advancement in technology and increasing expertise being available, outcome following treatment of these children is becoming certainly encouraging.
As a physician treating children with CHD the journey has indeed been an interesting one. Each time we make a diagnosis, the first reaction of the family is that of despair and anguish, understandably so. To instil hope into them explaining the treatment options and the short term and long term outcomes, is quite an exercise. However, the way in which each of these families respond is different, and it does depend on their educational and social status, many a time it is irrespective of socio-economic status.
The most important factor in treating these children is Availability, Accessibility & Affordability of tertiary health care. When many of the affluent ones have access to antenatal diagnosis and have an option of decision making in pregnancy, many from the lower socio-economic strata are faced with surprises once the baby is born. Our public health system is overloaded to treat these complex patients - many of them turn to private hospitals. With new and comprehensive insurance schemes floated by the governments, public-private partnerships has helped many of these children to be treated.
It is true today that a lot of philanthropic organisations are contributing to the cause of CHD. To be able to deliver acceptable results and outcomes while treating high risk conditions comes with a cost. This cost can be optimised in order to make a program sustainable by adopting various methods. The most important step is early diagnosis and screening. Widespread screening camps helps identify a lot of children waiting to be treated. But most of these children are those that have survived the new-born period. To say the least, its indeed true that we are still lagging behind in identifying children with Complex CHD in the new-born period. Making pulse oximetry (measuring oxygen saturation) screening universal will go a long way in identifying many of these children early. Appropriate timing of diagnosis and referral certainly delivers better outcomes.
When availability and accessibility are taken care of, affordability is a major issue in Congenital Heart surgery. A lot of philanthropic support is available
to support underprivileged children, and Genesis Foundation is one such NGO - a children heart foundation helping to Save Little Hearts. A lot of children and families have been helped by their initiative. The role of the NGO in providing a holistic approach towards CHD is seen in their participation in screening camps, and most importantly in the post-surgery follow up of these children.
While there are a few financially assisted programs reaching out to more and more children, it is not without challenges. Such programs usually cater to low risk cases, as the high risk ones are resource intensive with variable outcomes. Donors expect zero mortality out of programs, which may not be the case all the time while treating complex children. In order to use resources optimally, it is a constant debate on whether to fund children with Syndromes, children needing staged procedures and palliative surgeries. A more cooperative approach between any children heart foundation and health care provider with optimal use of resources to provide the best outcomes, on an individual basis rather than generalised is key.
As it is said, "Knowledge is Power" but knowledge which is not used is futile. Such collaborations between Philanthropists and health care providers provides a great platform where the expertise available is made accessible and affordable to the common man. One has to agree that such high intense treatment of complex diseases cannot be a totally charitable one if it has to sustain long enough. This is better termed as Philanthropic Entrepreneurship, which is about creating a model that creates sustainable economies in a community with tremendous need. Let us continue our journey in creating more and more heart warriors.......
- Contributed by Dr Harapriya, Pediatric Cardiologist, Miot Hospital, Chennai