While some parents fuss over baby showers or photo shoots for their month-old infant, Jasmine Lee and her husband struggled over whether to have their daughter’s throat operated on.
Not treating it could have killed her.
WHAT DISEASE IS THIS?
Being told your child has a rare disease is something most parents would be unprepared for and it was no different for Jasmine. The 31-year-old housewife says: “When I knew she needed a tracheostomy, I was stunned… Should we do it or not?
“Should we just let her go without even trying to intervene? The consultant had to snap me out (of my daze) and ask if I had heard her.”
Jasmine says that even as Sarah was being wheeled into the operating theatre at KK Women’s and Children’s Hospital, her husband, a 33-year-old analyst, was still hoping there would be a sign to show that their daughter would not need the surgery.
Sarah was born with a genetic problem that doctors cannot quite put a finger on. According to a lab report, there is some missing information in one of her genes. But it could not explain the disabilities she was born with.
She turns four in July, but is unable to sit up on her own. She has moderate hearing loss, is short-sighted and has stiff joints.
Being unable to swallow means she requires frequent suctioning to make sure her airways are not blocked. Whenever there is a mucus or saliva build-up, Jasmine will insert a tube into Sarah’s throat to pump out the secretions with the help of a suction machine. Last year, Sarah went through another major operation to insert a feeding tube into her stomach.
The slew of unexplained medical problems was initially agonising for her parents and they struggled with the uncertainty.
SHE BLAMED HERSELF
Jasmine, who also has a five-year-old son, initially blamed herself for her daughter’s condition. She says: “Was it I who caused her to be in such a state? Was it because I didn’t provide her with enough nutrients when she was inside my womb?
“Was it because I did something during my pregnancy that caused her to suffer?”
The former accounts executive quit her job to devote her attention to Sarah. She admits that sometimes, she would tear just looking at her daughter. It was a steep learning curve, figuring out how to see to Sarah’s medical needs.
It took a year before the couple came to terms with their daughter’s condition. The uncertainty of her condition no longer bothers them and they are mentally prepared for the worst case scenario – Sarah dying before them. “I won’t say if it’s for the better or worse if that happens. I’ll leave it in God’s plans,” Jasmine says quietly as she looks over at Sarah to check on her secretions.
TEARS OF JOY
She no longer cries about her daughter, she adds. When she does, they are tears of joy at the little milestones her daughter hits — like the time Sarah was able to hold her neck up for 10 seconds after two years of therapy.
Whenever they go out, they have to take a suction machine with them. This is about the size of a tote bag and it often draws stares from strangers. But instead of being offended, Jasmine is now able to laugh about it. “Just this Chinese New Year, we were at a food centre when this auntie walked past, turned back, then shook her head… I find that amusing,” she says.
When they moved into their four-room flat in Bukit Panjang last year, the mother of two posted about Sarah’s condition on a residents’ group Facebook page after encountering many curious stares from residents. “We are fortunate that the residents in our estate are actually very gracious and nice people. We always exchange smiles,” Jasmine says.
And she is quick to debunk the myth that special needs parents are very “poor thing”. The family of four went on a family holiday to Bangkok last year. “Actually, we are not sad people. Parents of special needs kids are the most positive people,” she says with a grin.
A version of this article first appeared in The New Paper.
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