His Story - Blissfully Unaware

I felt like a fish out of water getting him home. I had no idea what to do. How could I tell if he was too hot or too cold? This was my main concern. Thankfully, the first people we saw were our next door neighbours. They had two toddlers so were able to reassure me and give me some tips.

We were consumed in the first couple of weeks with visits from family and friends all wanting to meet our little man. At that time I was also trying to breastfeed him. This was the expected norm and something that I was keen to do. It was a complete disaster! Harrison was fussy and couldn't get the hang of it. Every time he did work it out, it felt like somebody was piercing me with a red hot poker. It was far from the wonderful bonding experience I was expecting. After persevering for two weeks and a lot of pain and upset, we switched to bottle feeding because Harrison was not getting the nutrition that he desperately needed.

The next four and a half months Harrison struggled to feed, did not gain weight at a satisfactory rate, and caught every illness doing the rounds. This was despite being predominantly housebound just because I couldn't get my act together to get us out of the house! I couldn't believe how difficult parenting was. Totally not what I was expecting and completely out of my comfort zone of a nice structured environment!

The local doctors surgery became our second home so it was probably hardly surprising that Harrison contracted concurrent viruses and infections. I was convinced that 'Paranoid Mother' must be written across Harrison's medical records. Something didn't seem right but I couldn't put my finger on it; especially as the GP's verdict was always 'just another virus'. Over the years, I've learned to trust my instinct and not be fobbed off if the answer isn't obvious. 

Harrison was weighed in clinic at least twice a week so my days were obsessed with trying to feed him at every opportunity. He was only able to manage small volumes at a time so we had to increase the number of feeds day and night. I kept a feeding diary documenting all that went in and estimating the volumes vomited back. Despite our best efforts there wasn't much change in his weight. I felt like a failure because I couldn't even work out how to satisfy Harrison's basic needs. How could I be so bad at this? The health visitor suggested that maybe Harrison was intolerant to the baby milk so recommended that we switch to Nutramigen (a hydrolysed hypoallergenic formula), to see if that made a difference to his weight gain. It wasn't available on prescription at the time and cost an eye watering £11 per tin. Doesn't sound that much now, but back then it was as though he was drinking liquid gold!

During these four months we were unaware of Harrison’s underlying genetic condition, so he had all of his scheduled vaccinations – even the live ones! A compromised immune system is one of the symptoms of 22q DS, although individuals are all affected differently. Giving live vaccinations to somebody with immune deficiency is not usually recommended. Thankfully, he coped with them magnificently. Somebody, somewhere, was looking after him those first four months whilst we were all unknowingly flailing around in the dark.

When Harrison was three months old, I started preparing to work from home as an online tutor. I attended a three day workshop in London, to learn how to build a website using HTML. Twenty three years ago we didn't have the luxury of pre-built customisable websites! It was emotionally difficult for me to leave Harrison each day, even though Bernard was working from home and his sister-in-law came round to help him. Harrison seemed very unsettled and just cried silently for the whole time.

I never did get to use the skills I'd learnt, firstly because of the relentless feeding and weighing regime, shortly followed by the whirlwind of his diagnoses and all they brought. Harrison became my full time job.

One of the new born outfits that finally fitted him at 3 months!