Taking it one heartbeat at a time

PHOTO: Taking it one heartbeat at a time

SINGAPORE - Like a normal two-year-old, Belle Tay is exploring her home curiously when an orange piques her interest.

She pesters grandma to show her what is inside that orange ball, chuckling as the fruit is peeled and its flesh revealed.

But Belle cannot eat the orange because she doesn't know how to. She hasn't learnt how to swallow, the indirect result of a birth defect.

Her mother says: "She has been tube-fed since she was a baby, so tube-feeding to her is normal, while eating through the mouth is not."

Belle was born with a combination of three heart conditions - transposition of the great arteries with pulmonary stenosis and ventricular septal defect.

This means that instead of her heart pumping life-giving oxygen-rich blood to the rest of her body, it pumped oxygen-depleted blood instead. Also, her pulmonary artery was narrow on one end and she had a hole in her heart.

The combination forms one of the rarest congenital heart problems in the world - only about three babies in 10,000 births are diagnosed with it.

Amazingly, the little fighter survived on her own for more than two months after her birth so her condition went undetected.

It was the hole in her heart that served as a blessing in disguise.

"Luckily, the hole didn't close. If it had closed, she wouldn't be here today," says her mother, who requested we identify her with only part of her Chinese name as she has been embroiled in a messy divorce.

Miss Zhen, 27, an administrative assistant, recalls sadly how Belle had a bluish tint to her skin, lips and fingernails. She was also breathing rapidly, sweating on the head and vomiting after being discharged.

She says: "Being an inexperienced mum, I didn't pay much attention to (the symptoms) since the paediatrician claimed she was healthy upon discharge."

Devastated

When Belle was one month old and taken for a routine vaccination, a polyclinic doctor picked up a heart murmur and referred her to the KK Women's and Children's Hospital.

Her condition was detected when she was almost three months old and Belle was warded immediately.

Miss Zhen was devastated.

"My world came crashing down. All I could think of was, why must it be my girl, why?"

Numerous questions swirled in her head.

"If her condition was so serious, why wasn't it detected when she was still in my tummy, or when she was just born?"

By then, Belle's oxygen saturation level had dropped to 30 per cent. For a normal person, the oxygen saturation level is 98 to 100 per cent.

Within a year, she underwent three separate operations to correct her condition.

These included the Nikaidoh Procedure, a complicated nine-hour operation. Belle is believed to be the first patient in Singapore to have undergone the operation.

Looking at the playful toddler with her sweet smile today, it is hard to imagine the trauma she had to go through - she almost died three times.

To make things worse, while Miss Zhen was caring for Belle in the hospital, she and her ex-husband fell out.

She says he couldn't accept the fact that their daughter has such a condition and started drinking at bars, where he met other women.

Miss Zhen says: "Even though my girl was lying in the ICU, he had the mood to go for a holiday in China for two weeks.

"And during those two weeks, there weren't any SMSes or calls to ask about us."

That was the last straw and she asked for a divorce.

"That was the time I needed him most but he was holidaying in China," she says. "Who can stand that?"

The couple officially divorced in January last year, when Belle was just one year and four months old, after her third operation, when she had a pacemaker and shunt placed in her heart.

Miss Zhen recalls those dark days: "I kept crying and crying. I couldn't even change diapers for Belle."

One day, she snapped out of the spiralling pattern. She says: "One day, Belle was having fever of 39 deg C. I suddenly realised that if I don't look after her, who will?"

The road to recovery for Belle has been long, but Miss Zhen never gave up.

Before Belle could be discharged from the hospital, Miss Zhen had to learn home care - like how to insert the feeding tube through the nose, check whether the tube is in the stomach and remove phlegm through suction.

She quips: "With what I've learnt, I can be a part-time nurse."

With her mother's tender loving care, Belle has progressed a lot from her sickly, blue and breathless self just months ago.

But her condition has affected her growth. She lags behind her peers and goes to a special needs school where she is learning how to eat.

While her peers speak in sentences, run and jump, Belle is still babbling and toddles around while holding onto furniture.

Miss Zhen has exhausted her and her ex-husband's Medisave accounts to pay Belle's medical bills, which came up to more than $50,000.

Although she receives maintenance payments and claims half of Belle's medical expenses from her husband, the balance takes a chunk out of her less than $2,000 monthly salary as a part-time administrative assistant.

Consumables such as disposable syringes can cost about $1,000 a month.

On top of that, Miss Zhen gives money to her parents.

Belle will be going for yet another operation in June, to change her pacemaker as it is running out of batteries and Miss Zhen plans to ask charity organisations for help to pay the medical bills.

She is unsure how Belle's future will pan out, but for now, she is training Belle to eat through her mouth.

"With the feeding tube jutting out of her nose, no nursery would take her in. They are afraid other kids would pull her tube out of curiosity," she says.

"I hope she can grow like a normal child and not be the odd one out."

Rare procedure performed on miracle baby

There have only been about 30 Nikaidoh Procedures done wo-rldwide, says Dr Sriram Shankar.

He is a consultant cardiothoracic and vascular surgeon in private practice, and a visiting consultant at the National University Hospital (NUH).

It is Dr Shankar's team who gave Belle Tay a new shot at life.

Belle was born with a combination of congenital heart disorders - transposition of the great arteries (TGA), pulmonary stenosis, and ventricular septal defect.

TGA, where the two major arteries from the heart switch places during development in the womb, affects three to five babies in 10,000 births.

Though it was Dr Shankar's first time performing the surgery in his almost 20 years of practice, his team of doctors felt that it was the best option for her, he tells The New Paper on Sunday.

He led a team of six specialists who operated on her at NUH.

According to the Health Ministry, 22 babies here had TGA in 2009, 15 in 2010 and 10 in 2011.

It is even rarer for babies to have TGA with pulmonary artery stenosis, says Dr Winn Maung Maung Aye, an assistant professor and consultant cardiothoracic surgeon at NUH, who was part of the team that treated Belle.

Dr Shankar says Belle has a long road ahead and a lot of growing up to catch up on.

"Hopefully she grows. She had been blue for the longest time and it has affected her development.

"We have to wait and see. She should be able to lead a fairly active life."

chaihyn@sph.com.sg

This article was published on April 20 in The New Paper.

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