You could be forgiven for thinking that on getting home, mine and A’s life would something akin to being normal. For a while I thought the same. I could finally start planning beyond a day in advance, there would be less things to carry around and more freedom in general. But that dream was a short lived thing and deep down, I knew that would be only a brief respite.
In April 2010, we were back in hospital for the next operation. It would be an operation of two parts, with a gap of a few months between each one, but after those two pieces of surgery, surely A would be given a break? The outlook was good and if all went well, there would be no need for any further intervention, of the surgical kind. Life would be able to begin in earnest.
When A was born, not only was he diagnosed with Oesophageal Atresia – which had by this time been operated on and completely fixed – but he also had an ano-rectal malformation called an, ‘Imperforate Anus’. He was basically born with no bum-hole, relying on a colostomy bag and a stoma to get rid of the waste from his body. His next operation would create an opening, where there should have been one and would pull through his bowel to enable him to finally do what nature intended him to do.
Just being back in that place sent shivers down my spine, not least because we were back in the same cot bay, where we had awaited his previous piece of surgery. However this time I was prepared. I was stronger and more sure of myself – I knew what would be happening and our stay there would be much shorter.
The operation itself was a breeze – by all accounts A was a model patient, even demanding a bottle in the recovery room – something which under half a year previously, he wouldn’t have been able to do! After the events of that time, even writing this part of the account, appears uninteresting, but it’s an important step to be considered on getting to where we are now.
We were out of hospital within about four days. A’s stoma and colostomy bag were still in place, to give the surgery time to heal and it was my job, to make sure that the opening didn’t heal over completely, otherwise we’d be back where we started. So twice a day, I diligently lubed up the brutal looking metal rod I’d been given and dilated his new opening, gradually increasing the size until everything was healed. It wasn’t a pleasant task for me or for A, but it had to be done and thank god – he wouldn’t be able to remember it!
When I think about it, that part of his journey, was probably the easiest. We were in and out with very little excitement and I’m glad of it. It would be his final piece of surgery, that would be one of the hardest, but not for surgical reasons. The ending to that part of his story, would see my whole world, turned upside down, leaving me questioning my own ability as a parent and seeing the seeds of my poor mental health, grow into great weeds of insecurity.
Have birth defects effected yours or your child’s life? How did you get through those difficult months?