Seven years ago, on the 11th of September 2009, a baby boy was born. Not into the welcoming arms of his mother, but into a world of noise, bright lights and haste. From the comfort of his mother’s womb, he was introduced to the harshness of an incubator and the jostling of hands belonging to a myriad of people.
That night my first child, Alexander came into the world. Not the blissful, joyful way it’s supposed to happen. His debut met chaos, worry and stress, that would follow him for years. That was because all was not right with his tiny little body.
I would later discover, through a haze of post anaesthetic drugs and a cocktail of painkillers, that he had Oesophageal Atresia.
Along with an imperforate anus. That is, there was a large gap in his oesophagus (ie, food tube) that prevented him from eating, along with his colon not connecting to a perforation in his bottom, meaning he couldn’t poop.
The hustle had begun.
It’s not always easy putting into words how difficult those first few months were. Most of the time it passed through teary eyes, hormones and hospital visits. I couldn’t take my baby home, I couldn’t breastfeed like I had always wanted to. Hell, I couldn’t even feed him the normal way.
All I could do was diligently pour the milk into a tiny tube that led to his stomach and empty a small bag attached to his abdomen that got rid of his waste.
I think back to that time often, comparing it to how things are now. Sometimes I think it was easier then. The many operations he had in that first year of life are things he will never remember. They live only in my own memories of brightly lit anaesthesia rooms, long weeks sleeping on hospital wards and the endless form signing.
That first year saw his oesophagus repaired using a newly developed method that had only been performed on 6 children before Alex. Whereas usually with Oesophageal Atresia, children either had the two ends of the oesophagus stretched until they met and connected, Alex had something entirely different.
In a gruelling 8 hour piece of surgery, his amazing surgeon used part of his small bowel (the jejunum this study included one of the surgeons who operated on him), took it connected still to its blood supply and fixed it in place in the gap on his oesophagus.
Following that was the sheer joy feeding him with a bottle for the first time. I felt like a new parent all over again!
The rest of the year followed in a similar fashion. More surgery, this time on his bottom, a new hole was fashioned, his colon connected and the result of him pooping how he should have all along.
The hard time started 5 years later.
Alexander had steadily grown into a very bright and happy five-year-old. Of course, there had been some difficulties with food textures and a delay in physical development, yet he soon caught up with it all.
A routine endoscopy, however, sent our whole world crashing down around our ears. A further contrast scan showed that Alex’s new oesophagus had grown quicker than he had. Instead of going from point A to point B in a straight line, it wound and twisted all over the place, meaning food was getting stuck and never quite reaching his stomach.
Before this, we had put his constant vomiting and weight loss down to reflux. But this, this was the real cause. to go with it, it showed he had a stomach hernia also.
While we waited for a surgery date, Alex was completely nil by mouth. No solid food at all. Like when he was an infant, he was fitted with a feeding tube directly into his stomach.
What follows is a rough timeline of events until we get to the present day. Far too much has happened in the last three years to describe it all.
- Initial surgery to correct hiatus stomach hernia
- Nissen’s Fundoplication put into place to prevent stomach contents escaping
- 2 and half weeks in hospital
- Discharged and back into hospital after 2 weeks.
- Had 6th birthday hospital
- Still vomiting
- Feeding tube fitted so that he could gain weight.
- Spent another week in hospital
- Gained enough weight but endoscopy revealed oesophagus hadn’t straightened out.
- Spent a night in hospital
- Went back for surgery where a portion of the oesophagus was cut away to straighten it.
- 2 weeks in the hospital.
- Alex started being sick again.
- Had another endoscopy, there was a blockage.
- No idea what was causing it.
- Back onto nil by mouth and tube feeds.
- 1 week in hospital to get used to milk feeds again.
- Back in hospital for exploratory surgery.
- Turns out oesophagus was twisted at the bottom.
- 2 weeks in hospital
- Alex finally able to eat and drink again.
The state of things now.
We honestly thought things were getting better. After he left the hospital in the September of 2016, Alex was steadily gaining weight. He was happy, full of energy and so overjoyed at being allowed to eat solid food again.
I was able to find regular work once more. The incessant hospital visits had made me almost unemployable and my partner couldn’t work as he needed to take care of our twins while me and Alex were away.
However life never really gives you a break. As hopeful as we tried to stay, it seems that we’re back to square one again.
On January 12th 2017, I, had to take Alex back to hospital. Again he had began to vomit and he had lost over a kilo in weight over the Christmas period. It wasn’t right. His weight should have been going up instead of down.
After a long day of waiting rooms and travelling far beyond where we live, we got the unfortunate news that it looks like Alex’s oesophagus is twisted again. Along with this is the decision from his surgeon, to avoid solid foods again.
All I can say is that we were crushed. I had to sit and watch and my now 7 year old break down into a hysterical and terrified mess. I had to scoop him up in my arms and reassure him that everything would be fine. That we had been though this so many times now, that we were used to it, that we could get through everything.
Try telling that to a child who couldn’t eat for nearly three years, was then finally able to and who in that moment had it torn away from him again.
Our stays in hospital has turned him into a shy, sensitive and incredibly anxious young boy. It’s not like when he was a baby. He remembers now and he understands what it all means. More needles, more cannulas, more scars to join the silvery patchwork all over his stomach, chest and sides. More chaos and more stress.
The stress of it all has effected my own health. I even had a stroke during one of his hospital stays.
But we go on.
I could scream and shout about the harshness of it all. I could rant about how life is so unfair. But I won’t.
At the end of the day you go on. You accept that this is the way things are and you push forward, because you have to. There is no alternative.
Alexander’s story is far from finished.
Yet still, we will go on.