Lack of awareness on Congenital Heart Defects in India
February 9, 2021 | Contributed by R Srivatsan
A Congenital Heart Defect (CHD) refers to a range of defects present from birth that affects the normal way the heart works. They are one of the most common causes of infant death attributed to birth defects.
Situation in India
Considering a birth prevalence of congenital heart disease as 9/1000, the estimated number of children born with congenital heart disease in India is greater than 200,000 per year. From this, more than 70,000 are diagnosed with critical CHD and need specialized treatment to survive even their first birthday. Specialized expertise to provide such treatment is now available in most parts of our country, yet, not all these babies reach a pediatric cardiac center in time to receive treatment. The reasons for this are multi-factorial. The factors resulting in delay of appropriate treatment can be classified into medical, social, and economic.
- CHD in a newborn baby results in breathlessness, feeding difficulty, decreased urine output and bluish discoloration of the extremities along with a decrease in oxygen levels of the baby. These signs are often subtle and may be associated with other more common newborn conditions like infections and maladaptation to life outside the mother’s womb.
Unfortunately, centers with pediatric cardiac expertise are mostly located in the private sector and are stand-alone departments not attached to teaching hospitals. Hence, trainees in pediatrics are not exposed to advanced pediatric cardiac diagnosis and management during their training years.
It is not unusual for pediatricians to consider alternative diagnosis for a sick baby with CHD. This results in precious loss of time before the condition is detected and the baby may deteriorate and even die during this period.
- All neonates with critical CHD have oxygen levels lower than 95%. However, this is difficult to recognize with our naked eyes. This can be readily recognized by checking the oxygen levels using a device called a pulse oximeter (an obscure medical device which had last year become very popular because of its ability to recognize COVID 19 infection even before severe symptoms set in).
Recognizing the limitations of detecting low oxygen levels with our eyes and the vast benefits of checking it with a simple, readily available device – most Western countries have made pulse oximetry screening of a newborn baby mandatory by law in the first 24-48 hours of life. Should the oxygen levels continue to remain below 92-95%, the babies are referred to a pediatric cardiologist (a specialist trained to look after children with heart defects) to ensure that the baby does not have a CHD.
The pulse oximeter is relatively inexpensive and readily available. The test is also very easy to perform and can be done by trained para-medical personnel at the mother’s side. It might prove to be an ideal strategy for a large country like India where primary health care has improved significantly in the last two decades, especially in the southern states where a vast majority of deliveries are institutional and supervised by trained medical and para-medical personnel. However, the practice is still not mandated by law in our country although it is highly recommended by the medical fraternity.
- Despite vast improvements in basic and advanced education in our country, it has been challenging to dispel several myths surrounding medical treatment in the rural parts of our country. The myths and taboos associated with it,gain even more weight when small babies have heart defects requiring an open-heart surgery.
In the minds of grandmothers and mothers from rural India, an open-heart surgery is something performed on alcoholic, smoking 50-year-old men who develop chest pain and breathing difficulty. It becomes impossible for them to replace the image of an ailing 80 kg man with a kicking and screaming newborn baby.
- Doctors often have to get involved in long and tediousnegotiations with grandmothers/parents/families who try to makethe doctors understand that 3.5 kg is not an ideal weight to perform an open-heart surgery and that thedoctors should wait till the baby reaches a certain weight. This is often a moving target and varies between 5 and 20 kg. No amount of scientific rationale will deter her from such pre-conceived notions and the more evidence you provide, the more determined such families become about their stance.
- Such situationsare not only seen in the family of the children, but many doctors are of the same opinion that a baby should have an optimal weight before being referred to a tertiary hospital for treating the children with critical heart defect.
India has world class facilities to perform open-heart surgeries on sick and critical babies. For example, the Arterial Switch Operation, a surgery performed on blue babies with a condition called Transposition of Great Arteries, which needs to be performed before the baby crosses 2-3 weeks can be done in most pediatric cardiac units at a cost of $3500 in India whereas, a similar surgery in the U.S is likely to cost more than$30,000.
But even this is out of the reach of most families in our country who have a yearly per-capita income less than the quoted sum and who live a literal hand to mouth existence.
What lies ahead
- Focused training programs for pediatricians highlighting the recognition of critical CHD in the newborn baby, immediate stabilization as well as the potential referral pathways has resulted in an increasing recognition in recent years.
- A pilot project on universal pulse oximetry screening for all babies born in government healthcare facilities in Kerala has started yielding results and this is being noticed by other state governments as well.
- Government insurance programs for the vulnerable population have been expanded to include congenital heart defects. And wherever this is lacking, non-governmental organizations like our Foundation, through which anyone can donate for child surgery in India, have taken the lead to help families in relieving themfrom their medical and financial crisis.
A film on the struggles of parents with children who are diagnosed with CHD
- Our country needs mass awareness programs, especially in semi-urban and rural parts of the country focusing on the seriousness of Congenital Heart Defects, the need to identify them early and the excellent long-term outcomes with most cases being correctable heart defects
Awareness for Congenital Heart Defects is primarily needed at three levels, including the general population, the medical fraternity and amongst corporates so that they can donate for child surgery in India through their CSR initiatives. Congenital Heart Defects have continued to be a cause of infant mortality in India, and only awareness for timely medical intervention can improve this situation.