Alfie was born at term after a fairly uneventful pregnancy….but I knew there was something wrong! He was my first child, I had no experience with babies and I had no experience to base my opinion on, call it mothers intuition, I just knew that my baby was poorly! He was a tiny little thing weighing in at only 5lbs 12 oz (2.6kg in new money) with sealed eyelids that were operated on when he was 2 days old! After 2 weeks of breastfeeding, every 2 hours where I thought we were doing a great job, Alfie was weighed and now tipped the scales at 4lb 12 oz (2.1kg). I was scared, felt guilty and was worried sick about my boy….suffice to say a hospital stay of 5 days followed where he was fed through a tube up his nose called a nasogastric tube.
Unfortunately, when we went home, even though we converted to bottle feeding with expressed milk, he didn’t grow, the pattern for the first 8 weeks of Alfie’s life was home for 2-3 days and then back to the hospital for a few more! After all this back and forth, a consultant finally sat down with me and heard my 45 minute rant about how I knew my Alfie was poorly and yet no one would listen accusing me of overreacting or that Alfie was just a failure to thrive (like that is any better huh?!?!?!). He listened, for the first time, someone actually listened, my 8 week old couldn’t hold his head or smile, was being fed for 2 hours with milk being dripped into his mouth and then an hour off before we started again….I watched a lot of DVD box sets during that time! This very kind consultant ran some extra tests, even though we had been seen by a parade of doctors that refused to acknowledge that there was anything wrong with Alfie.
When Alfie was 10 weeks old, I had an appointment to see the lovely consultant, on the morning of the appointment I was getting Alfie ready and had a phone call from the hospital asking if Alfie’s dad was also going to be coming….he hadn’t planned to as by this stage he was back at work….I knew then that they had found something.
Alfie was diagnosed with a rare chromosome disorder, it doesn’t have a name and there are no other persons known with Alfie’s specific combination of chromosome errors, although we can find people with similar symptoms, yet different diagnosis. If you want to be bored by the in-depth genetic jargon that I could quite easily get on to, feel free to email me and I would be happy to discuss…. but for now, we will just say that 13 is a lucky number for us!
After his diagnosis, things were a blur, seeing specialists, having more input with alfie from physiotherapists, occupational therapists, community nurses, portege, developmental checks and developmental consultants. At 8 months, Alfie was still struggling to get enough food to grow and couldn’t take solids so he started to be fed through a nasogastric tube, but this time, my cheeky little boy had a sense of humour and took great delight in pulling it out either directly or indirectly through sneezing or……..moving on
At 13 months he had his 1st surgery to put a feeding tube through his stomach wall….this made a massive difference to Alfie, he went from this skinny little thing to a complete chunckster. At this time, Alfie could smile by now but still struggled with head control, could not grasp, fix and follow, roll or sit up unaided.
Alfie was very lucky to have a lovely little brother join his family when he was 18 months old and all the hopes were that he would watch his sibling develop and then copy, but unfortunately things for Alfie are not that simple.
Today, he is still unable to walk or sit up unaided, he is fed only through the tube in his stomach, has undergone a further 2 surgeries and an uncountable number of hospital stays, doctors appointments and therapists appointments, he is non-verbal, registered blind and far to prone to infections, but that is not the whole story for Alfie. Rather than write anymore, let me leave you to watch a couple of short clips to meet the true Alfie….the funny, cheeky, handsome, clever, loving bestest boy in the world
Thanks for reading