During the first few months of Aina’s life, Khairina, Aina’s mother, had to face first-hand the harmful misconceptions about congenital heart defects.
“I came across people who more than once asked about what I ate during pregnancy, whether I took enough supplements or was I taking medications, and what else I did wrong,” Khairina shares.
Due to the questions, Khairina realised she began to fall deep into a cycle of depression and self-blame. It took her months and then years to come to terms with herself and accept circumstances.
Aina, her daughter, had her heart defect diagnosed in the womb at 31 weeks. Aina was born with TGA, DORV and PDA.
Thousands of questions popped up for Khairina. “What will happen to her? Will she need life support? What if she doesn’t make it out of surgery? Where are we going to get the money for surgery? Can we afford all these costs?”
Aina’s first heart surgery was at a mere 18 days old. She went through an emergency Glenn shunt procedure 11 months later, and is due for her Fontan surgery in a few days (at time of writing).
Costs for heart surgeries are exponential. Khairina shares that the biggest challenge was getting enough money for surgery. Each surgery cost ranged from RM15,000 to RM100,000. In the end, all of Aina’s surgeries will cost a total of up to RM185,000.00. An amount that is no doubt heavy to any parent.
“Honestly, no one would notice that she has a heart problem because she looks absolutely normal. She would sometimes turn bluish when it is cold & when she is tired, which constantly happens,” Puan Khairina tells us about Aina’s heart condition. “But her oxygen levels are still only at 80%. We hope it can get better with the surgery,”
“Congenital heart defects are not anyone’s fault. Nobody is to blame. Nobody can point a finger at the mother for being careless during her pregnancy and causing harm to her child. No. CHD is not something we can blame upon someone. It is something beyond our control,”
“No words can describe a parents’ grief looking at your child being sliced open, on tonnes of medication, weak and blue, crying in pain. It is a truly humbling experience which makes us realise we are powerless and only God has the power to help our child,”
Thank you Khairina for sharing the experience being a mother to a #WiraJantung.