The morning after Bessie was born my little 3 year old Binkle came racing into the ward, accompanied by a beaming daddy, excited to meet her little sister. I was rather excited by the giant bag of Kettle Chips and several chocolate bars they had brought me. Bessie was born at 12.21 a.m. so I had spent most of the night not sleeping, and awake with the surge of adrenaline and excitement about giving birth. The confusion I had experienced upon meeting her had subsided and I had spent the night falling in love with this sweet little sleepy girl who did not want to feed much. I hadn’t really questioned the fact that we had been left alone all night and had not been checked upon once by the midwives. I hadn’t realised we hadn’t yet been given our Red Book. The first person I had contact with since we were moved onto the post-natal was the dreaded Bounty Woman who was trying to exploit my vulnerability post-birth and make me agree to parting with lots of cash for photos of baby. Not likely, love.
After Binkle and daddy left to go for a walk in Trent Park, I spent a long time getting Bessie to feed. It just wasn’t happening. A fairly useless woman came and tried helping me with the breast feeding, but realised that something was amiss. After a little while a midwife came along and diagnosed jaundice and explained that they would have to rush her down to the Special Care Unit (SCBU). The next hour or so is a blank. At 5 pm I was called down to the SCBU to meet with a paediatrician to have a chat about Bessie. Upon entering the unit I saw Bessie wired up to a machine, under bright lights and a nurse trying to feed her. Daddy and Binkle were at home having dinner.
I stood in shock as the Doctor explained to me that Bessie had characteristics that were indicative of Downs Syndrome. I had no one to turn to, no one to hold me. No one to tell me that things were going to be alright. I had a Doctor trying to explain to me that my daughter may never walk or talk, but hey, here’s some leaflets explaining the condition and how to apply for disability living allowance. I stood in absolute shock, telling them that no, I didn’t want this, I hadn’t signed up for this. And as I was saying these words, the voice inside told me of course you have signed up for this, you made her. I didn’t even know if I wanted her and I certainly didn’t know if I loved her. All I knew was that my world had been turned upside down, back to front, and inside out, and I just didn’t even know if I could function.
I needed time. I left that room with Bessie in it, and the nurses organised a new single room for me away from the rest of the ward. I had to tell her daddy. That phone call I made was one of the most difficult I have ever had to make in my life. Binkle was rushed to our neighbours for an impromptu sleepover, and Gastropunk came to the hospital. In all the 8 years we had been together I don’t think I had ever seen him cry. He held me and told me that we were in this together and that we would always share the responsibility absolutely equally and that we would do whatever we needed to for Bessie. I don’t think I have ever loved him more than in that moment. He had been eager to have more than one child and I had been happy with just one. He had certainly talked me into another, and must have been worried that I might resent him for this. Now that could not be further from the truth.
I struggled with the diagnosis; we struggled with the diagnosis. It took time for us to realise that she was not Downs Syndrome, but that she happened to have Downs Syndrome. Our daughter, our little girl, just happened to have an extra chromosome that would forever affect the way society would view her. She spent a total of 10 days in the SCBU and in those days I became like a robot. One night spent in that isolated room up on the post-natal ward was enough to make me go insane with the incessant hum of the air conditioning unit, the sounds from the neighbouring ward, the looks of sympathy the midwives had, and dare I say it, but the embarrassment of them. Yes, those very midwives who had left us completely alone and unchecked. They had all known before I did. I am sure they were relieved when I chose to check out and spend my nights at home with my partner and eldest daughter in those bleak first 10 days.
Life in the SCBU was the turning point for me. The nurses there had seen it all before. They knew how to handle me, they knew what to say. They knew my emotional state and what to do when I returned from my lunch break and broke down on them. They were the ones rooting for me when I started expressing my milk, for they knew that meant I was going to keep my baby and had gotten over the worse. As I started producing too much milk and had to freeze batches, they were the ones whooping for joy and encouraging me. The paediatrician who had given me the initial diagnosis became someone interesting to talk to whilst on her daily rounds.
The 10 days in the SCBU gave me the time with Bessie by ourselves that enabled me to process the information. I had a routine. Lunchtimes were spent sitting by The Ridgeway on a bench near the petrol station sobbing into my sandwiches and Mars Bar, imagining scenarios of living with an adult with Downs Syndrome, imagining that my freedom had forever been taken from me, and not knowing how to cope with my baby. The mornings and afternoons were spent watching her sleep under the UV lamps, giving her cuddles so she knew what physical closeness was, changing her nappy and feeding her. In a short time we had progressed from a feeding tube to bottle feeding. And two days before she left the unit she had learned to breastfeed a little. It took 6 weeks and grim determination to establish breastfeeding, understanding that the act of this type of feeding would only help to exercise the muscles in the mouth and possibly aid future speech and language development.
The night before Bessie was due to be discharged, Binkle stayed with her auntie and Gastropunk and I went out for a”celebratory” dinner, which consisted of us mainly crying into our curries at the local curry house and unable to eat much. We were so nervous about the future and whether we were strong enough to deal with it. The first two weeks of her life was very similar to going through bereavement. The last two years have been some of the happiest times I have spent. Not only did we get past our grief, but we embraced our beautiful and delightful little girl with all our hearts. She has changed our lives beyond recognition. I have learned so much about acceptance and unconditional love. This little girl with a learning disability has mastered so many Makaton signs that I have lost count of the number that she regularly uses, has learned to crawl and climb and has had the power to charm every single person she has met.
A diagnosis of Downs Syndrome is really not the worst thing that could ever happen. I don’t understand now why testing for DS is all so negative and why having DS is a bad thing. I do, however, understand how terrifying it is to receive a diagnosis of DS, especially when you have no experience and understanding of it. I am so glad I never knew until she was born, else I might have made a really bad decision. Meeting and loving Bessie has filled my world with happiness and contentment. Now I have two beautiful daughters instead of just the one.