TWO paediatricians from the Universiti Malaya Medical Centre (UMMC) paediatric palliative care unit have joined forces to start a non-profit organisation to provide support for terminally ill children and their families.

Dr Chong Lee Ai and Dr Farah Khalid started the MyStarfish initiative in January last year to provide more holistic, quality palliative care to manage the psychological and spiritual aspect for children with life-limiting and serious illnesses.

MyStarfish takes a patient-centric approach, supporting the child and families going through a difficult time in coping with illness and death.

“We started MyStarfish to provide support beyond medical care and tretment of the illness,” Chong, a paediatric palliative care specialist, told The Malaysian Insight.

“We provide things like play therapy, we do tea parties and even celebrate the birthday of the children to create some sense of normality for them.”

There are currently 51 children in the palliative care unit and some of them are referred to MyStarfish when there is a need for other support outside of direct medical care.

“If we feel that we can support them and the hospital isn’t able to, we will, but we don’t grant wishes, we don’t have a lot of funding. We don’t fund expensive drugs or equipment.”

What is palliative care?

“Palliative care is misunderstood as end-of-life care, when there is no hope. This is a misconception,” Chong said.

“Palliative care is for anyone who has an incurable and serious illness. There is a lot that can be done to manage the symptoms.

“It is all about living well to their best potential, during the time they have. The emphasis is on living not dying,” she said, adding that many times when parents are referred to palliative care units, they are apprehensive as they think the conversation is about death.

The other common misconception is that people often think that palliative care is only about cancer, she said.

“There is a wide variety of illnesses that children can get that need palliative care. It can be cancer, respiratory illness such as cystic fibrosis, neuromuscular diseases, genetic diseases, and even metabolic diseases.”

Even when a child is diagnosed with such illnesses, it doesn’t mean that they will die tomorrow, Chong added.

“They could live very long, till young adulthood. It’s variable, we support and accompany them in this journey.”

MyStarfish does not have a specific set of activities to help children under its care. Instead, it is tailored to the needs of the child and the family.

“Families with children with the same illness do not necessarily need the same amount of support. So, we extend our help depending on what the family needs or what is prescribed by their physician.”

Supporting families

While helping the children is the main focus, supporting the families is equally important to MyStarfish.

Some parents said they feel guilty for spending so much time at the hospital with the sick child that their other children may feel less loved, Chong said.

“We help them to deal with these emotions and overcome them.

“We also make decisions and figure out what is the right decision and how to balance quality of life and suffering.”

There is also anticipatory grief, when they know that their child is going to die, we support them through this period as well.

“Our support will continue through the death of the child and the bereavement period to ensure that the families do not feel abandoned.”

The key to providing good support to any family going through this difficult time is through rapport, she added.

“However, many times by the time they come to us, they only have a week or so left to live. We try to do our best, sometimes it works, sometimes it doesn’t.”

Not everything is about death, as My Starfish also celebrates the milestones in the children’s lives.

“We send them birthday cards, even after death so that the family knows that their child is not forgotten.

“When the results come out we will celebrate that accomplishment, if there is a child sitting for SPM.”

During the lockdown, MyStarfish gave each child RM100 and asked them what they wanted to buy and from where. The organisation then bought the items that were requested and posted them to the recipients.

Parents, she said, have been grateful for the help that MyStarfish has been able to provide.

More resources needed

While MyStarfish is doing the best that it can with limited resources, it is hoping to get more donations so that it can provide more support for the children under its care.

Currently, besides Chong and Farah, there are four volunteers who help support MyStarfish along with a play therapist.

“We would love to hire a full time play therapist, an occupational therapist, social worker and clinical psychologist among others.

“Having more doctors, nurses, rehab and physio specialists would be useful. We tap into the hospital for now, but they are not always available,” Chong said.

Since it was set up in January last year, MyStarfish has collected RM50,000 in donations, mostly from friends, family and acquaintances.

In terms of long-term plans, Chong hopes that MyStarfish can also set up a hospice unit.

“A hospice is like a home and is very comfortable, not sterile like the hospitals.  

“It also doesn’t necessarily mean that the patient is at the end of their life. It is a support that can provide a respite for parents.

“We are trying to see if we can get funding within the hospital, like renting a home nearby so the patients can get to the hospital quickly.” – November 3, 2021.