An Extraordinary Girl Living with Trisomy 18

 

Ms Tham Yin May shares her journey and emotions of bringing up and nurturing a severely handicapped child with Trisomy 18 syndrome for the past 10 years. It is a testimony of love, courage and joy triumphing over doubt, anxiety, fear and human frailty. It is worthwhile to read the chronicles her life with Vera in a blog at http://mylittlevera.blogspot.sg.

 

        

The Straits Times featured her on Sunday, September 2, 2018 in an article below:

 

Her daughter’s every birthday is a triumph

                           By Wong Kim Hoh

 

Doctors said her newborn would live only for two weeks, but this mum never gave up.

 

When Ms Tham Yin May gave birth to her first child a decade ago, someone she knew said: "The good thing is, she won't live for long".

That insensitive comment stunned the former advertising creative director, intensifying the grief that was already overwhelming her.

Her daughter Vera was born with Trisomy 18, a genetic disorder caused by an error in cell division. Babies born with the condition have three copies of Chromosome 18 instead of the normal pair, and suffer from a plethora of mental and physical disabilities.

Vera was born, among other things, with a lateral cleft palate and defects of the brain, heart, stomach, airway, spine, ears, fingers and feet. Doctors initially told Ms Tham and her husband that Vera might not survive beyond two weeks.

"When asked what the best case scenario was, they said 95 per cent of such babies do not make it past a year," Ms Tham recalls. "They told us to take her home and enjoy our time with her."

It took her a long time to grapple with the shock.

"I was breaking down and crying a lot. My husband said, `There will be time to cry when she's gone'," says the 43-year-old.

What he said jolted her.

"So we decided to take it one day at a time and get her to the one-year mark."

One year passed. Then two, three and four. In February this year, Vera's family celebrated her 10th birthday.

The journey has been arduous and perilous. Two years ago, they almost lost her to a debilitating lung infection but she clawed her way back.

"She has surpassed all expectations. Every year now is a bonus; we cherish every moment with her," says Ms Tham, cradling her daughter in her arms at her apartment in the east.

Vera wears pink-framed glasses and has a shock of black hair. She cannot talk, walk or swallow, and has to be fed through an opening in her stomach. She cannot see, hear or breathe well either. She can only move her left hand, often reaching out for a reassuring touch from her mother.

Her eyes, however, dart with liveliness, and a hint of a smile hovers about her lips each time Ms Tham talks to her loudly but affectionately.

"She sees only with her left eye and has severe lao hua," her mother says, using the Mandarin term for presbyopia. "She also hears only on one side. She knows someone is here but she doesn't know what we are talking about."

Ms Tham chose the name Vera after learning that the baby she was carrying was likely to suffer from multiple complications. "Vera comes from the (Latin) word `verus' which means true. And she has shown me what is true in life."

Before her daughter's arrival, Ms Tham, the elder of two children of a lecturer and a nurse, sailed through life. "I did well in my studies and led a sheltered life with no upheavals and no trials," says the former student of Haig Girls' and Dunman High.

She has a great love for music, one which spurred her to enter, and win, many singing and songwriting competitions.

When asked what she likes to sing, she melodiously belts out the chorus from an Abba classic: "So I say, thank you for the music, for giving it to me."

After completing her A levels at Temasek Junior College, she studied communications at Nanyang Technological University.

"I knew I was going to go into advertising when I was in university. I was also sure I was going to get married, have two kids and have a regular life because I didn't deviate from what I was supposed to do," she says.

Indeed, until she was 32, life unfolded like a charm.

Immediately after graduating in 1999, she landed a job as a copywriter at top agency Batey Ads, where she found herself working on big accounts including Singapore Airlines and United Overseas Bank.

Barely two years later, she moved to another international agency where she impressively beefed up her resume by working on campaigns for DHL and Nike.

"It was rewarding. If you're good, you win awards, which translates into monetary rewards," says Ms Tham who has picked up several advertising prizes. "What really drove me were the ideas. Everyday I got to think of ideas. I love the pressure."

Her personal life also went swimmingly. Her husband Ian Lau, whom she married at 30, works as a senior engineer in an automotive company.

"In my second year of marriage, I told myself, life was almost too good to be true. I never had anyone die on me, I never had to deal with hardship. I married the man of my dreams, we had our HDB flat in Punggol, we were financially sound.

"I did a lot of self-reflection and I had the feeling that something, a challenge, was on the horizon."

Ms Tham had no idea how prescient she would prove to be.

The following year, she got pregnant with Vera. All seemed well when she went for her first test for genetic disorders during her first trimester.

