Health Tips › Neurosurgeon

Daddy’s girl smiles again

A brain tumour turned her world upside down, but with surgery, rehabilitation and the support of caring nurses and family, 2-year old Atikah is on the road to recovery

Dayangku Nur Atikah Najibah binti Pengiran Haji Bahrin’s (Atikah) parents first suspected that there was something wrong with their baby when her neck became a bit stiff and her head started tilting to the right.

The once-active baby had also turned into a moody child who would cry non-stop at times.

CT and MRI scans subsequently confirmed that their daughter had a tumour in her brain, with the tumour cells scattered in several locations. The water pressure in her brain was also higher than normal, a condition which could lead to brain damage.

An operation was done in Brunei and this confirmed that Atikah had ependymoma. Her doctor in Brunei recommended either chemotherapy or further brain surgery in a Singapore hospital as the next course of action.

In Singapore, a pediatric oncologist recommended brain surgery after he found that the tumour had spread to both the left and right sides of her neck, as well as residual tumour in the brain. After consulting with senior consultant neurosurgeon Dr Timothy Lee, the family agreed to proceed with surgery at Mount Alvernia Hospital.

Within a month, Atikah was operated on four times. Two of the operations were surgical excisions to remove all the cancer cells. The first took about 16 hours and the second took about 8 hours. The other two were shunt operations to drain excessive water from her brain in order to reduce pressure there. Dr Lee described Atikah’s case as “challenging” but everything went smoothly and the next phase was post-operative recuperation.
 
ROAD TO RECOVERY
 
All in all, Atikah spent nearly four months recuperating at Mount Alvernia, under the watchful eyes of the nurses at the Critical Care Unit (CCU), and later on, at the Children’s ward.

Over time, she grew more and more familiar with the hospital staff, and they to her.
 
“In the beginning, she didn’t like the nurses to touch her. She would just ignore you,” said Ms Naw Kre Thaw, a staff nurse at the CCU who remembers Atikah well.

But the patient nurses persisted to win her over, singing nursery rhymes and making small talk with Atikah as they tended to her. To brighten up her environment, they also decorated her bed with stuffed toys and cartoon stickers. The CCU permanent night nurse would even sit and play with Atikah after giving her medication.

Before long, Atikah began responding to their voices and touch and could recognise all the nurses who walked in to her room. It was a giant leap forward for the little girl who would only respond to her father before, although her preference for Daddy remained. “She was a real Daddy’s girl. When he was around, she didn’t care about others,” said Nurse Kre.

Despite her tender age, Atikah struck the nurses as a “mature” patient who hardly ever threw tantrums. According to Nurse Kre, she would only cry if her pampers were wet or if she was running a fever.

And the affable child could find reason to smile even through her pain. One trick the nurses discovered was singing and acting out her favourite children’s nursery rhyme, If you are happy and you know it .., said Ms Lillibeth Corral Yaco, a senior staff nurse at CCU.

“Whenever she was asked to give a ‘Hi 5’, she would give it to you even when she was very ill and on a ventilator,” shared Nurse Yaco.

PLAY THERAPY

As part of her recovery process, Atikah underwent chest physiotherapy, occupational therapy and speech therapy.

There were suction sessions to extract mucus from her windpipe since she could not cough out phlegm on her own.

Atikah also had two months of occupational therapy, or due to her age, “play therapy” would be a better description.

When occupational therapist Koh Siew Van first saw Atikah, she was “unresponsive to command and was not able to have eye contact”.

Initially, her therapy sessions involved a lot of sensory stimulation using sound and bright coloured objects. The therapist then worked on her motor skills as well as her sitting balance to improve her trunk control.

By the time Atikah had completed her therapy, “she was able to sit independently and walk with minimum support", Ms Koh said.

Atikah celebrated her second birthday on 27 March at Mount Alvernia, with a party hosted by the nurses and some goodies from Dr Lee. It was attended by her parents and several hospital staff. The birthday girl was, by then, able to taste a little of her favourite chocolate and ice-cream.

Shortly before Atikah was discharged, Dr Lee had some good news for her parents: The brain scans done immediately after surgery and three months later showed that all her tumour cells were gone.

“She should be able to grow up normally,” Dr Lee said.
 
Like other cancer patients, Atikah, who has regained her vision, will have to remain under medical supervision for the next five years before she can be given a clean bill of health.

For now, the little girl’s transformation, from a seriously-ill child who could not even sit straight to one who can walk once again with minimum support, is a cause for celebration not only for her family but also everyone who has come to know Atikah and has been touched by her indomitable spirit.

A Place for Quiet Reflection & Prayer

For Atikah’s parents, the attention showered on their daughter was not the only thing that caught their attention at Mount Alvernia. They were also pleasantly surprised to find that the Catholic hospital had a “Quiet Room”, where they could perform daily prayers as a Muslim.

TUMOUR FACTS

Q: What is ependydoma?
 
It is a rare form of brain tumour that arises from the ependyma, a tissue in the central nervous system, which comprises the brain and spinal cord. It can occur in both children (usually in the brain) and adults (often in the spine).

According to Dr Timothy Lee, he sees only one or two cases a year, and they are always children.
 
Q:  What causes it?
There is no known cause and it has nothing to do with a person’s genes or his lifestyle.

Q:  Are there any symptoms?
Frequent headaches; persistent vomiting for more than one week; head tilted towards the right; loss of balance or trouble walking; and irritability.

 Q: Once the tumour is removed, will it return?
There’s about a 10-20 per cent chance of the tumour returning, said Dr Lee.