Personal Stories
Chris's story - Pat Porter

We got married 10 August 1993 and on 14 May 1994 (9mths and 4
days in case you were wondering) our son Christopher was born.
Labour had been horrific (48 hours) and I ended up having an
emergency caesarian. I was 36, had been denied any prenatal tests
as I was considered too young (for our area) and no one at the hospital
gave us any cause for concern regarding Chris so after 4 days we came
home. I took ages to recover from the operation as being used to total
independence as an ex-working woman I thought I'd be able to cope alone.

Christopher was a difficult baby. He would wake crying,
I'd feed him change him, he'd cry and cry and cry until I
finally lulled him back to sleep for an hour before he'd wake
again for another feed. I had PND but hadn't realised -
just thought that was the way all new Mums felt but the
crying did not help.  

At 3 months I decided I had to join a Mum and baby group just to get out of the house-really not
my scene at all but I went. To my surprise there were other women there whose babies didn't sleep, cried all the time etc - I wasn't going mad after all.

This group was a godsend but it was here that I started to notice that Chris wasn't advancing at the same pace as all the others; I put it down to paranoia. At 6 months that group finished and 3 of us joined a Mum and toddler group at the local church. It was here that 2 years of nightmare began.

One of the old biddies running the group came over to me on my second visit and said, "Oh I didn't realize your son had Downs Syndrome, but of course he is still welcome here." I can still remember the exact words today. My heart stopped but I smiled at her and said, "He doesn't" and carried on. At the end of the session I was pushing the pram back home with another woman I burst into tears and told her what had been said. She (a neighbour whose boy was born exactly one month before Chris - who I'd never met before Mum and baby group) said how cruel to make such a comment and that she was sure there was nothing wrong with Chris. I couldn't stop worrying so I went to see my GP. She pooh poohed the old biddy and said she couldn't find anything untoward and that she would know if there was cause for concern. I went away comforted but now I was always looking to see if Chris was doing everything that the other babies were doing.

A couple of months later we went for a progress check, and he failed most of it, but they said it's not unusual and everyone's different that boys are notoriously lazy and that he would catch up and they'd keep an eye on him and recheck in a months time. We went back he'd caught up on some things but was still lagging in most. They said they'd recheck in a months time. I went to see my GP- reminded her of that old biddy and pointed out Chris was missing his milestones. She said she'd refer me to a paediatrician just to put my mind at rest but she was sure nothing was amiss. We waited for the appointment, and eventually it came. She said that it was clear Chris was missing milestones but that I shouldn't be too neurotic about it as "they all catch up in the end". We had a follow up appointment 6 months later with a different doctor- she said the same thing. We had another follow up 6 months after that. This time we saw the consultant. By now Chris was almost 2 years old and had fallen a long way behind his peers- no words only just walking, no self feeding - the list was longer than the things he could do. She agreed that further investigation was necessary and arranged tests.

The results arrived and the consultant 'phoned to say she needed to discuss them with us as she'd never seen a result like it. I didn't realize that if the doctor offers to come to your house its bad news- how naïve! She came explained the result. I felt vindicated but still shocked. Where do we go from here?

Well Chris is now 9 and a big healthy boy. We've had no health problems along the way so we've been lucky. However there have been battles with education and getting the right therapists but I've learned to persevere to get him the best help possible. He has recently been tested for autism as he has behavioural problems and it has been acknowledged that he fits into the spectrum. I'd been saying for about 5 years that his problems were more than just the Downs- (his blood test shows 10% trisonomy 21) and finally again I have been vindicated. Now I never take no for an answer and pursue any concerns until I get a satisfactory answer. I never accept that the experts know best - I know my son - I know him best and that's what I will get for him.

Pat married to John - 2 sons Christopher mosaic downs and autism, Matthew autistic.