Adams story-living with IA (Imperforate anus)

Adam was born on 7 October 2009 and we had a stressful birth with Adam being born face presentation, (one in 10,000 births) causing him to become stuck and to stop breathing. His heart rate was only about 10 beats per minute when he eventually came out. They had to resuscitate Adam and I almost lost him completely. 

They put him in an incubator straight away to assist in stabilising his body temperature and was taken to a Special care nursery. I didn’t get to even hold him as he was so sick.

Because of this, we changed his nappy inside the incubator to keep his body temp as stable as possible and he was only taken out to breastfeed. 

A nurse had taken Adam out of the incubator the next evening to change him and discovered he had no rectum or anus. This is also called Imperforate Anus. 1 IN 5000 babies equally boys and girls are born with this birth defect. There is no known reason why this happens, but it does happen during the first 7 weeks of gestation.  I had started to worry that he still hadn’t passed any meconium and it was close to the 24 hour time frame. What I thought to be colostrum he was spitting up, turned out to be bile from not being able to poo. They put a tube down his throat to drain the bile into a specimen jar.

The next morning was full of activity and getting ready to go to the airport via ambulance, so we could be taken by the flying doctors service to Brisbane Hospital. Toowoomba was not equipped for what Adam needed.

That day was a blur, my son going in for emergency surgery to create a colostomy. Adam spent 5-6 days in NICU (neonatal intensive care unit). Then 3 days in Special Care before we went back to Toowoomba for monitoring, making sure I knew how to change his colostomy bag before we went home. Adam also was born with reflux to the right kidney and this kidney functions at 11% being a lot smaller than the left, and that functions at 89%. He was on antibiotics for the first 6 months of his life so he didn’t get an infection in his kidney.

Life was a blur for a bit with breastfeeding, a toddler and older siblings and learning how to make sure the colostomy bag didn’t come unstuck because then you had to start the whole process again. A fair amount of leaks occurred before I got into the habit of drying Adams skin around his stoma so it stuck properly.

At around 8 months old Adam had an anoplasty surgery to create an anus and rectum, with a pull-through procedure, basically pulling his small bowel down into the new rectum so they could connect everything they could. They weren’t sure at the start if this was even possible as his small bowel was very short. There was no warning as it for some reason didn’t pick up on the ultrasound at 19-20 weeks gestation. 

Adam had a special diet so there was no strain on his new bottom as it tried to heal. He had no dairy, gluten free diet but plenty of veggies and fruit to keep his poo soft again to avoid the strain. After a short period of time I had to go back home to learn how to dilate Adam’s new bottom so the scar tissue didn’t grow over the opening and make it the size it was meant to be for his age. This was an incredibly traumatic experience for Adam and I as it caused him a lot of pain at the start. 

When Adam was 12 months old he had a check-up with the pediatrician who told me he was doing fine. I wasn’t informed that I needed to have my son on a daily doses of movicol to help avoid constipation and thought the soiling was because of his nerves and muscles being weak.  We had moved back down to the sunshine coast around 6 months later. Waited for a new surgeon and pediatrician. 

It seems my son fell through the system and Adam was admitted to Nambour Hospital to wash his bowel out as he was severely constipated. We were in there for 7 days. This involved the same thing as glycoprep the medication they use for colonoscopy procedures. From 8am- 5pm daily with only clear fluids like apple juice and jellies etc. He had a few more stays in hospital like this after that. His new surgeon couldn’t believe I had no idea and how little I was informed about the care and treatment for Adam, having looked up Adam’s information, he saw we basically just got discharged and not much support after that. 

When Adam was 6, he got something called a chait procedure. I spent up to that point trying to get toilet training and toilet timing set up for Adam, however there wasn’t enough feeling from nerves around his sphincter that was created with the anoplasty. Generally they get you to wait until 6 as they don’t know until then if the toilet training will be successful. Adam is very prone to constipation, and it is still difficult to manage at times, with the frequent growth spurts, and diet, sometimes too much sugar or dairy can make Adam constipated or soil. Balance is important. Chocolate is not very good for his tummy and Weetbix has to be avoided. His body likes a mixture of muesli, antioxidants and protein.

The chait stays in the cecum and gives you an easy way to flush out the colon. I use 400ml saline and 30ml of glycerol into the catheter with 60ml syringes. The chait has to be changed every two years. Adam has a twilight to put him to sleep, the anxiety of anyone touching his button while he is awake is too much, with Adam also being on the autism spectrum.

IA (Imperforate Anus) is a lifelong condition and Adam will also need the chait permanently. This will not affect Adams ability to father children or have a relationship/marriage if he chooses to. Adam has had psychology since he was 6 (now 14) to help manage with being on the spectrum and with IA. 

The ribbon to represent Anorectal Malformations/Imperforate Anus is Turquoise, which encapsulates hope, strength and a positive attitude. Zebra stripes were added to show the uniqueness and represent how no two zebra markings are the same, nor are people living with ARM/IA. All unique and beautiful.

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