This document discusses the current state of pediatric cardiac services in India. It notes that India has a high birth prevalence of congenital heart disease (CHD), with approximately 242,390 children born with CHD each year. However, the availability of advanced cardiac care is very limited, with only 9 high-volume centers performing over 500 surgeries per year. While an estimated 43,000 children are born annually with serious forms of CHD requiring treatment, only around 8,500 (20%) currently receive optimal cardiac care. The document outlines several challenges facing the improvement and expansion of pediatric cardiac services in India, including limited resources, infrastructure, and trained staff. It proposes various strategies to address these issues, such as establishing more specialized

1. PEDIATRIC CARDIAC
SERVICES IN INDIA:
WHERE DO WE
ACTUALLY STAND?
D R . M U R T A Z A K A M A L
M D ( P E D S ) , D N B ( P E D S ) , D N B S S ( P E D C A R D I O L O G Y )
P E D I A T R I C C A R D I L O G I S T
1 9 / M A Y / 2 0 2 1
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2. DISCLAIMER
• Burden of pediatric heart disease (CHD), including lacunae in
current state, as well as challenges and opportunities for
providing optimal care to the large population of children
• To spread awareness of CHD and its available treatment
modalities in our country
• Not only to sensitise Cardiologists/Paediatricians/Physicians
but for parents of children with CHD, NGO workers,
government officials involved in health care system
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3. INTRODUCTION
• India: 2nd most populous country- 1.3 Billions
• Fastest growing major economies
• Globally 1.35 Million (13.5 lacks) kids born/ year with CHD
• All congenital birth defects: MC- CHD (28%)
• Birth prevalence of CHD: 8-10/1000 live births
• 2,42,390 kids born with CHD/ year
• Epidemiology quiet different from western countries
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4. PREVALENCE
• Birth prevalence increased over time after 1995: 9.1/
1000 live births
• Asia: High birth prevalence: High consanguinity
• Severe CHD: 1.5- 1.7/ 1000 live births
• Rise in birth prevalence of CHD till 2000: Better
diagnostic modalities; after 2000 most studies Decline
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5. RISK FACTORS
• CHD aetiology: Unknown- 85%
• Strong heritable basis: But genetic aetiology< 20%
• 10%: Chromosomal+ NC syndromes
• Maternal rubella (other viral infections)
• Maternal diabetes
• Family history of CHD
• Exposure to teratogenic drugs in 1st trimester
• Invitro fertilisation pregnancy
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6. RISK FACTORS CONT…
• Antibiotic abuse: Freely available over the counter drugs
• Increased parental age
• Increased maternal BMI
• Parental consanguinity (AR)
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7. GEOGRAPHICAL
DISTRIBUTION…
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8. CURRENT STATUS OF CHD CARE IN
INDIA
• Advanced cardiac care: Practically unavailable to 90% babies in
developing countries
• Cardiac centre: Population ratio
• North America: 1: 1,20,000
• Asia: 1: 1,60,00,000
• Africa: 1: 3,30,00,000
• Cardiac surgeon: Population ratio:
• North America/ Europe: 1: 35,00,000
• Asia: 1: 2,50,00,000
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9. CURRENT STATUS OF CHD CARE IN
INDIA CONT…
• 1.8-2 lack children with CHD born annually:25% needs early
intervention to survive infancy
• Total 62 pediatric cardiac centers: Only 9High volume centres (>
500 surgeries/ year)
• 2016: 24,000 CHD surgeries
• 1,600: Neonates
• 8,500: Infants (1,200 in year 1998)
• Serious CHD birth prevalence: 1.6/1000 live births 43,000
Only 8500 (20%) received optimal cardiac care (<2% in year 2005)
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10. CURRENT STATUS OF CHD CARE IN
INDIA CONT…
• Mostly private sector: Non affordable
• Resources: Inadequate+ Maldistributed
• Southern states: More centres, economically better,
better literacy
• Eastern and central parts: Practically no access to
affordable treatment
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11. OUR PROBLEMS ARE ENDLESS…
• Rapid population growth
• Lack of health care funding (1.4% of GDP, priority to infectious
diseases like TB, malaria, malnutrition etc)
• Competing priorities
• Inefficient and inadequately equipped infrastructure
• Deficit of trained staff
• Pediatric cardiac care is highly resource intensive, both in
terms of trained staff as well as equipment and infrastructure
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12. CURRENT STATUS OF CHD CARE IN
