Esme’s Story, by her mum, Tracy
October is Down syndrome awareness month and this is our very honest story: We fell pregnant very quickly. We had a couple of scares early on in our pregnancy. Luckily, everything was ok and we got to see our teeny little dot on scans at 6 & 8 weeks. At our 12 week scan everything looked good and no concerns were raised. The blood screening, however, I was very nervous about. I told the midwife that everywhere I went there were people with Down Syndrome, and I thought it was a sign. I knew.
She was very rude and said there’s 1:600 baby’s born with ds so why would it be you??? A few days later I received a call from a screening midwife. I don’t remember much of what she said except I had a 1:25 chance of having a baby with Down Syndrome. She offered me a CVS test, which I agreed to, regardless of the risks because there was no way in the world I was having a baby like that! I was very ignorant about Down Syndrome I knew nothing about it and I never needed to know! It had never been in my life, so why would I?
I had the CVS test and couldn’t take my eyes off the screen – our baby moving around with a strong heart beat. I spent the next 3 days in bed, not daring to move, in case I miscarried!! I started googling Down Syndrome, and all I could find were awful derogatory images. 48 hours passed. I knew. Friday 13th April, 4.45pm my phone rang. It was a midwife called Caroline. She told me our baby had Down syndrome…Right there, in that second, the bottom of my world fell out. I sobbed uncontrollably. She then asked if I wanted to know the sex? It’s a girl. She went on to say an appointment had been made to discuss things further with a doctor. I told her I couldn’t have a termination. I just couldn’t. But what was I going to do???
I knew nothing about Down Syndrome. Jamie came home and I couldn’t hide the tears. I asked what he wanted to do and he immediately said he didn’t care and she was his baby!!! The guilt was drowning me! I wasn’t giving him the perfect baby we were expecting, and I grieved through my entire pregnancy. The next appointment came and it was a blur. I was basically given list upon list of possible illnesses and problems that she might be born with. We had another antenatal appointment where I met the worst two doctors ever! One asked me what did I expect – being a geriatric parent (anyone over 35)?! He went onto add that it was unlikely she would walk and talk, and basically not to have any expectations of her having a good life.
The other was regarding my thyroid medication. He said I will have caused my baby further brain damage, as I hadn’t been taking an increased dose of thyroxin. I was completely broken. I was referred to the FMU team and they were amazing! They were very supportive and caring, beyond levels you would expect. They referred me to a mental health midwife, but this wasn’t what I needed. They worked with mums that were struggling with becoming a mum. I was struggling knowing I was carrying a disabled baby.
The next few months were the worst time of my life. How would I look after this child? Would I even love her? At 7 months gestation, I finally found a local Down Syndrome group. They invited us to their summer picnic. I wanted to walk straight passed them, when we got there, crying my eyes out, full of fear. Jamie walked over to them and said hello. We were introduced to a family with twins, one of whom had Down Syndrome. The Dad asked if I wanted to hold Harper, and before I had chance to decline, he’d put her in my arms. I cried looking at her and repeatedly said, “She’s just a baby”. No one had ever told me that our daughter was just a baby!! I think I was expecting some sort of monster.
Meeting Harper lifted a massive weight off my shoulder and, for the first time in months, I actually felt ok. Fast forward a couple of weeks and I was induced at 35 weeks due to my placenta not working properly. 12 hours later Esme Li was laying on me. In that moment I looked in her eyes and thought, “We’re gonna do this! ”The biggest lesson I needed to learn was that Esme would do things in her own time, and this just meant I would have a baby for longer. Babies grow up far too quickly, anyway, so this was no bad thing! When ever I tell someone ‘she can’t’ do that, she does and makes me look like a mug! And it also makes me immensely proud of how clever she is.
She started saying words very early, and by 2 year 10 months, she was walking inside and out!! I naively assumed that, because she has DS, she would just be a happy, smiley, lovely delight!! Well, this isn’t true! At times, she is a mardy, shouty, little nightmare – just like my eldest daughter was at her age! Her confidence is immense. She knows what she wants and will go all out to get it. Esme attends mainstream nursery and is thriving!! She also has swimming lessons and has passed the first 2 badges. She attends ballet classes, and she loves to sing and dance. Her other favourite things are Peppa Pig, dinosaurs and her play kitchen!!It’s OK to not accept the news that your baby will have Down syndrome, and also not be over the moon about it. But if I had found good information, instead of the derogatory images, and was given balanced, all round information, my pregnancy may not have been ruined. I can’t make our story in the beginning sound OK, because it wasn’t.
I feel ashamed of the way I was so ignorant. I still struggle, today, at the things I thought. I think I may mentally punish myself forever. I look at my daughter and it kills me, because she is perfect. I can honestly say she is the best decision I ever made. Esme has filled a gap in my heart I didn’t know was there. She has changed me as a person and I would not change anything about her or our life. If I could go back and tell my pregnant self anything, it would be, “She’s just a baby and she is going to be the best thing that ever happened for our family!”
A rule I now live by: NEVER underestimate Esme!