Overview of congenital heart disease in India

What is Congenital Heart Disease? It is a defect in the structure of the heart of the baby. t a d n This is the most common birth u o f born defect. 1 in 100 childrenrtare a e with this problem. h d / l i  Defect in the heart m involve ch comay . w n.values, arteries walls of the heart, w o w i / / and veins : of the heart. The defects s tp mayhtcause disruption, slowing down and going in wrong direction of place of the blood.  1,80,000 children to 2,00000 are

Types of CHD 4 types are majorly

known. t a d Hole Ventricular Septal Defects(VSD): n u lower o in the wall separating the two tf r a chambers of heart. e h d l i m/ Atrial Septal Defects(ASD): Hole in h c co . the wall separating the two upper w . w ion w chambers /of / heart. : s p Patent Ductus Arteriosus(PDA): Open t t h hole in the aorta. Tetralogy of Fallot(TOF): Collection of 4 abnormalities major one deviation

Signs and Symptoms of CHD Bluish tinge or color (cyanosis) to the skin around the mouth or on the t a d lips, tongue and nails. n u o f Increased rate of breathing and t r a e difficulty in breathing. h d l i m/ in feeding. Poor appetite orchdifficulty . .co w Sweating while n w iofeeding. w / / :  Failure s to gain weight or weight p t loss.ht Unexplained fever with decreased energy or activity level.

Diagnosis & Treatment of the CHD

 Some CHDs may be diagnosed during pregnancy using fetal echocardiography (a special type of t a ultrasound in which ultrasound d n u pictures of the heart of a odeveloping f t r baby is captured ). a e h detected until  Some CHDs are lnot d i m/ h after birth or .clatero in life during c w . childhood Treatmentorfor CHD children depends adulthood. n w o wandi severity of the heart / / on type  Ifthe a pediatrician : suspects a CHD the s tpis defect. children might need baby referred to a pediatric t h Some one or more and surgeries to repair the cardiologist get tests like fetal heart blood vessels.

Some can be echo or to confirm the diagnosis. treated without surgery using a procedure called cardiac

Present Condition of Treatment in India CHD The total number of cardiac centres approximates to 63. t  10 of these can be consideredahigh d n volume centres (more thanu500 o f t cardiac surgeries per year). r a e with CHD h  Approx 27,000 patients d / l i m underwent cardiac over a ch csurgery . o w (2016-2017). . one-year period n w w io / /  Of this,s:about 9,700 patients were p t t infants (<1 year), and about 1700 h were neonates (<1 month).  Considering the birth prevalence of serious CHD (requiring intervention

Regional Disparity  47 Centres in India are located in regions with lower burden of CHD.  States such as Uttar Pradesh, Bihar, Jharkhand and Madhya Pradesh, which presumably have t rest much higher CHD burden as compared toathe d of states, have fared much worse. n u o  The data suggest that children born tf with serious r aa 70% chance of CHD in Southern India have e htreatment. receiving good d l / i h  In contrast, babies c born in m Eastern and Central . o c lower chance of w parts of India have a .much w ioann intervention. receiving w / / :  Although s we have newly opened government p t institutes ht (All India Institute of Medical Sciences).  These institutes are already operational in various states, including those in eastern, central and northern parts of India.  The patient load is very high.

India t a d n u o tf r a e h d l i m/ h c co . w n. w w io / / : s tp t h Source: https://www.indianpediatrics.net/

Obstacles for Pediatric Cardiac Care in India Lack of awareness and delay in diagnosis

A substantial proportion of births in India occur at home, and the infant is likely to die before the critical, ductusdependent CHD is diagnosed. The resources for treatment of CHD are not only inadequate but also seriously maldistributed.

t a d n u o f t r Maldistribution of a e h resources d l i m/ h c cInvestment . o on healthcare is w . w ion one of the lowest in India. w / / : Deficit ofstrained There is no national policy for ttpall levels of CHD. staffhat healthcare No Strategies for Improvement of

Rapid population growth, competing priorities, inefficient and inadequately equipped infrastructure.

