LIZ'S STORY

My name is Liz and before I start waffling about my family, CONGRATULATIONS on the birth of your baby. I really hope that you and your family are able to enjoy these early days to the full.

A bit about us and starting a family

I'm married to Jon and we have two sons, William and Thomas – who became known as Tommy as soon as he “zoomed” into the world – but more of that later. Jon and I had trouble starting a family (no idea why – we obviously weren't “doing” something right!) William was born five weeks before my 40th birthday after our final (6th) attempt at IVF. He is (what some would refer to as) a “typically developing” boy (likes knights, computer games and jokes or stories involving “poo”).

A (2nd) miraculous pregnancy

We loved being parents, but more IVF wasn't a realistic option so we assumed that William would remain an only child. When Will was 8 months old, George (a golden retriever puppy) took the place of surrogate sibling and we assumed that our family was complete. I was therefore pretty shocked and very surprised when I fell pregnant with Tommy. At the age of 42 (43 by the time he was due) my chances of having a baby with Downs Syndrome (DS) were relatively high based on age alone however I never seriously considered having any screening or testing because I knew that I couldn't risk this miraculous pregnancy in any way. I knew we would have the baby what ever the result – so didn't see the point. The possibility of having a baby with DS was something that we discussed a few times whilst I was pregnant. A few of our friends have children with different disabilities and in some respects we wondered “is it our turn?” That said I didn't really worry about it – even though I am a worrier by nature. I remember commenting to Jon after the 20 week scan that the baby's heart had looked absolutely fine and that this was a good indicator that the baby might not by affected by DS. I also remember thinking that one of the babygro's that I'd been given as part of a leaving present from work was “a bad omen”. It said “100% perfect” on the front – and I specifically thought- “but what if my baby has DS?” But despite having had these and other specifically “DS related” conversations/thoughts (which I find weird in retrospect) we didn't worry particularly. We were just amazed that somehow we'd managed to grow a baby without the intervention of folk with white coats! Tommy made a very rapid appearance in August 2009 (40 min labour from start to finish). His speedy arrival precipitated the “Tommy Zoom” nickname (Tommy Zoom is a Cbeebies TV character).

He'll have no problem with flip flops!

Our delivery midwives were lovely (Gill and Laura). After he had been delivered I remember being surprised that he didn't look as much like Will as I had expected. We commented on his round face (maybe a little like Jon's Auntie?). Luckily Tommy managed to breastfeed from me straight away. It definitely helped that I'd been able to feed Will so I had experience of different holds and positions. (Breastfeeding experience also gave me confidence to question a (stupid) remark from a different midwife the next day about him “probably needing a bottle” and “not being able to breastfeed” - absolutely not the case!) After feeding him Gill, who was the senior qualified midwife, checked him over and as she was doing it I asked whether or not his toes were webbed (something that runs in my family.) “Yes! Very webbed on one foot.” Then Laura (who was a student midwife) and Jon shared a joke about how wide the gap between his big toe and other toes was (“He'll have no problem with flip flops!”) After she'd checked him over, Gill commented that she thought she'd just get the paediatrician to check him over. I asked what she thought the problem might be. I can't remember what she said. It was something like “Lets just wait and see what he thinks” but I got the impression that she wasn't quite sure and had been a bit concerned about the extreme webbing on his foot. My stomach lurched and I tried to put it to the back of my mind whilst I had a bath, reasoning that webbed feet runs in our family.

The paediatrician came down to see Tommy when he was about 2 hours old. When he examined him he asked if he looked like anyone in the family – I just waffled on about his round face and Jon's Auntie. After he'd examined him, he started to tell us that he'd noticed “several dysmorphic features”. Suddenly light dawned and I immediately knew where he was going.. “Are you talking about Downs Syndrome?” I asked. His relief (that I had raised it) was obvious as he confirmed that yes he did think that Tommy had DS. As he left I think Gill and Laura looked more stunned than us. Gill apologised that she had not realised that this was what he was going to say.