"She was quite small, which was bit of a concern. But the test indicated a low risk of Trisomy 18."

Looking tenderly at Vera, she says: "The way I see it, she hid her diagnosis from us. She didn't want tell us; she wants to be here."

The bomb dropped when Ms Tham went for her second test in her fifth month of pregnancy. She and her husband were later told there was a high risk that their baby would be born with disabilities.

"That was the point when the pretty picture of my life was not perfect after all."

Although doctors told Ms Tham and her husband not to imagine the worst, the next few months we harrowing.

She was advised to have a caesarean birth for several reasons. A Trisomy 18 error occurs in one out of every 2,500 pregnancies. Not only is the risk of stillbirth in the second and third trimesters high, but studies have also shown that only 50 per cent of such babies carried to term will be born alive.

Unlike most babies, Vera did not cry when she emerged from her mother's womb and was whisked the intensive care unit.

         "I only got to hug her on the second day. She was all tubed-up, hooked up to different machines and monitors," Ms Tham says.

On the 12th day, doctors told her and her husband to round up their loved ones and family members. They confirmed the baby had Trisomy 18 and passed the couple a list of 150 complications associated with the condition. Many like Vera, they added, did not live beyond two weeks.

"Giving birth is supposed to be a happy time but we were talking about death. It became the worst time of my life," says Ms Tham as she draws her daughter close to her, her voice breaking and her eyes tearing for the first time during the interview.

Thankfully, her emotionally sturdier husband managed to coax her to face reality. An aunt, who has a disabled child, was a great source of comfort and encouragement. Loved ones also provided a solid network of support.

Ms Tham and her husband buckled down to find out as much as they could about Trisomy 18. Mr Lau took nine months off work to look after Vera while she went back to her job. "Work was a good refuge; it helped me get a hold of myself."

Learning to care for Vera was a steep learning curve.

"In the first few years, we were trying to figure out how to manage her fits as well as stomach and breathing issues. She was averaging one long period of hospitalisation every year," Ms Tham says. "But once her breathing issues were sorted and a feeding tube was inserted, she became a much happier baby and actually thrived."

The child learnt to sit and even slide across the floor on her tummy using her arms.

"She was lots of joy. She would show that she knew we were trying to connect with her. I'll never stop communicating with her like a normal child even if she doesn't understand me. I'm her mummy even if she doesn't know I'm her mummy. Ours is a bond beyond words," says Ms Tham, who chronicles her life with Vera in a blog at http://mylittlevera.blogspot.sg.

Although there was a lot of trepi­dation, her husband convinced her to try for another child. Daen, now eight, came along two years after Vera. The Primary 2 pupil is close to his sister and has even learnt how to feed her water through her feed­ing tube.

Sadly, much of the developmen­tal progress Vera made - including moving her legs vigorously and bab­bling - was lost two years ago when she caught respiratory syncytial virus, a potentially fatal respiratory infection that compromises the im­mune system and leads to breath­ing difficulties.

The virus made Vera's lungs bleed and debilitated her so much that doctors had to bring her back from the brink of death twice.

         "The doctor sat us down and asked us if we wanted to save her the next time it happened. My husband and I have decided we are not going to be heroic to keep her. We want to let her decide. And she decided she wanted to stay," says Ms Tham, who recently quit her job as an associate creative director to devote more time to Vera.

"She may have lost a lot of the progress she made, but she can still respond to us with a lot of love and she is still very much here. A new Vera is better than no Vera," she says of her daughter who attends the Cerebral Palsy Alliance Singapore School five days a week.

Caring for Vera has taken Ms Tham back to music. Over the last few years, she has written several songs for her daughter.

"The songs were painful to write. I'd cry a lot while writing them. But they were therapeutic. Vera inspired these songs to help me heal."

For the last eight months, Ms Tham has been beavering away to get the songs released.

"I believe Vera hung on for a purpose. Hopefully, these songs about her journey will inspire others. I want to be her voice. I want people to know that children like Vera love and deserve love too."

One of the tracks, Love Is Not Rare, accompanied by a music video put together by some good friends, has just been released on two of Ms Tham's websites - www.yinmay.com

and www.yinmay.bandcamp.com

Most of the proceeds from the song will be channelled to the Rare Disorders Society Singapore, through which she has met other inspiring families with special children.

Ms Tham says: "I've realised life happens in opposites. The worst diagnosis can be the best outcome. In her weakness, Vera has shown so much strength. In her silence, she speaks volumes of her love.

"She has only one arm that's active, but she uses it daily to hug us. With each bonus day of her life, she reminds me to live purposefully."

kimhoh@sph.com.sg