I am Sarah and I live with my husband David and our two girls Hannah (almost 6yrs) and Beth (3 1/2 yrs). I still remember clearly that special time before our 12 week scan when only David and close family knew that we were expecting our second child. I felt tired and a bit nauseas but was absolutely thrilled with our little secret. My pregnancy with Hannah had been straightforward and I was expecting the same journey again with all that extra experience of being a second-time Mum and I was looking forward to it all. In the weeks before our scan we had a lovely holiday camping in France with Hannah then aged 18 months and I couldn’t help but daydream constantly about ‘this time next year ……’ It was going to be great, the new baby would be about 6 months the following summer and Hannah 3 yrs – what fun we were going to have and how blessed did I feel?!!
The peace and initial joy of being pregnant again was unfortunately rather short-lived. At my twelve week scan the sonographer suddenly announced that the baby’s neck measurement was ‘a bit thicker than normal’. This statement blissfully bypassed David but I knew the possible implications of this. I was sent off for a blood test and was told they would ring me the next day if there was a problem. David slept soundly that night but I was troubled. On my way home from work the following day I received a phone call with ‘private number’ flashing away and I knew that our life was about to change forever. The hospital geneticist was on the other end and after a five minute chat I was left with the knowledge that our baby had a 50% chance of being born with DS. I was shocked and upset but my biggest concern was telling David. We had already long decided that we wouldn’t have a termination and I knew I wanted this baby but I also knew David would struggle with the news more than I. I’m the optimist in our family but at that moment I wasn’t feeling very positive and I wasn’t sure if I had the strength for both of us.
David respected my decision not to have an amniosynthesis and we decided to have regular scans to check our baby’s progress instead. We had a very kind, patient and understanding Obstetrician who always said ‘Hello beautiful girl’ when he saw her on the screen. His kindness was in stark contrast to the disastrous initial meeting we’d had with a Midwife who knew nothing about Down’s Syndrome and who sat opposite us behind a big desk clutching a post-it note with ‘1 in 2 risk DS. Want to keep it’ scrawled across it. In the end I pitied the woman who was so out of her depth and clearly uncomfortable with the whole thing. Maybe if I’d said we would like a termination she’d have managed better, after all there are procedures and protocols for that. It seems there is little in the way of professional, unbiased, helpful guidance and advice if you choose to continue with the pregnancy. I know I am not the only one to have experienced very poor and unacceptable care in the early days.
For the first 24 hours I was very positive after all there was still a 50% chance that Beth wouldn’t have DS. Also times had changed, people with disabilities could do all sorts of things that were never dreamt of before and I was going to give my child everything she needed to succeed whatever she did or didn’t have. However the next day as I was getting dressed for work I broke down in tears, who was I trying to kid? This is not what I had wanted or dreamed about. My child wasn’t going to be able to do loads of things, Hannah now had a little sister that was going to be a burden rather than a friend and I feared a loss of the full life that we were lucky enough to enjoy. For ten days I wallowed in this mindset and I wondered how I was going to get through a whole nine months of not knowing.
Thankfully my mind was changed by a series of coincidences over a weekend. We were sitting in a park watching loads of kids running about having fun and Hannah was rolling down a big grassy bank. David commented that that you don’t see many kids with DS. We discussed the 92% termination rate in the UK and really felt the heaviness of ‘going against the flow’. I said that my biggest fear was that we would be isolated and cut off by people as I watched groups of friends and families enjoying time together. We started to walk home across the field and for a while it was just me, David and Hannah until the moment was broken by a young boy charging towards us with a huge smile and his arms open wide followed by his Dad trying to keep up. The boy was called Joe and he had DS and it also happened that David knew the Dad from a while back plus they were enjoying the park with a big group of friends. Our fears or being the only one with a child with DS and being isolated from people subsided instantly. We told him about our situation and felt so reassured ‘the highs will be higher and the lows lower’ he said. We would later see how wise his words were. On our way home we stopped to buy a Sunday paper and the first thing I saw was the beautiful cheeky face of a boy with DS who had just done some modelling for M&S. From that moment on I felt much happier and David was too.
As it goes I didn’t have too long to find out if Beth had DS as she arrived 2 months early! She needed surgery to fix a bowel problem (duodenal atresia) and it was then we found out about the hole in her heart. My obstetrician was very apologetic that he hadn’t spotted the hole on the many scans we had but I was glad I hadn’t known before – one less thing to worry about.
It was hard initially once Beth was born, Hannah was just over 2 years and Beth needed feeding with an NG tube because she was too week to suck. At 6 months she had open heart surgery at The Royal Brompton Hospital and this is this day we celebrate the most because it was the turning point for Beth. She was suddenly more alert, breastfeeding and everything just felt a bit more ‘normal’.
So we fast forward to today and I feel so fortunate to have my two little ladies. It turns out Beth isn’t a ‘burden’ to Hannah but rather ‘the best sister ever’! The bond between them is very special and I have seen equal adoration. Hannah is brilliant with Beth and helps her to do so much. Beth idolises Hannah and copies her every move. Beth is doing so well and when I look back at the weak and frail little baby to the strong bouncing Beth today I cannot believe how far we have all come. Beth loves being at preschool and they love her too! Who would have imagined that Beth would be ‘the poster girl’ who recently was a winner in The British Journal of Photography ‘Portrait of Britain’ competition? Certainly not me!! The country may only see her gorgeous face for a couple of months but I have the joy of seeing that smile every day!
As for daydreaming about camping ….. Well we camped in France this year and are hoping to camp next year in Cornwall. We had to wait longer for that camping holiday which made it all the more special because after all we all know ‘good things come to those who wait’ and Beth has taught us all the power of patience. I still feel very blessed and our life is fuller than ever. As for David, well he couldn’t be more in love with or be more proud of his two girls and I no longer have to try and be positive because we ARE positive about our life now and in the future.
NB. Thankfully the Don’t Screen Us Out Campaign group are working tirelessly to improve how people are told the news and what help there is available for them. Beth and I marched to parliament with the group to make sure the voice of those directly affected by DS is heard in the debate. I have also had the privilege of speaking to midwives at our local hospital with another PSDS mum about our experiences and how they can improve their services. I will also be starting work with BLISS in the coming months providing extra support for parents on the neonatal unit. Beth has literally changed the course of our life and this new direction is so exciting.