So going back to our first admission to Southampton, Romeo had thrush on his bum so the nurses would often be changing his nappies and checking it out when one of the nurses must have noticed something.
Completely oblivious whilst waiting for a date for his heart surgery a surgeon comes along to his cot, he introduces himself as a surgeon and automatically I just think great this is the heart surgeon, Romeo’s op will be soon. He starts asking questions about Romeo’s bowel movements since birth, I think it’s slightly weird but doctors always seem to ask about poo. So then he asks to examine him, sure I say.
He’s not examining his heart or chest though, he undoes his nappy and starts to examine his bum. This is when he tells me, Romeo has an anterior anus. I am in complete shock, this has come out of nowhere. With all the medical professionals who have checked over Romeo why only now at 4 months old is someone telling me there is something wrong with his bum.
This will require surgery, at the moment he is passing stools normally but as he gets older this is going to start causing problems as his anus is too high up and not in a natural position for him to pass stools.
I was devastated by this, to the point where I just couldn’t even tell anyone. I needed time for this to sink in, my baby has ANOTHER problem. He will require ANOTHER surgery. As if he hasn’t gone through enough already. Apparently anorectal malformations are linked to heart problems, once again Romeo would require more genetics testing to see if there is a chromosome abnormality causing his trio of defects. After a long 6 weeks these came back okay but still my poor little baby was going to have to endure more pain, surgery and recovery.
2nd October 2019 – Romeo went down for his op at 12pm, the anaesthetist took him from us in the theatre reception. I was gutted I couldn’t be there to hold his hand whilst he went to sleep. I know this op isn’t as major as his heart surgery but it’s still tough knowing that your baby is laying there being cut open. We didn’t know how long this op would go on for as they weren’t 100% sure if they would need to go ahead and give him a stoma. The hours started ticking by and I knew that they were most definitely going ahead with the stoma. We got to go to theatre recovery at 5pm to see Romeo. He was so calm; must have been the morphine, but it was nice to see that he wasn’t in pain.
The next day Romeo slept most of the day, which is good he needed to recover. The stoma nurse came round to see us and showed us how to change his bag, it really isn’t as bad as I first thought it might be. That evening I noticed Romeo’s work of breathing was bad, his chest was really recessed with every breath he was taking and he was breathing fast, really fast (92 breaths a minute). I asked the doctors to check him over, his chest was clear so they couldn’t work out why he was like this. He also started swelling up all over, now I started to worry as swelling can put a lot of pressure on his heart. He had a chest x-ray that night but it was all clear. The next day he was getting worse, more swollen and faster breathing. By now the nurses looking after him were starting to get worried. I demanded that they get a cardiologist to check him over, after waiting 6 hours the cardiologist came and did an echo. Thankfully his heart was fine but no one could understand why he was breathing like this. They increased his diuretics to reduce the swelling and I asked the doctors for him to be put on high flow oxygen just to help with his breathing, they agreed and luckily over the next 3 days he was back to normal.
Over those days I was now emptying his stoma myself, it’s a bit smelly but really not that bad and not as frequent as changing a nappy. The stoma nurse came round another 2 times and I changed the bag with her observing. I now feel confident with it and we were discharged after a week in hospital.
So far so good, no leaking. Time will tell how I get on with it but this isn’t permanent. Thankfully once his bum is fully recovered his stoma will be reversed. The way I look at it is it’s just another way to poo, just like he has another way to feed and it’s another string to add to my bow as a nurse mum.
I didn’t know if I would ever really share this story, I almost felt a bit embarrassed about it at first. In denial. But what is there to be ashamed of, my baby is special. He’s been through 2 ops in 2 months, this is part of his journey. He is an incredible young man and been through more than most adults have in their life, I’m so unbelievably proud of him ❤️