INDIA CONT…
• AN detection: Very low
• Many insurance companies do not cover
• 35% cardiac surgeries funded by families themselves (Cost may
be > annual family income)
• Government schemes cover about 40% of surgical cost; rest
charitable NGOs+ MNCs (20%), parent’s employer+ donations (5%)
• Charitable centres: Long waiting lists
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13. CURRENT STATUS OF CHD CARE IN
INDIA CONT…
• Religious, socio-cultural practices
• Seeking medical help at an advanced
stage
• Gender bias
• Chest scar- Marriage
• Poor health care investment by govt
• No national level policy for CHD
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14. THE SAD STORY IS…
• Many health professionals are unaware of the advances
made in the treatment of newborns with CHD and
parents are counselled against interventions for
apprehension of poor long-term outcome
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15. PREVENTION
• Difficult: Cause unknown in majority
• Reduction of fertility rate
• If FR reduced from 2.2 1.1/ women: CHD incidence
reduces to 50% of current birth prevalence
• Women empowerment/ education: Improved efforts for
family planning
• Parental counselling to avoid known risk factors
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16. 1. IMMUNISATION AGAINST
RUBELLA
• WHO: Single rubella vaccine: >95% long lasting immunity
• 1st trimester infected: 90% chance of transmission
• World: 1,10,000 kids born with CRS/ year
• India: 40,000
• Vaccine now included in schedule
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17. 2. FOLIC ACID FORTIFICATION
•NTD, also CHD
•Flour fortification: USA, Canada
•Canadian study: Fortification
Lower rate of cono-truncal defects,
COA, VSD, ASD
•
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18. 3. CONTROL OF CHRONIC
CONDITIONS+ ADDICTIONS
• Diabetes
• HT
• Cessation of smoking/ alcohol intake
• Avoid passive smoking
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19. 4. AVOIDANCE OF HARMFUL
MEDICATIONS
• Over the counter medicines
• Teratogenic
• Vit/ Fe/ Ca supplements in appropriate dosage
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20. 5. GENETIC COUNSELLING
• Parents with CHD
• Previous child with CHD
• Relative with CHD
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21. 6. FETAL ECHO
• Should not be considered as a tool to prevent CHD
• Termination of pregnancy may be considered for complex CHD
with adverse long term outcomes despite cardiac surgery
• 18-20 weeks
• > 20 weeks MTP illegal
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22. 7. OTHER MEASURES
• Harmful effects of organic solvents used in dry cleaning,
paint thinners, nail polish remover
• Avoidance of contact with persons with symptoms of
viral infections
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23. STRATEGIES FOR IMPROVEMENT
• Limited resources: Needs to be optimally utilised
• Health: State subject; Differ vastly in economy, literacy levels,
population, language, cultural beliefs and human development
indices—> One size fits all approach: Not tenable
• Mass immunisation against rubella and FA fortification
• Comprehensive programme which caters to the well being of
children
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24. STRATEGIES FOR IMPROVEMENT
CONT…
• Periodic education to sensitise practising
physicians and paediatricians
• People to be made aware of the availability
of advanced CHD care in India
• Screening neonates with pulse oxy: Useful
• Establishing more centres: Motivated team:
Government supported
• Piggybacking paediatric cardiac program
with adult cardiac programme
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25. STRATEGIES FOR IMPROVEMENT CONT…
• Cost containment (Home grown technology/ Middle man exclusion)
• Peds care more demanding: Structured training programmes
needed (130 Peds cardiologists/ 110 Peds cardiac surgeons (Non
dedicated)):Telemedicine, Internet
• Incorporating research into a program is very important and helps
in its sustainability
• Creation of a network so that patients can be referred to a
treatment facility which is available locally
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26. TAKE HOME MESSAGE
• Pediatric cardiac care is highly resource intensive,
both in terms of trained staff as well as equipment and
infrastructure
• A challenge: Huge number+ limited resources
• Need to tie our knots: Be optimistic for the future
growth and progress
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27. MURTAZA.VMMC@GMAIL.COM
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