hree days after he was born Nong Prin began to breathe more rapidly and his skin took on a bluish tint. It became difficult for his mother to feed him because he would have violent choking fits which would leave him exhausted. As a result of his condition, the infant was not gaining weight and developing as he should.

Chairat Sirikanon is 11 years old. He enjoys school but cannot take part in sports or physical education classes. any sort of exercise – even playing around with his friends – wears him out. He often gets frustrated with his inability to lead a normal, active life.

These two boys were subsequently diagnosed as having a congenital heart defect.

“Sometimes, my son’s heart makes a certain sound,” said Ratsarin Saithongthanaphun, Nong Prin’s mother.

“I got a terrible shock when I was told that my son had a problem with his heart. It was very depressing to learn that he needed an operation to fix the defect. He was only a year and a half old. It was a catastrophe!”

That “certain sound”, Ratsarin spoke of, is called a heart murmur – a swishing or whistling that is very noticeable if listened to through a stethoscope. It is caused by a defect that changes the way the blood flows through the heart.

“But not all murmurs are a sign of congenital heart defects,” said Dr Kraisorn Juthacharoenwong, a paediatric cardiologist at Samitivej Srinakarin Children’s Hospital.

Symptoms of congenital heart defects can be detected in newborns a few weeks after birth, he noted. In severe cases, infants’ hearts fail and they need urgent medical attention soon after birth. less severe defects may not be diagnosed until a child grows older.

Each year, between 7,000 and 8,000 children are born in Thailand with heart problems. Doctors don’t know what actually causes most of these defects, but think that heredity may play a role.

“In about 15% of cases we know the reason for the defect,” he said. “For the rest, the cause has never been ascertained.”

Children with genetic defects often have congenital heart defects, with Down’s syndrome kids being a classic example. “Half of babies with Down’s syndrome suffer from congenital heart defects.”

There is also a link between congenital heart defects and the consumption of large amounts of alcohol and certain drugs by expectant mothers. Poorly controlled sugar levels in pregnant women who have diabetes are also associated with a high rate of defects. Mothers-to-be who contract rubella during pregnancy also run a high risk of giving birth to infants with heart defects.

“Street drugs, like amphetamines, can, of course, have a negative effect on unborn children, too,” said Dr Kraisorn. “Pregnant women should receive good prenatal care. Screening and diagnostic tests are important. Women carrying babies suffering from serious heart defects may be advised to terminate the pregnancy.”

Defects can be structural – a hole in the wall of a heart chamber, for instance, or a malfunctioning valve – or may be related to the way blood flows through the arteries and veins that connect the heart to the rest of the body.

Heart disease can occur in children after birth as a consequence of rheumatic fever, rheumatic heart disease, Kawasaki disease or a coronary aneurysm – a localised enlargement that causes the diameter of a section of artery to swell to more than 1.5 times the size of adjacent segments.

According to Dr Kraisorn, some infants and children with mild heart defects may exhibit few or no symptoms and so may not need treatment. Severe or complex defects that will require medication or surgery can give rise to symptoms such as shortness of breath, rapid heartbeat, sweating, fatigue or a bluish tint to the lips, skin and fingernails.

Some infants with heart problem may not develop at a normal pace. “They may be smaller or thinner than other toddlers of the same age and they may start sitting up and walking much later than their peers,” Dr Kraisorn said.

“In many children, a hole in the heart will close by itself. A tiny one may not need an operation. Patients may need occasional check-ups with a cardiologist as they grow to adulthood.”

Less serious heart defects can be remedied with medication or by inserting a catheter. Surgery may be the last resort for babies or toddlers with complex and/or severe defects.

“In many cases, a single operation can repair the defect completely. But some patients may require several surgeries over a period of time to fix the defect,” the cardiologist explained.

“The treatment options available to a child will depend on the types of defects and their severity. Factors also include the child’s age, size and general state of health.”

Each year, between 3,500 and 4,000 children in Thailand with congenital heart defects need an operation to prevent premature death or major physical underdevelopment. about 20% of them die within one year of their birth.

Due to limitations on medical personnel and facilities, state-run hospitals are only able to perform surgery on 2,000 to 2,500 of these cases. That means that 1,500 to 2,000 very sick children have to go on a waiting list.

“Samitivej’s Fund for new Life was created to help children in need,” said Dr Chanika Tuchinda, chairman of Samitivej Srinakarin Children’s Hospital and president of the Samitivej Heart Fund. “The paediatric heart project provides a good opportunity for needy children [both Thai and foreign].”

Launched in 2009, the project is a collaboration between Samitivej Hospital and the Cardiac Children Foundation of Thailand. It has set itself a short-term target of helping 60 underprivileged babies and children. That number was chosen to mark the 60th wedding anniversary of Their Majesties the King and Queen. So far 17 youngsters have been operated on, with a 100% success rate.

