The Genesis Foundation initiative: Saving Little Hearts

Congenital Heart Defects in children:

Congenital heart disease is the most common but often undetected contributory factor to infant mortality, world-over. The approximate incidence of CHD id 8-9/1000 live birth and 5% of these patients are categorized as critical congenital heart disease. If these babies can be detected early and can be referred to tertiary care centre at appropriate time, they can be saved and may have a productive life. Besides, if not treated on time many of them will go beyond the possibility of intervention and would lead a handicap life with suboptimal functional capacity and would be financial burden due to lack of capacity to have employment as well as rising need of hospitalization as well as need for various non-cardiac intervention.

The diagnosis is often missed because of various reasons, such as lack of sensitivity in society in general; lack of understanding amongst the pediatricians; no means of financial support particularly when parents are relatively young in absence of social security and insurance for congenital heart diseases.

Abnormal sound called “Murmur” is taken as hallmark of a CHD even in recent time. However, it is well established that only 20-25% of critical congenital heart diseases can be picked by presence of a murmur.

Recently, there is a global thinking to use pulse oximeter to check the oxygen saturation and any SPO2< 95 % must be investigated further. It is a good idea to make the public aware about the simple findings which a dedicated mother can pick up and may seek medical advice. These simple finding are:

1. A baby not accepting breast feeding and takes >20 minutes.

2. Blue color of nails, finger tips, tongue etc.

3. Baby having high respiratory and heart rate.

4. Perspiration

5. Failure to gain weight is one of most remarkable sign which can be picked up both by family and the medical person.

Fetal echo at around 20 weeks is one of the methods, which can inform us about the fetal cardiac diseases. This helps the parents in many ways. If a treatable CHD is detected, family can be ready with selection of a place of delivery where tertiary cardiac care is available. In our hospital (Jaypee Hospital Sector 128 Noida) we are regularly getting expectant mothers who were detected to have serious fetal cardiac disease. These babies were under tertiary cardiac care, right from first hour of birth allowing us to create best management plan and to get best result from complex cardiac intervention.

All said and done, detection of CHD at earliest, remain unfruitful in three fourth of cases for a simple reason that the expenditure related to heart treatment for underprivileged children is beyond the means of the family.

Baby Manvi, is one case whose parents were coming from Punjab and were unaware of seriousness of the disease and the financial burden they were due for upon finding out their daughter was suffering from Transposition of Great Arteries and required an expensive arterial switch operation. This is where Genesis Foundation stepped in, to support the heart treatment for underprivileged children, the Programme Manager – Pediatric Cardiology, Mr Srivatsan informed the hospital that the foundation will take the financial responsibility of the surgery, and to go ahead without any delay. Society must appreciate that there is something divine about getting such kind of help. Dr Rajesh Sharma, known world-over for his skill, took this challenging case at once.

Now, when Manvi comes to meet us she comes with a smile, and the usual tantrums children her age – everything totally normal as she is growing very well.

There is a long way to go for children with CHD, but there are angels to support their journey. With thanks to Prema & Jyoti Sagar for such a commendable organization that they have created with love and passion.