After three years of being confined to a full-body cast, Monique Jacobs is finally able to scratch her skin, jump in the swimming pool, and have a proper shower.
Monique, 7, was diagnosed with congenital lobar emphysema at just two days old, and at 12 days old, underwent surgery to have some of her lung and chest wall removed.
The procedure caused her to develop scoliosis — an abnormal curvature of the spine.
Her doctors initially gave her a removable back brace, which needed to be worn for about 23 hours a day, but could be taken off for things like bathing and swimming.
"Monique was very good at taking it off and hiding it so, we decided to set up a special program, she was the very first in South Australia to have it," said paediatric spinal surgeon Dr Catherine Cartwright.
SA first program
The Women's and Children's Hospital (WCH) in Adelaide introduced a full-body Risser cast program — a process that was previously only available interstate, with Monique as their first patient.
The process involved putting her onto a Risser frame to apply traction and stretch out her spine under general anaesthetic, before applying a cast to hold her back in place.
The cast was then replaced every three months as Monique grew.
Now, five other children are part of the program, headed by Alexandra Rimington, manager of prosthetics and orthotics at the WCH.
"The service is growing and the outcomes are becoming better and better each time," Ms Rimington said.
"I think it's a service we really needed to provide here and a service we needed to provide closer to home for these families, some of [these kids] have lots of other health conditions going on, so having something that's easy and convenient is so important."
Back to bracing
Monique has now graduated to a removable brace and her cast has finally been removed.
"It may never be perfectly straight, but very few of us have perfectly straight spines, and that's okay, and at this stage it's keeping her head nicely balanced over her pelvis so she can run around and jump and dance and [do] the splits and all those fabulous things," Dr Cartwright said.
The team at the WCH said Monique would need to keep wearing the back brace while she grows, and hope it will mean she can avoid major surgery in the future.
"I think she will continue in a brace for as long as we can keep her in it, and hopefully that gets her through those adolescent, puberty growth spurts," Ms Rimington said.
While she will still need to wear the brace for 23 hours a day, Monique's mother, Chantele Jacobs said it was a relief to see the cast removed.
"I'm excited for Monique because she can have some time out of the cast, which means we can go in the pool when it's hot, take showers and wash our hair rather than have to set it up at the sink in the kitchen [and] just have a bit more freedom to do what normal kids would do on a hot day," she said.
She also hopes having the cast off will mean Monique can enjoy bigger meals.
"We've been a bit restricted with our eating because we can only eat so much with a cast, so she's had lots of little meals," she said.
"With the brace going on we'll be able to eat a little bit more and put on a bit of weight, and just not be restricted with our food which will be nice.
"Unfortunately, if she eats too much she can get a really sore stomach and have to lie down or vomit so, hopefully we can stop that."
Ms Jacobs and the team at the WCH said they hoped Monique would wear the brace as much as possible.
"She's been so compliant with the casting, and she's done such a great job that I really do hope that she is compliant with the brace," Ms Rimington said.
"Returning to the cast is obviously an option, but it's one we'd prefer not to take so that she is able to do the things a child her age should be able to do."
So far, so good
But, her mum said things were going well so far.
"She definitely enjoys her hour of freedom," she said.
While there are still challenges ahead, with years of bracing yet to come and the possibility that she will still need to undergo some surgery, there is also hope that the big sacrifices she has made will pay off, and that she can enjoy a happy and healthy childhood.
"I think Monique's been incredible through this journey and I think that her family are the perfect family to have gone through this with," Ms Rimington said.
"I hope that when she looks back on this, she realises that it was worth it and that when she reflects on the journey she's had, we've made it somewhat enjoyable by making the casts fun and by her getting to come here and spend time with us at the hospital.
"I think it's a real team effort."