"Our 2yo daughter was in the bathroom when my husband and I heard a bloodcurdling scream."

Every parent has to endure toilet training. Some children pick it up pretty quickly but for others, it can feel like it’s never going to end. For us, it turned our world upside down in an instant.

When our daughter, Addison (Addi for short) was two-years-old, it seemed, she had a bit of trouble with toilet training. At that stage we had no inkling whatsoever that something was wrong. We saw her straining, but we thought it was just how little ones learnt to go to the toilet.

We would always make sure Addi would have her foot-stool to ensure her body was in the right position and taught her about keeping relaxed, to let things ‘happen’. The main thing was, at that stage, we were unaware that her body was developing chronic constipation.

All of a sudden one night, when she was in the bathroom, my husband and I heard a ‘bloodcurdling’ scream coming from her. She had a rectal prolapse, when the rectum muscles collapse completely, and it protrudes outside of the body.

We didn’t know what to do, she was so little and in so much pain. We tried to remain calm, not knowing exactly what had happened, called an ambulance and she was taken to hospital. The doctors said because this had now happened once, chances were that it would happen again, as her muscles had weakened in that area.

In time, we were told that it would sort itself out and the muscles would strengthen again. We thought ‘fair enough’ we can manage this, but as the years progressed, we felt that something was not quite right.

Now Addi is eight and for the last two years she has been on medication to help keep her regular and had a procedure to inject botox, to relax the rectum muscles, and allow the body to get into routine without tension. We tried numerous diets, but after the initial pro-lapse at two, Addi developed a ‘fear’ of food, for not knowing how her body would react.

For many years she would flip from chronic constipation to social incontinence in the same day. It was a really hard time; poor Addi didn’t really know what was happening and I could see her beautiful personality and smile fading away.

In June, Addi had the A.C.E. (Antegrade Continence Enema) Chait Trapdoor surgically inserted, and every day we need to manually flush out a tube attached to her large bowel with a special saline and glycerol solution. Doctors anticipate this will need to be in place for the next five years.

She isn’t able to swim, and she can’t do a lot of physical exercise, or sport at school, because we have to be careful of infection and discharge/ bleeding from the wound. But overall, things are better than they were a year ago. Back then she couldn’t run or laugh, cough or jump without things going pear shaped.

Following the procedure, Addi cut off most of her hair and donated it to kids with cancer, to help others in need. Seeing that other kids struggled sometimes too, and to know she isn’t alone also helped to give her confidence.

Now Addi is in Grade Three and during the day she can do everything herself. If she needs help, the teachers are amazing and very re-assuring. We try to get her home from school early as the flush can take an hour.

We make up a saline and glycerol solution to help the bowels kick into action, this entails very slowly flushing the solution through the appendix, into the large bowel to stimulate the bowel to move and pass through as nature intended. The process is repeated four times, clamping off each time the syringe is safely removed.

It’s vitally important not to rush the process, otherwise it will trigger extreme pain and discomfort from stomach spasms and painful cramping. It’s all about the art of distraction, breathing and keeping busy.

I’m not sure how we would have gone through this whole experience without the support of all the doctors and nurses at the hospital. The support of the Gold Coast Hospital Foundation, who funds the Child Life Therapy Program, including Child Life Therapist, Jess, who helped prepare us for all Addi’s surgeries has been invaluable. She’s had five various procedures in the last two years.

Having Jess, as our Child Life Therapist, has been absolutely paramount to Addi’s recovery from the get-go. Doing the surgery was an especially scary time for us, but having Jess there was amazing – her confidence, reassurance and beautiful smiling face helped us beyond words, she is our guardian angel in disguise.

One of the things Jess really helped with, is she completely changed Addi’s state of mind going into surgery. Since it’s a relatively new type of surgery, she had a totally different approach and made it all about Addi feeling confident, knowing how to tackle the ‘hard stuff’ and being able to teach people around her, about her condition. Addi even felt enough courage this week to stand up in her class during Show and Tell and educate her friends, which was difficult, but it gave her a sense of healing, which we and the Gold Coast University Hospital team, have all helped to instil in our beautiful girl.

It’s been a blessing to see Addi’s confidence slowly come back, albeit it’s been a long road. She’s always been the light of our lives, our ‘old soul’, even the nurses and doctors love her to bits. It was hard to see her spirit disappear through this, for a while, she kind of stopped being herself. It broke our hearts, but last month we started seeing the cheeky Addi smile come back, and to see her just being a kid again  and having fun, the way life should be.

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