Continued……..

Obstacles for Pediatric Cardiac Care in India Most cardiac centres, especially Children undergoing those set-up more recently, are surgery are often in in the private sector and may not be affordable for the advanced stages of t majority. a disease with dfaced with a n Public hospitals are u of patients associated very large number o f malnutrition, the and havert waiting lists ranging a to years. months e results of intervention from h d The greatest barrier to l in such settings are / treatment of CHD is i successful h mcommon in states with expected to be less.c more o clittle or no cardiac care w . than ideal. n w

 Poverty ttp

h

w / / s:

Transport of newborns and infants with CHD

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facilities. There is practically no organized system for safe transport, The risks of developing hypothermia and hypoglycaemia during long, unsupervised transport further adds to the already serious condition of the infants with CHD of new-borns.

Continued……..

Obstacles for Pediatric Cardiac Care in India Financial constraints

Medical insurance is practically non t a existent in India, d  There is no national n birth u especially for policy for CHD. Rapid o f t defects. r In most population growth, a e instances, families are competing priorities, h dexpected l / to pay for inefficient and i h mtreatment out of c cthe inadequately equipped . o wa n. their pocket, which infrastructure, and w w staffio they can barely afford. / deficit of trained / :of s at all levels p Many families lose t t healthcare are some of h their wages as they the other major are away from work roadblocks to cardiac during care of these care of children with children.

CHD.

Strategies for Better Care To make Increasing meaningful awareness: reductions in Community t a mortality and needs to bend uto the morbidity from sensitized o f t r CHD, it is problem of a e imperative to congenital h d / l i focus on defects, through h m c . .celectronic o comprehensive and w w ion print media. new-born/w and :/ infantscardiac Targeting p t care.

Pediatricians and ht Preventive educating them measures and not just about screening: So diagnosing CHD far, little in a new-born,

How to Overcome the Challenges Optimal utilization of resources. Currently India has approximately t a d 110 130 pediatric cardiologists and n u o pediatric cardiac surgeons which is f t r a very less. e h d programs l / i Increase the training for h m .c early paediatricianswfor co diagnosis. . w ion w / successful schemes  One of the / : s p adopted t by Karnataka Govt, called t h Yeshashwini, is a microfinance scheme where each member of a cooperative group pays a nominal Continued…….. amount to create a corpus which is

How to Overcome the Challenges Several other states have similar schemes under different names. A t a number of initiatives by the central d n uhealth of government are directed at o tf r children. ea

e h d l / i h c com . Provision is also w provided for free . n w w io / treatment of children from families / : s below poverty line. p which are t ht

Poor patients can get financial help from Prime Minister’s Relief Fund and Continued……..

How to Overcome the Challenges Indigenization and innovation For cardiac surgery and interventions t a to be affordable, cost-containment d is n u of necessary. Currently, majority o tf r equipment and disposable a items e required for cardiacilsurgery dh / are being ch comhome grown imported. Encouraging . w n. w technology w will reduce the cost of o i / / : equipment s considerably.

tp t h

Providing financial support for treatment: A number of financial models are supporting healthcare in

Strategy for Cardiac Care  A flagship scheme of Government of India (Rashtriya Bal Swasthya Karyakram, RBSK) t a has been launched in February 2013awith d n mandate to screen all children, u aged 0-18 o f years for early detection and management t r a of birth defects and otherediseases.

h d l i m/ h c co .  Helping to subsidize services for poorer w . w ion patients. /w / : s p t t h Insurance is another way to provide high quality care.

Know More About How We Work

Child Heart Foundation t a d n u https://www.childheart o tf r a e foundation.com/ h d l i m/ h c co .

9999142268 w n. w w io / / : sunita@childheartfoun s tp t h dation.com