18/11/2021
Every year 2.5 crore children are born in India.
More than 2,00,000 children are born with heart disease, one-fifth of whom, about 40000, are highly likely to be in a serious condition requiring surgery within a year of birth.
A baby's heart development starts very early in pregnancy and almost completed at 6 to 8 weeks of pregnancy. If any derangement occurs at this crucial time period, then the baby will be born with heart defects.
Congenital heart disease is a general term for a range of birth defects that affect the normal way the heart works. The term "congenital" means the condition is present from birth. That is known as Congenital Heart Disease.
In this condition, the entire left side of the heart, including valves and blood vessels, is underdeveloped. Without prompt treatment, the baby is likely to die within days or weeks of birth. Symptoms include a grey complexion and severe breathing difficulties.
Babies with critical CHDs need surgery or other treatment within the first year of life. Without treatment, critical CHDs can cause serious health problems and death.
Children with congenital heart disease (CHD) experience a high prevalence of developmental delays and disabilities in early childhood. Children with CHD can have significant emotional problems, such as anxiety or depression.
Parents suffer emotional breakdown and experience "denial", "sadness", "isolation", "shock", "feeling guilty " and "experience the most difficult moment in parenting life.”
For some parents, a child's CHD can be a crisis. Therefore, they deny it and do not seek treatment or seek confirmation of diagnosis by several doctors. "My husband said our baby is healthy and don’t need to seek treatment. The doctors are wrong" said a mother.
I have heard mothers go through severe shock. They described it as “When doctor told me about my child, it felt like somebody poured a bucket of boiling water over my head", "when I found out my baby has a heart disease my legs broke" "I died and lived again", "I don’t know how my day and night are passing" and "I couldn't stand up on my feet", “I was unconscious for an hour and a half”.
“I didn't talk to anyone for a long time and I was just by myself. I didn't want to see anyone", said a mother. Parents often feel guilty for not diagnosing child's CHD during pregnancy, not seeking modern health care facilities earlier and for having given birth to the child. "We were upset that we didn't understand my son's illness," said a father.
Often, mothers sell their jewelry or their child’s jewelry or home furnishings, borrow from others to take their child to the capital's health centers to make sure they do everything they can to improve their child.
Many parents sell even their vital organs to cover the cost of their child's treatment, or to take them to modern health centers despite the severe financial poverty. "Sometimes when we would go to the doctor, we would buy food for my son, but my husband and I would go back home hungry” said a mother.
Parents are often suffer from anger and guilt because of unawareness of the cause and process of treatment and care, consecutive visits, economic consequences of child’s illness, child suffering during illness, separation from the child, lack of knowledge about the future of the disease, disordering life and routine family activities. "When he needed surgery, we were in hospital for over one month with my child alone. I hoped to have one hour to take a rest somewhere. My feet were swollen and I wished to take the shoes off” said a mother.
Many parents experience emotional separation. “We are living together, but we are separated," said a mother. “In her world only the child exists, I am not there” said a father.
Most of us are lucky. We have healthy children. We can kiss, play, run, laugh, feed, climb, jump, sing and dance without any fear that our child would faint, fall, gasp for breath or die. Even with such healthy children many of us experience anxiety. Can you help us with a donation of Rs 500 or multiples of 500 as token of gratitude for having a healthy child?
Girija Deshpande wants to raise funds for Dil Se...Primarily for Heart Surgeries of Poor Children. Your donation has the power to help them move closer to their goal amount. Please contribute.
