Expecting a baby is one of the most exciting experiences in life. But what happens when during the pregnancy or after giving birth, the doctor diagnoses your bundle of joy with a scary sounding disease that you’ve never heard of?
This was the case with the founders of Heart Kids SA, a non-profit organisation founded by parents of babies diagnosed with Congenital Heart Defects (CHD). CHD is defined as the abnormality in the heart that develops before birth.
According to Heart Kids SA, this is a leading birth defect in the world and affects one in every 100 babies.
This year, for the first time ever, the brave parents and their children marched in the Green Point area on Saturday morning to raise awareness about CHD.
Organiser Lizelle Retief,
said their main aim was to inform people about CHD, and teach how and when can it be detected. She said the most important message they want to send to expecting mothers is to go for regular check-ups from the time they are 20 weeks pregnant.
“Ask the doctor if your baby’s heart is okay, does he have all chambers, do you the see the blood flow in the right direction, are all the hearts valves in place,” she said.
Ms Retief said if they just could reach even five people with the march, that would be good because not many people were aware until they had a CHD baby.
She said they were planning to hold this march every year.
“My little boy was born with the heart defect and he had his first surgery at two days old. If I had opted for natural or home birth, I doubt he would have been here today,” she said.
Touching on the challenges of raising a child born with CHD, Ms Retief said the surgery was not a cure and the children had to be monitored for the rest of their lives. “These kids go through so much, sometimes they end up with speech delays, even if they go to school, they don’t fit in with the mainstream school but they’re not necessarily special needs, so there’s nothing in the middle for them. In terms of education, unfortunately, there’s not much for them,” she said.
Rene and Zayn Avon, from Mitchell’s Plain, said they came to the march in memory of their daughter, Zia, whom they lost to CHD when she was four months old in November last year. With tears rolling down her cheeks, Ms Avon shared how they lost their baby girl.
“The pregnancy was normal and she was born normally, but after one month the doctors found out that she had CHD. She was only with us for only a month, because she had to be in the hospital all the time.”
Ms Avon said when they found out about the disease, they knew nothing about it. They had to do research on it and to this day, they haven’t come terms with their loss.
“The stay at the hospital put a strain on us and financially it broke us, but being with her every day wasn’t bad because she made it easy for us, because you couldn’t see that she was sick,” she said.
Another mother, Rachel Davis, said her daughter, Rebecca Davis, 10, was being treated at the Red Cross War Memorial Hospital.
Ms Davis said it was only at five months that they discovered that she had a heart condition.
“We had to wait until she was nine months old, because she was underweight, to go for the angiogram,” she said.
Ms Davis praised the Wynberg Junior School for the support they’ve provided. She said when she started school, her daughter used to constantly get sick, and used to be isolated.
“In support of her, the principal and the school, Wynberg Girls’ Junior donated money to the hospital.
“She’s miracle, living proof, I put my trust in God.”
Cindy February said as the world is marking International Congenital Heart Disease (CHD) Awareness Week, which runs from February 7 to 14, they aim to walk the journey with families and to provide support to parents.
“This journey can get lonely, sometimes family members and friends can’t understand what you’re going through, we want to make sure that parents know that we’re available should they need support, and it’s a free service,” she said before she was interrupted by seven-year-old Luke February (also born with CHD) who shouted “Mommy, what’s the prize!?” after he completed his walk.