SINGAPORE — It has been more than a month since their fourth son was born, but Jamie Koit and Madam Bella Luong have had only one chance to hold baby Leon so far — when he was delivered on Dec 8.
A heart murmur was detected when paediatricians checked him at KK Women’s and Children’s Hospital (KKH) the next day. The parents were then informed that their newborn has a congenital heart defect.
Leon was born with pulmonary atresia — a condition in which the valve of the pulmonary artery, the main blood vessel to the lungs, is not developed and blocks essential blood flow.
Barely three weeks and two operations later, he suffered two strokes. One affected his peripheral vision while the other affected the right side of his body.
He is still in the neonatal intensive care unit, needing to be tube-fed, and is receiving injections of blood-thinning medication twice a day.
The routine is expected to continue for the next three months, but all his parents want is to be able to cradle him in their arms at home. He is slated to be discharged on Jan 21.
"When the doctors first told us about his condition, we just had so many questions racing through our heads," said Koit, 41, in a phone call from KKH.
"Why wasn’t this detected earlier? What’s going to happen now? What does this mean for Leon in the future?"
According to the Cleveland Clinic in the US, pulmonary atresia occurs in about one in 10,000 live births.
The survival rate without surgery is about 50 per cent at the age of one.
In Leon’s case, he went through a surgical procedure on Dec 14 to create an opening in his pulmonary artery. But the six-hour procedure was unsuccessful, and he underwent another one five days later.
This time, a small tube, or shunt, was inserted near his heart to allow blood to flow.
Because Leon is still growing, it is only a temporary measure. When he turns 18 months old, he will need to undergo cardiac surgery.
"We were told that there’s a five per cent to 15 per cent chance of dying if he undergoes the surgery now; 18 months is when the risk gets lower.
"After all this, he’ll have to go for rehabilitation and physiotherapy as well because of the strokes, although it’s still too early to tell if there’ll be any effects on his development," said Koit, who works in the finance industry.
Every day is a heart-wrenching ordeal, he added.
"Having to watch your child suffer and not being able to do anything about it, it hurts as a parent."
In the meantime, the family has set up a fund-raising campaign on Give.asia with the aim of raising $70,000 to pay for Leon’s medical procedures.
Government subsidies and MediSave have helped to offset the bulk of the bills, and the donations will be paid directly to KKH.
The campaign has already amassed more than $41,000 since it began on Jan 12. Those who wish to help defray the costs of Leon’s medical treatments can do so at give.asia/campaign/big-heart-for-baby-leon
This article was first published in The Straits Times. Permission required for reproduction.