I’m Ashleigh. I live in Carshalton with my husband Mark, our two sausage dogs and nearly two years ago, our daughter Aubrey was born…
We weren’t told Aubrey had Down Syndrome before having her, which is funny considering I had several more scans than usual. Aubrey apparently, was never quite in the right spot. There always seemed to be two sonographers in the room, however despite this, nothing was ever picked up. In fact we were given a 1 in 10,000 chance of having a baby with Down Syndrome, which was maybe not the lowest odds but after speaking with my sister, she told me they were better odds than hers when she was expecting my niece and she was fine. So I had nothing to worry about right?
Aubrey came two weeks earlier than expected. After a scary awakening in the night, rushing to hospital to find I had preeclampsia and placental abruption (Fantastic!), they decided to break my waters and bring on the birth of our baby. Needless to say Aubrey in her usual style, decided to do things her own way, and I ended up having an emergency C-Section. Throughout my pregnancy I was told I was having a big baby. We did not know the sex so I went into hospital believing I was going to be leaving with a large baby boy … instead we had a 4lb 12 oz. tiny baby girl. She was literally the smallest baby I had ever seen. I had packed 1 new born baby grow and the rest where 0-3 months but she was lost in them. I remember feeling sick (my blood pressure kept dropping at the time), worrying about what she was going to wear and staring at the beautiful little face in front of me. ‘At last we meet my darling’.
Unfortunately our joy and wonder was pretty short lived, when a Senior Doctor arrived in our room. He looked at Aubrey, checked her over turned to us and said:
“We are going to be testing your daughter for Down Syndrome”
HOLD ON WHAT?
I remember feeling devastated, crying so hard and looking over at Mark. Seeing his face was the worst. He honestly looked as sad as I felt. This sucks, I thought. I didn’t know anything about Down Syndrome. And even though I could see Mark was disappointed, just as I was a little too, it was then I looked over at Aubrey, saw her little face and I realised she was a gift. The most important one I had ever been given. You see we had waited a while for our Aubrey and so she was extra extra special to me. Mark took a little longer to come to terms with it. I remember a few days after she was born telling him to suck it up and pull himself together (I was so mean) but here’s the thing, I knew my wonderful husband, although finding it hard to come to terms with at the beginning, I knew there was no doubt he would be a fantastic Daddy and together we could take on the world. Our daughter having Down syndrome wouldn’t hold us or her back.
After a week in hospital it was confirmed Aubrey had Down syndrome and we were discharged with a number of leaflets. Aubrey had good hearing and her eyes looked great. They only detected a slight murmur in her heart so we felt very lucky. Three weeks later, however, we were in A&E as Aubrey was going into heart failure. What they had failed to detect was that Aubrey had not 1 but 3 holes in her heart… she was not a well girl. What followed was 7 months in and out of hospital, one more rush to the hospital in the middle of the night and another heart failure incident combined with a few million hospital appointments. Although Aubrey’s heart kept failing she wasn’t considered high risk, which meant the surgeons wanted her to put on more weight before having the surgery. It felt like we were living in constant high alert. I didn’t want to take her anywhere as a slight cold would mean another 2 -3 weeks in hospital. At 7 months old weighing a hefty 9lb Aubrey finally had her surgery. Yippee!! Her holes were going to be closed, at this point the fact that she had Down syndrome didn’t even register, the surgery was a success! Aubrey did have quite a bit of fluid on her lungs but with time this would dry out. We were told to expect a big change. Aubrey’s breathing had been very fast, she would take forever to have her bottle (yes bottle – she was tube fed for a short while but I was always very determined that it wouldn’t be a long term thing). Within two weeks we were out of hospital and it was true, our daughter was different. No longer was she struggling for breath and finding it difficult to eat, drink and even sleep. She was strong and ready to take on the world and she has been ever since.
My daughter has taught me so much already. Not only has she made me a kinder more understanding person but she has made my family a better one. We are all so grateful that we have her. I am not a super mum by any means, we have had some difficult days and I am sure we will have many more (like most families). But I know I am a better person having her in my life.
Every day she shows me just how amazing she is and I feel honoured and lucky that she chose me. She has made us all a little more special. I find that I take more notice, time, effort. I don’t take the small achievements for granted (every achievement is celebrated in our house). I try to appreciate every moment with her because every life is so precious, no matter the number of chromosomes.
I was very lucky to meet a lovely lady at a local group who told me about PSDS and after attending a family meeting, I just knew this was the group for us. Aubrey was automatically accepted, everyone was so warm and welcoming and I was finally meeting Mummies like me, that I didn’t have to explain Aubrey or myself to. I am so happy we are part of the Digbies group and I hope with time Aubrey will make some wonderful friends. I know with the help we receive she will go on to do great things. I’m certain she’s got the potential to do whatever she puts her mind to and how lovely is it to be part of something that knows she can too, that helps Aubrey and myself and supports her in doing just that.