William and Tommy - September 2009

We all sat looking at his “dysmorphic features” Laura and Jon had exchanged looks as the sandal gap had been pointed out! I think all 4 of us were in denial trying to explain away the “features” (I've only got one palmar crease on one hand so his single palmar creases could be from me, his ears and eyes didn't look as low/out of alignment as the doctor had seemed to imply, he had fed very well (a good thing) and his heart sounded fine (phew!)) Maybe he was mistaken? However I think we both knew immediately and instinctively that this was no mistake. On his first night I really struggled to come to terms with the reality of what I had imagined at times whilst pregnant. I turned my back on his cot as I couldn't bring myself to look at him. I have felt so guilty about this since but realise it was probably perfectly natural as I mourned the “100% perfect” baby that I had hoped for.

By contrast Jon spent the first night of Tommy's life on the internet Googling everything he could on DS and had basically ended up ticking off more “dysmorphic features” that were apparent in Tommy. To cut a long and waffly story a bit shorter, Tommy's diagnosis was confirmed by blood test about 48 long hours later. Whilst we expected the result, the positive confirmation simply took away what little hope I had that there may have been a mistake. I think the midwife (who had naively popped in, seemingly desperate to tell me the results without waiting for the paediatrician or Jon) was rather shocked when I dissolved in to tears all over her. In retrospect I can't believe she just blurted it out in such a matter of fact sort of way! By the time I'd cried it all out things started to feel better. The not knowing had been difficult and in some respects having a definitive diagnosis helped me to move on. Jon's access to Google seemed to have helped him accept the reality of our little boy's condition a lot quicker. It took me about a week before I sat down to look at all “the stuff” available on the internet. Before then I really hadn't wanted to know. However when I did I found it frustrating that I couldn't find more – particularly a local support group and a web forum. (I'd been an avid forum user throughout our IVF treatment and had also attended a local infertility support group.)

Telling people

One of the most difficult things for me was the dilemma about how to tell other people about his condition without it getting in the way of the fact that we wanted to celebrate the birth of this miraculous baby first and foremost. We announced his birth to most friends on facebook and by a mass email when he was 4 days old. I didn't mention his condition to friends until responding to congratulations emails/texts and when we did so, we tried to play it down emphasising that we were all fine about it and being slightly jokey – “we got a little bit more than we bargained for...”. We had a quite a few well intentioned responses telling us what a blessing he would be and kept “B” count. I also found it difficult to deal with a couple of overly positive responses. One was from an elderly relative and gently criticised me for apparently using the word “unfortunately” when I had written to tell her about Tommy. However the most difficult contacts were verbal conversations with neighbours and people who we weren't in touch with via text/email. I found it difficult at times to cope with the gushing “oh isn't he gorgeous?” type congratulatory cooing when my main thought was “When is the 'right time' to mention DS?” It was at the front of my mind whenever Tommy was introduced to a new person. Initially I needed to tell people about it however dealing with other people's shock and embarrassment when it's apparent they just don't know what to say is not easy when you're feeling a bit delicate yourself. As time went on I began to realise that it wasn't something that I needed to mention unless it came up in general conversation. However for ages I wondered whether or not people could tell whether or not he had DS – I still do at times. In general I don't think many people will realise that a baby (or very small child) has DS unless they themselves have close experience of the condition.

Over the past three years I've been tempted to knock a few months off Tommy's age when asked how old he is to avoid the surprised “oh he's quite petite” comments or similar. However as Tommy has grown older I've just stopped worrying about it. When you get to a certain stage with any baby – weeks have turned into months and you have to think hard about just how many months old the child is anyway!

Tommy has an infectious giggle. He is a TV addict and is able to indicate when the “wrong” programme is on - Abney & Teal and Charlie & Lola are current favourites. In particular he loves playing with balls, looking at and touching faces, being the centre of attention at his mainstream nursery and climbing to explore places that he probably shouldn't. He has enriched our lives and taught us so much more than we could ever have envisaged 3 years ago. Whilst life holds its challenges for us (as corny as it sounds) I couldn't imagine Tommy being any other way and so for me is as 100% perfect as his “typically developing” big brother.

Liz Allen January 2013

Tommy - August 2011