Looking up at the ceiling during tough procedures, Siddiqah and Azraqee are reminded of three powerful mantras:“I am strong, I am fantastic, I am brave”.
The siblings, originally from Malaysia, embody these powerful words, which they developed with the support of the Child Life and Music Therapy Team at Sydney Children’s Hospital, Randwick (SCH).
Siddiqah, 11 years old and her brother Azraqee, eight years old, live with a connective tissue disorder called dystrophic epidermolysis bullosa (DEB), which causes pain likened to that of third-degree burns. In 2017, needing access to better medical care for their condition, they travelled to Australia on a medical visa.
For children living with DEB, friction from even the simplest things such as shoes, clothes, or toilet paper which is too rough, causes the skin to blister and the development of wounds. They are often referred to as butterfly children because their skin is as fragile and delicate as a butterfly’s wings.
Siddiqah and Azraqee’s condition is severe and causes blisters to grow in the middle layer of their skin and inside their bodies, in places like their mouths, esophagus, and eyes. When the blisters heal, they cause painful scarring.
“I still remember the first time these beautiful siblings came to the EB clinic. They were both quiet and shy, but it wasn’t long before their faces lit up with enthusiasm as I got out some craft materials,” said Janet Burke, Manager Child Life and Music Therapy at SCH.
“I was struck by their enormous gratitude for any activity I provided as well as the sheer tenacity of these kids whose fingers were half the size of those of other kids – and partly fused together.”
Since arriving in Australia six-and-half years ago, Siddiqah and Azraqee have visited SCH hundreds of times collectively. They require dressings and bandages each time their skin blisters, daily dressing changes and for new blisters to be lanced (drained) – a process taking over an hour each day. They also need to take regular baths with bleach to help keep infection out of their wounds.
“Over the years we’ve worked together I have supported Azraqee and Siddiqah during more painful procedures than I can easily count,” said Janet.
“I’ve created posters of the mantras we developed together, which acts as a visual cue to help calm them. The courage and the bravery they display every day of their lives is second to none.”
In the last two years Siddiqah has had hand surgery twice to unfuse her fingers and give her greater function in her hand. Her hands required a full change of surgical dressings each week after these surgeries, and it was during this time she met every member of SCH’s Child Life Therapy Team.
“Her first dressing change took seven hours. During this arduous and painful procedure, Heidi from Music Therapy and I sang a breathing song we often sing on our broadcast playgroup to help distract Siddiqah and lift her mood,” Janet said.
“Heidi then created a song from Siddiqah’s affirmation. Siddiqah loved it so much that Heidi recorded her a copy to keep permanently, reminding her of her strength and helping to empower her.”
Child Life and Music Therapy plays a huge role in reducing stress and anxiety associated with medical treatment and procedures, not just for children but also their families.
“Child Life and Music Therapy doesn't just help with Siddiqah and Azraqee, it helps me too. It hasn’t been easy, the routine at home and being at the hospital can be quite scary but Janet and the team soften the experience,” Kida, Siddiqah and Azraqee’s mum, said.
Recently the Child Life and Music Therapy team at SCH have also supported Siddiqah through a secondary neurological condition requiring regular admissions, infusions, cannulation and ultrasounds under general anaesthetic – all of which can be extremely daunting.
“Supporting Siddiqah with techniques such as visualisations, tapping, breathing and tracking games has helped her cope with these procedures,” Janet said.
“I have also been encouraging her to vocalise her needs – including expressing her fears and pain – and to engage in strategies to minimise trauma including moving her legs during procedures so she doesn’t have a sense of being immobilised.”
Siddiqah and Azraqee’s Mum, Kida, says she doesn’t know where their family would be without the the Child Life and Music Therapy team.
“Right now, Siddiqah looks forward to being at the hospital just to see Janet and doesn’t think so much about the procedures she needs to have. It’s significantly changed her perspective and all we have to do if Janet is not there, is think “What would Janet do?”
For Siddiqah, Azraqee and Ida, the Child Life and Music Therapy team have become like extended members of the family.
“We don't have any family in this country at the moment but Janet and the team are just like family and thanks to their support, coming to the hospital now feels like coming home.”
Child Life Therapy and Music Therapy at Sydney Children’s Hospital, Randwick, The Children’s Hospital at Westmead and Bear Cottage is proudly supported by Sydney Children's Hospitals Foundation, helping to make this invaluable care and support for children like Siddiqah and Azraqee possible.