Singapore — When 11-year-old Phua Wenxin first learnt of her younger brother’s incurable disease in 2014, she accepted the bad news without fuss.

But as her brother’s condition ­deteriorated over the following months, Wenxin ­began experiencing unexplained spells of nausea, chest pain and breathing difficulties in the morning.

“On the surface, (Wenxin) looked like her usual happy self, but it got ­increasingly hard to get her ready for school. We tried to ease her discomfort, by using medicated oil and ­ensuring she ate her breakfast — nothing worked,” said her father, Phua Wee Seng, 42, a business owner.

Mr Phua sought professional support for Wenxin when he could not provide an answer to her poignant question: Why do children die?

“She had so many questions ­after seeing Wenjie hooked up to machines and tubes in the hospital following his treatment of bone marrow transplant … Honestly, I couldn’t answer her questions as I wasn’t in the right frame of mind myself,” said Mr Phua.

Wenjie, eight, suffers from X-linked adrenoleukodystrophy, a rare and life-threatening genetic disorder that has ravaged most of his cognitive and physical functions, leaving him wholly dependent on others to care for him.

Mr Phua approached HCA Hospice Care, which is providing palliative care to Wenjie under its paediatric palliative care service, Star Pals (paediatric advanced life support), and its psychosocial services team roped in an art therapist to support Wenxin.

Through art therapy sessions, the therapist discovered that Wenjie’s illness had taken an emotional toll on Wenxin.

“During the past few sessions, Wenxin told the therapist that she feels sorry for bickering with her di di (‘younger brother’ in Mandarin) in the past and also misses the times when they used to play together.

"She was grieving in her own way but didn’t know how to express it,” said Mr Phua.

SUPPORT SERVICES FOR CHILDREN

Amid a crisis such as a life-threatening illness or death, a child’s emotional needs are often overlooked by adults struggling to cope with their own emotions.

However, children, like adults, require ample support to help them make sense of grief and loss, experts told TODAY.

Recognising this, organisations here are providing psychosocial support and resources to equip the young with skills to cope with death or illness in the family.

This weekend, HCA Hospice Care will launch a children’s grief management storybook, titled P.S. Grandpa, I Love You, at the Asian Festival of Children’s Content 2016.

Penned by a caregiver whose late ­father was the charity’s patient, the storybook includes a resource and ­activities guide for parents.

Besides caring for children with life-threatening or life-limiting conditions, the home hospice provider each year also supports between 20 and 30 children such as Wenxin, who have difficulty coping with their loved one’s illness or death.

“Serious illness and death are never easy topics for discussion, and adults often struggle to find the right words to talk about it with children and youths.

"This storybook is suitable for children of any age group, and is also a tool that adults may use to help answer some difficult questions in a simple, easy-to-­understand manner,” HCA Hospice Care said.

A grief management guidebook ­titled Living with Grief, by Institute of Mental Health (IMH) experts, is also available at IMH’s Web shop for parents and other adults who wish to help a child heal and move on from a loss.

Some organisations have special support programmes to help children cope.

Since its launch in 2013, about 35 children aged seven to 12 have ­attended the National University Hospital’s (NUH) Kids Connect programme, which supports the emotional well-being of children whose parents or main caregivers are diagnosed with cancer, said senior medical social worker Yvonne Cai with NUH.

The programme runs twice a year during school holidays, and aims to help these children make sense of their feelings, as well as build resilience and skills to manage their fears through activities such as art and storytelling.

When required, NUH’s medical ­social workers also educate and coach parents on supporting their child in their grief, and refer them to community support services, said Ms Cai.

At the Singapore Cancer Society (SCS), the Help the Children and Youth Programme — comprising a free home tuition service and activities such as camps and family engagement programmes — is available to children whose family members are affected by cancer.

Initiated by the society in 2010, and supported by the Singtel Touching Lives Fund, the programme benefited 80 children and youths last year.

NOT TOO YOUNG TO GRIEVE

Experts say children are not too young to understand the concept of death and dying.

Dr Bernardine Woo, senior consultant at IMH’s Department of Child and Adolescent Psychiatry, said children are capable of grieving and usually have this awareness from around the age of six.

Even younger children are able to sense changes in their environment.

“For instance, ­babies do not understand the meaning of death, but are able to feel the loss, and will show their distress when separated from a significant caregiver by crying, searching for the person who died, or exhibiting a change in sleeping, eating and toilet habits,” said Dr Woo, co-author of Living With Grief.

That is why it is important for adults to address their children’s emotions, even if they appear “fine” outwardly, said SCS senior counsellor Victoria Chan.

“It is important to note that children and adults grieve very differently.

"While adults tend to grieve more intensely over a period of time, children grieve intermittently.

"Attending to their grief could go a long way towards contributing to better emotional well-being as they grow up,” she added.

Supporting a child in the grieving process also helps address any misconceptions or feelings of guilt and insecurity.

“When left out of the process, they may feel they are the cause of the problem. For example, Daddy is sick because they have been naughty. They also worry about who will take care of them,” HCA Hospice Care said.

For Wenxin, professional support from the art therapist helped her make sense of her emotions and the situation at home.

Their mother Yeo Kheng Hui, 42, an IT manager, said: “Wenxin stopped complaining about her physical discomfort after her art therapy sessions.

"Now, she’s embracing every day she has with her younger brother. She likes to kiss and hold Wenjie’s hand whenever she comes home from school.”

Although Wenxin knows that Wenjie’s condition is incurable, Ms Yeo harbours hope that he will recover.

Wenxin said: “Although my didi (younger brother) doesn’t respond when I talk to him, I still tell him that I love him and list down the places we can go together when he gets well.

"My greatest wish is for him to recover and that my family members will not experience any more diseases so we can be a happy family.”