Why play matters for Austin

Austin is like any other toddler.  He likes playing, laughing and doing things all by himself.  But unlike most other toddlers, Austin has spent the majority of his short life attached to a dialysis machine and lived for many months on a hospital ward rather than at home with his family.

Austin was born with only one partially functioning kidney which, it became quickly apparent, didn’t function well enough to keep him alive. He was tube fed from birth and was put on dialysis at only four weeks old.   At eight months old, having only been home for a short time, Austin also developed sepsis and after his blood pressure dropped dramatically, spent eight very frightening days in a critical condition on the paediatric critical care unit where his parents Laura and James came very close to losing him.

Laura says: “Thinking back to all Austin’s been through in the last few years, its the memory of that time that I find hardest. It’s the first time I’d allowed myself to properly consider the fact that we might lose him but I didn’t want to ask because I was too scared that the answer to my question would be yes. But most of the time it just felt like we were in some kind of strange dream where we had no idea what would come next.  The only option was to get up and get on so that’s what we did.”

Thankfully Austin did recover but the sepsis and low blood pressure had caused a mild brain injury which left him with a weakness down one side, permanently blind in one eye and only partially sighted in the other. His parents were devastated by the news.  The progress Austin had made over the previous months had been wiped away and James and Laura felt like they were back to square one, but now with a little boy with additional needs.

Austin was finally well enough to go home that October and for a while, received his dialysis at home.  But returned to the hospital regularly, now with the additional involvement of the neurology and orthoptics team. But on Christmas Eve, Austin was diagnosed with peritonitis, a sign that the dialysis he was receiving through his peritoneum, wasn’t working.

In the following February Austin started on a new form of dialysis called haemodialysis which saw him return to the hospital three times a week for four hourly sessions.  Laura and James say that the children’s hospital has become a second home to them over the last few years.

James says: “Austin has spent more time with the team on Pelican Ward than he has with his own family and every single person, from cleaner to consultant has played a huge role in his life. The play team have been there from the very start and they’ve invested so much time in him, he sees them as his.  You wouldn’t think it would be easy to keep a baby or toddler entertained in one place for such long periods of time but they’ve developed a routine with him that he knows and loves so his dialysis sessions have never been hard work. The play team also make sure that, despite being in hospital for a lot of his life, Austin gets to enjoy normal events like Christmas and Halloween like any other child by making arts and crafts and dressing up with him.”

Distraction however, is just one aspect of the role play has in Austin’s care as each of the activities is also designed to support Austin’s development. As he’s registered blind, the play team created a box for Austin filled with items designed to stimulate his senses, from crinkly foil blankets and light up wands to rough feeling brushes and materials. Children who are tube fed often develop and aversion to having anything on their hands and near their mouths so part of his sessions include messy play where Austin paints with his hands and feet or plays with different food so that he can experience different textures. By playing at putting food to his mouth with a spoon, Austin is also learning the idea of taste while developing and strengthening his fine and gross motor skills at the same time.

Austin spent 15 months on haemodialysis before reaching a size big enough to be put on the transplant register this Easter.  Just 12 days later, his parents got the call they’d been waiting for and the very next day, Austin received his new kidney.  Much to everyone’s delight, it started working straight away!

Austin is now doing incredibly well and although he still visits the children’s hospital three times a week for blood test, life for the little family is slowly turning in to the ‘normal’ they’ve never had.

Laura says: “Austin’s never had play dates or been to play groups and although I can’t wait to see him do those things, I know he’s had the best possible alternative in the play team. Thanks to their efforts he hasn’t missed out on the essential development aspects and the simple joys of play.  It took a big team of very dedicated, experienced people with lots of different skills to get us where we are now and we’ll never stop being thankful for that.”