Raising a special needs child is among the toughest battles for parents. Just ask Singapore mum Tham Yin May, whose daughter Vera has 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.
Someone she knew even 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.
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 Yin May 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, Yin May 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 Yin May, cradling her daughter in her arms.
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 Yin May 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.”
Yin May 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.”
Unlike most babies, Vera did not cry when she emerged from her mother’s womb and was whisked to 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,” Yin May 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.
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,” Yin May 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 Yin May, who chronicles her life with Vera in a blog.
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.
“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 Yin May back to her love of music. Over the last few years, she has written several songs for her daughter. She says, “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 Yin May’s website.
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.
Yin May 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.”
A version of this article appeared in The Straits Times.