Changing the world, one step at a time.

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16th May 2018 the day our lives changed for the third time. Our youngest daughter, Ava was born. It was a fairly quick birth after being induced but unlike my other two she didn’t cry straight away and the midwife called for help as Ava needed a little bit of oxygen. I think her quick birth when she wasn’t ready to be in this big wide world came as a bit of a shock to her and she wasn’t quite ready. Each of my three pregnancies and births had been different so I didn’t really pick up on them when I was in the moment. There were a couple of differences following Ava’s birth that now stand out. We were allowed to stay in the birthing pool room for ages after her birth whereas previously I had been whipped along the conveyor belt into the ward. The midwife kept asking if she looked like my other two children, well I couldn’t remember what they looked like as newborns so I didn’t know. I thought at the time she was just making conversation. She was, however asking for a reason. When I tried to breastfeed she would latch on like the others but she didn’t feed fully and her little body seemed floppier. As soon as I’d looked into her eyes and her screwed up little newborn face I knew she had Down’s syndrome but I didn’t dare ask because what if that made it true and at that point, I thought it might just end our world.

I assumed if my thoughts were true then either the midwife or someone else would have confirmed it but no one did. I spent the first night in hospital googling ‘Down’s syndrome’ and comparing my newborn’s ears, eyes, nose and toes with images I found online. She potentially had some of the features but not all. I tried frantically to find old pictures of my other two as newborns to compare her to. She had some similar features and I was just too unsure. Ava still hadn’t fed and I continued to hand express and wipe the colostrum on to her lips. No one had offered any support at this stage, it was mummy instinct kicking in to make sure my baby had some calories. I kept asking the midwife through the night if there was something wrong with my baby but she just turned it back to me asking what I thought was wrong. The next morning the doctors came in; three of them together. My husband had gone to the toilet and I was in a ward with three other families. They asked ‘has anyone told you they think your daughter has some kind of syndrome?’ There it was, my thoughts became reality. They whisked her off for blood tests to confirm their suspicions shortly followed by them telling me that she needed to have an NG tube to be fed milk as ‘these babies don’t breastfeed’. Once we received the blood tests back and her diagnosis was confirmed with the apologies and pity from the paediatric team, my husband and I had a short pity party. We did not know what it meant for our family, how would Ava impact on our lives and our children’s. I quickly got to work googling people with Down’s syndrome who got married, lived independently, learnt to drive. It didn’t take long to realise that Ava could still do all of these things. I knew at that point her diagnosis was not going to define our beautiful girl. 

Despite being told otherwise, Ava did breastfeed. She has clearly inherited her mum’s determination and stubbornness as she will do anything she puts her mind to and anything we’re told will be difficult, she makes damn sure she does it. 

Ava’s big brother and sister absolutely adore her. They have helped her with physio exercises and with her phonics to support her speech. They love to help her. I need not have worried about her having a negative impact on them, they have become much better people for having Ava in their lives. We all have, and not just in our immediate family. Friends and wider family often comment on how Ava has changed them or their lives for the better. 

We do not take milestones for granted, I can’t remember being so proud and excited when Maya and Oscar learnt to walk or started to speak or count. With Ava, we do not just celebrate the milestones but the mini-milestones to get to those are equally as important as we know it takes that little bit more effort for her to get there. 

Yes, Ava has to work that bit harder but at 2 and a half, she has started to walk, overcoming hypotonia and instability in her joints. She uses Makaton to communicate, we all started to learn it as a family within weeks of her birth. I wanted her to be able to communicate with anyone she (& others) needed to so I set up The Snowdrop Story as a platform to share Makaton signs publicly but also to create a social space for children and their families to learn and use signs together. That has without a doubt helped Ava’s signing and in turn her speech, she has well over 30 signs and at least 10 words that she uses independently or alongside her signs. Everyone around her has embraced it and signs with her to ensure she is included. 

Ava has a cheeky personality and a wicked sense of humour. She keeps us on our toes like any other 2 year old. She loves chocolate, reading and dancing, she doesn’t like going to bed if she thinks she’s missing out!

I started volunteering for Positive About Down Syndrome (PADS) towards the end of 2018, I feel very strongly about creating an inclusive society and the first step in that is education. No surprise as my background is teaching, but we need to educate society so Down’s syndrome is no longer something to be feared. I admit that prior to having Ava I did not know enough about Down’s syndrome, I wrongly assumed that because it was something that could be screened for in pregnancy that having a child with Down’s syndrome would be difficult and that our lives would be so much harder. How wrong could I be?! The work that PADS does is invaluable, offering support groups for parents to be as well as providing information to hospitals to try and give them a more accurate and balanced view and to nurseries and schools to help them be able to support and include children with Down’s syndrome better. 

There are so many positives to have come out of Ava’s birth, not least the amount that I have learnt over the last two and a half years. Ava also inspired my third and fourth children’s books. Ava the mermaid was written as a story to help children understand that we can and should include each other despite any differences we may have. Ava the mermaid goes to hospital is based on our family experience when Ava had heart surgery and the emotions they felt and how we dealt with that. It was written during the first lockdown as part of a charity project to support children through the lockdown period. If these stories, inspired by her have an impact on even one person then they have been worth it and my little girl will continue to change the world for the better one step at a time.

Written by Eleanor Baggeley.

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