After an uneventful pregnancy, Tobias’ diagnosis of congenital heart disease only 12 hours after he was born came as a shock to father Alex Wong.
Twelve hours after his birth, Tobias began to turn blue, a condition also known as cyanosis. This is a condition where the skin, lips or nails take on a bluish-purple hue as a result of decreased oxygen in the blood.
Tobias was then diagnosed to have pulmonary atresia (an underdeveloped pulmonary valve) with a ventricular septal defect (VSD, a hole between the two lower chambers of the heart), which together are known as PA-VSD, a life-threatening condition.
The news of Tobias’ diagnosis left him feeling devastated, Alex recalls. The journey to getting treatment for Tobias was challenging physically and financially, but the mental challenges were the toughest – especially not knowing what to expect next.
At 1 month old, Tobias had his first PDA stenting procedure and at 11 months old, his first open heart surgery to repair the defect. Babies who experience cyanosis are also commonly called, “blue babies”, and prior to receiving treatment, Tobias would turn blue every time he cried.
After a successful surgery,, Alex tells us Tobias is now a very happy and active two year old.
From the experience, Alex tells us that he’s learned that health is everything and to always appreciate what we have. It made him a better father, husband and Christian and he credits his faith to God and to believe that God has His own arrangements.
Alex’s message to other CHD parents: Stay strong and you are not alone. Be positive and cherish every moment with your child, maintain your faith with God and to keep praying.
Today’s #WiraJantung is Tobias. Want to share your Wira Jantung story? Head to bit.ly/wirajantung now!