“To successfully perform an operation on a young patient with congenital heart defects, we require a team of well-trained medical personnel and an anaesthetist and good staff on the ward, plus all the necessary equipment and facilities. We think we have the ability to do that,” said Dr Surangkana Techapaitoon, deputy director of Samitivej Srinakarin Hospital.

Advances in diagnostic and surgical techniques mean that children with cardiac problems have a much better chance of survival than ever before. “Almost every single child with a congenital heart defect who undergoes surgery can grow to adulthood and lead an active life,” said Dr Kraisorn. “Many complex congenital heart defects can be cured, but they may need routine or special medical care.

“Most children with heart defects run a high risk of contracting bacterial endocarditis. some may need antibiotics before medical or dental procedures that might allow bacteria to enter their bloodstream.

“Regular brushing and flossing as well as visiting a dentist every six months are highly recommended.”

You can help children with congenital heart defects by making a donation to the Fund for new Life. the account details are as follows:

Bank: Thai Military Bank Account name: Wachira Medical College Foundation under the Royal Patronage of HRH Crown Prince Maha Vajiralongkorn for Samitivej’s Fund for new Life (Paediatric Heart) Savings account no: 196-2-08745-6.

Donations can also be made in person at Samitivej Sukhumvit Hospital, Samitivej Srinakarin Hospital and Samitivej Sriracha Hospital.

Latest stories in this category:

Bryce todayThe scariest thing you can tell a pregnant woman is that there’s something wrong with their baby. Hands down. Nothing is worse. But Nicole Rogerson didn’t just learn something was wrong. Doctors said her son should have surgery while he was still inside her belly!

Bryce Rogerson has hypoplastic left heart syndrome (HLHS), a congenital heart defect, and doctors told his mom that they would need to sticking a needle into her stomach, temporarily paralyzing her fetus. then they would move into his heart to open up a hole to help blood flow through his tiny body. Yikes!

Nicole Rogerson is an old friend. But the real reason she agreed to share her story with The Stir this month is because she spends every minute she’s not with her husband and three kids or at work talking about spreading awareness that congenital heart defects are the most common type of major birth defect. in particular, HLHS — a syndrome in which the left side of a child’s heart was underdeveloped — is one of the three most common heart issues a child can be born with, and great strides are being made to keep those kids alive. 

The in utero surgery Bryce underwent debuted at Children’s Hospital of Boston in 2001, and doctors there have done 111 since. Bryce was their 44th. having just turned 6 this week, Bryce is the oldest living survivor of in utero heart surgery.

Set the scene for us Nicole, when did you find our Bryce had HLHS?

At 22 weeks pregnant. it was with a routine ultrasound, and then I went to a pediatric cardiologist at 24 weeks for a fetal echocardiogram.

What did the doctors tell you?

Our first question was what experimental stuff is out there? They said fetal surgery, but they didn’t do it, they suggested we go up to Children’s Hospital in Boston.

Why surgery?

His survival rate, they told us, would go from 20 percent to 40 percent with the surgery. most hypoplas babies will compensate for the problems in the left ventricle by creating an atrial septal defect — a hole in the heart to let blood flow. Bryce didn’t, so that’s what they needed to do, go in and create a hole by putting a balloon in his heart, blowing it up and cutting a hole 2 millimeters wide.

You had to be scared.

It was not a hard decision for us to make. we felt if this kid makes it, we’re going to do everything we can to help him make it. if he didn’t make it, whatever information they got from him would help the next person.

Was there a risk to Bryce or a risk to you with the surgery?

The only risk to Bryce was going into pre-term labor. They do give you drugs to stop that, but they’re going into your uterus. It’s more invasive than an amniocentesis, but not that much difference.

So how did it work?

At 26 1/2 weeks pregnant, they put me under. At the time, his heart was the size of a grape. They gave him a paralytic, a shot in his leg, so he wouldn’t move. it took longer to get him into the right position than it did to do the surgery. They took two and a half hours to get him where they wanted him, but the actual procedure was 15 minutes.

Then what?

Then we waited until I delivered. I went full term. well, 37 1/2 weeks because I had to be  [at Children's Hospital]. I was induced. But if we hadn’t had the fetal surgery, he wouldn’t have made it. The hole they created, by the time he was born, it had already closed itself. His blood couldn’t get oxygen. within 45 minutes of being born, he was brought into the catheterization lab.

Did you ever think this was just too much, it wouldn’t work out?

As a parent, I never, ever, ever did. My gut instinct as a mom, I was never afraid he was going to die. I don’t know if it was the faith in the doctors or what.

Bryce’s fight isn’t over. in the past 6 years, he’s had three open heart surgeries. His lungs have taken the brunt of a heart that can’t properly oxygenate blood. But otherwise, he’s a normal kindergartner who loves the New York Yankees and the Imagination Movers.

You can find out more about congenital heart defects like Bryce’s — including signs and symptoms — at the National Heart Lung and Blood Institute. do you know one of the 8 out of every 1,000 newborns who has one?

Image via Nicole Rogerson