“My little girl has a rare brain tumour”

Karen Lai’s dreams for her daughter were dashed by a rare brain tumour.

Parents-“My-little-girl-has-a-rare-brain-tumour”

“At age 2, Bianca was a very sweet, bright and helpful child — I called her ‘mummy ’s little helper’. She’d ‘mother’ Bijan, her elder brother, whom she dotes on. Both my husband Gary and I thought that she was mature beyond her age and knew she would go places — we pinned our hopes on her. In fact, it was because she was such an angel that we decided to have a third child, Bidelia.

          “When Bianca was 4, she began to complain of headaches, but we brushed it aside, thinking she wanted attention.

          “Soon, her complaints increased and she began throwing up. Worried, I took her to a GP, who prescribed tummy-ache medication — but her symptoms persisted.

          “When Bidelia next visited the paediatrician, I took Bianca with me. After checking her eyes, he suggested that we consult a neurologist. In the days leading up to her appointment, she suffered severe vomiting. We also noticed that she had started bumping into things and knocking stuff over.

          “After examining her, the neurologist suggested that we return the following day for a CT scan. On 23 March 2011, Bianca was sedated at the hospital before her scan. Later, an entourage of neurosurgeons told us that Bianca had an egg-sized tumour that required immediate surgery. The ‘good’ news, they said, was that her body had been compensating well for its presence.

          “About a week later, the doctors finally told us that Bianca had craniopharyngioma — a rare, benign brain tumour that occurs in the critical area of the pituitary gland (a pea-sized gland that controls other hormone glands, such as the thyroid), hypothalamus (responsible for certain metabolic processes) and optic chiasm (spot where the optic nerves cross). Patients suffer from hormonal deficiencies, obesity, as well as vision and other problems, and the condition is potentially lifelong. It also explained why Bianca had been bumping into things — she had lost her peripheral vision.

          “The surgeons drained excess fluid from her brain before removing the tumour. Bianca was in the ICU for a month as they had to stabilise her condition and also find the right balance of medications, so that she could lead a normal life.

          “Post-surgery, Bianca had two external shunts (holes) inserted in her head to drain fluids, which was replaced by a tube leading to her stomach. When she finally left the ICU on 9 April 2011, she had been treated for an enlarged liver, a blood clot in her thigh and a urine infection. Her headaches returned about a month later. She underwent Ommaya reservoir shunt surgery (a tube fixed on the head to deliver medications to the brain) that August.

          “Unfortunately, the tumour came back a year later. This time, after seeking various medical opinions, we opted for invasive surgery, just like the first time — as opposed to radiation, as that would’ve killed her good brain cells along with the tumour.

          “Following her second surgery, Bianca didn’t wake up, and doctors didn’t know why. While she was still under sedation, she suffered a stroke in front of me. On waking up several days later, her right side was paralysed.

          “‘Catatonic’ is the only word I can use to describe her state then. She underwent intensive physiotherapy and had to re-learn motor skills. To draw her out of her catatonic state, we even brought in art and play therapists. Thankfully, after six months of intensive therapy, you couldn’t tell she'd had a stroke.

          “Today, Bianca is completely different from the child she was at 2. Though she’s not autistic, she hits people of authority, is perpetually hungry as her hunger centre is destroyed, has vocal and physical ticks, throws tantrums, and also paces up and down.

          “Because her brain is now wired differently from a regular person, she comprehends things differently from us. While our brains work on broadband speed, hers is like dial-up speed. For instance, we would talk about something and she would only respond several minutes later.

          “As her fight-or-flight responses have been affected, she’ll run to a quiet corner, but won’t know why. Because my child has meltdowns, I'm hesitant to bring her out as people can be judgemental.

          “Bianca now goes to a special-needs school, as regular schools can’t cope with her behaviour. Thankfully, her doctors’ visits have dropped from once every three months, to once a year.

          “Because she’s a different girl now, I mourn the loss of the daughter she used to be. However, I celebrate the fact that she’s still with us.”

Karen Lai, who is in her late 30s, is married to Gary, 48, and their daughters Bidelia, 4, Bianca, 8, and son Bijan, 10.

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Photo: ING Images