I’d somehow managed to reach the ripe old age of 30 years old without ever having reason for feeding tubes and gastrostomies to register on my radar. Until that is, I was faced with the situation of my tiny son being repeatedly admitted to hospital ‘failing to thrive.’
James was born full term weighing only 4lb 10oz. We were unaware at the time that he was later to be diagnosed with a rare genetic condition called Wolf-Hirschhorn Syndrome. His syndrome was in fact going to be the defining factor in James’ weight and growth over the coming years. His birthweight was also due to ‘growth retardation’ within my womb, also a significant feature of his later diagnosis. Retardation…. I’ve always found that to be such a hideous word, especially when being used to describe my son.
James Struggles.
At 11 months old James was found to have a large hole in his heart and so shortly after his first birthday he underwent surgery to correct this. We had hoped that this may improve James’ ability to gain weight. Unfortunately, it didn’t. Along with this James had severe reflux and much of his feed invariably ended up over me and everything within a couple of metres radius!!
During one of his now all too frequent admissions to hospital it was suggested that James needed some supplementary feeding via a nasal tube. I was taught how to insert these and how to boost his limited oral intake with feeds down his tube.
It wasn’t easy, as tiny as he was, he was a fighter…quite literally. I was often on my own inserting the nasal tubes as my husband was working ridiculously long and unsociable hours. I had to swaddle James in a towel and straddle him to get the tube down and stuck in place before he could wriggle an arm free and pull it out again.
Sometime following this James had a PEG fitted directly into his stomach. A PEG is one of many different types of feeding tube. However, the benefits were limited all the time he continued to have severe reflux. Unfortunately, his reflux was unresponsive to any of the prescribed medications. James still struggled to keep food down and to put on weight. It was heartbreaking. I’d spend hours feeding him and cleaning him after episodes of vomiting and still he would lose weight.
More Surgery.
There was no other option than for him to undergo a procedure called Nissans Fundoplication ….in layman’s terms, the juncture between the oesophagus and the stomach is tightened to prevent reflux occurring. During this surgery James’ PEG was changed to a different type of feeding tube, a Button.
It was slow progress at first but as James had finally stopped vomiting and we had a way of getting extra nutrition in him via his Button, he did gradually start to grow and put on weight. James currently eats a soft mashed diet but at 27 years old he still cannot consume enough calories to maintain his weight. He still continues to have a bolus feed in the morning and a 5-hour overnight feed via his button.
James’ growth and weight are very much determined by his genetic status but he has remained at 138cm in height for many years and he fluctuates between 38-39kg in weight. James is very cooperative with his gastrostomy feeding. He lifts his shirt and allows you to do what you need to do. I guess it has just always been part of him and he doesn’t know otherwise. At times when he hasn’t eaten it has been a relief to know I can get something down him through his tube. He’s also often reluctant to drink so it has been an absolute boon to know I can keep him hydrated particularly in the hot weather. As for getting medication down, its great for that too.
I know many people will have reservations about having a gastrotomy and will have not had the positive experience we have but I look back now and see it as a really positive turning point for James.