• Louisa Stanley

The Roller Coaster of Parenting a Child with a Disability

(THE UPS AND DOWNS... SOMETIMES LOVING THE THRILLS AND SOMETIMES YU WANT TO GET OFF)

Triggers: pregnancy, miscarriage, depression, neonatal, loss, grief, disability



When growing up, I always longed to be a mum but had a feeling in the back of my head that it would never happen. So imagine my excitement when in 2015 I found out that I was pregnant. Everything seemed to be going smoothly until the 12 week scan. We went along with no concerns to be told that something was very wrong; the consultant soon came in and then took me for further tests. They concluded that the baby had cystic hygroma (a build up of fluid around the body) that would most likely grow and I would suffer a miscarriage. Consequently, the following few months were very tough, having regular scans and miraculously the fluid gradually decreased and a miracle had happened – all now seemed fine but they were a little concerned about her size. I was induced at 37 weeks thinking everything was normal. Unfortunately, I feel incredibly disappointed in the lack of care in hospital and this resulted in Anna being born face first, all battered and bruised and she had to be taken to neonatal due to breathing difficulties. She was only 4lb 8oz so she also needed to put on weight.




The roller coaster was well and truly underway by this stage. To finally have the baby I had always longed for in my arms, for her to then be taken away was heartbreaking. Fortunately, I was able to stay in the hospital and I had my own room so I was able to go up and visit her in the early hours when I felt alone. I just wanted to cuddle her but I couldn’t – I just wanted to feed her but I couldn’t – I just wanted to help her but I couldn’t! Little did we know that this was only the beginning of our bumpy journey through parenthood.




After 10 days in neonatal, Anna was deemed well enough to return home. Everything seemed perfect – we had our baby girl home and she was well and gaining weight nicely. Things were good – we started to go to every group going and we met some amazing friends. It didn’t take me long to notice that Anna was different to all the other babies – at first I put it down to being smaller and having to catch up, but then she wasn’t meeting the milestones that other children were. She didn’t respond to the same stimuli, she would get upset easily, her body moved in different ways and she was unable to roll, or sit up. This was particularly noticeable in swimming, where she would lock her arms back and not put them in front. Luckily we had a great health visitor who was very supportive and referred us to a paediatrician.

At about 9 months old it was becoming clear that Anna had significant difficulties – we were told that it was likely that she had a syndrome but we may never find out what it was. This was heart breaking and we went down various routes to get a diagnosis – thinking this would solve all our worries. During this time, we found great support through the SWAN charity (Syndromes without a name) and we are still involved with them today. Eventually through analysing our bloods and comparing it to Anna’s, a diagnosis was found when Anna was 3 and we were called in to see the geneticist. Anna had Pitt Hopkins Syndrome – a rare genetic syndrome affecting only approx. 4 in a million. To hear this, the roller coaster came crashing down. I think in the back of my mind I was hoping that it was all a mistake and they’d got it wrong, but looking at the characteristics – it was Anna completely.

From this day onwards, we were thrown into a whole new world. Although we felt lucky to get some answers, there was a real element of grief. We went through (and still go through) various stages of denial, isolation, anger, depression and acceptance. It really was like grieving for the child that you no longer had – the expectations of how motherhood would be had completely changed. One of the hardest things was not to compare to other families, but even now that is so hard not to do. It takes a lot of energy and strength to bring the focus back to our family and the wonderful daughter that we have. It’s fair to say that this is an ongoing process and both myself and Anna’s dad went through these at different points, which compounds the feelings. We soon got involved with the Pitt Hopkins UK charity, and this helped us feel less alone on the journey.



Anna is now five and we have good times and tough times. It’s true that the good times are really good but the bad times are really tough. The simplest of things makes us so proud – like using 2 hands to hold a ball, making a new sound, walking with less support but we do get some challenging behaviour due to her learning difficulties and lack of communication. Recently we have seen increased anxiety in new or loud situations, and head banging. This can be very distressing to watch. We don’t know what the future holds for Anna and this makes our days tough – will she ever walk? Will she be able to communicate? There are no answers – we just have to be patient and wait and see, taking each day at a time and not looking too far ahead. Despite all our struggles, Anna has a way of bringing the best out of people. She has a remarkable ability to make others smile and I believe she has been given to us for a reason – she demonstrates strength and determination and makes us appreciate the simplest of things in life. I feel blessed to be chosen to be her Mum. As a teacher I feel more empowered and passionate about inclusion and celebrating differences. I encourage the use of Makaton across the school and making communication accessible for all. Also, without Anna we would never have met some of the amazing people that joined us on this journey…. from amazing children, inspirational parents, such great charities and a select group of remarkable people that just understand. In a world of struggles and negativity, Anna has allowed us to see the good in people and help us to make the world a better place. To conclude, this roller coaster has definitely had its twists and turns and there’s certainly more to come, but by staying strong and being honest with ourselves and others we know we can have an exciting future. I’m sure Anna will continue to amaze us and make us proud. Thank you to everyone who continues to support us.



LOUSIA STANLEY



My name is Louisa and I am a Mum to a daughter with a rare syndrome. Anna is 5 and was born with Pitt Hopkins Syndrome. As part of this, she is non-verbal and can only walk with support. I have struggled on and off with anxiety and depression throughout the last 6 years and I hope this post will help others in similar situations.