There are so many things that the team here at Rock My Family aren’t able to write about and we are always so honoured that our lovely readers feel that they are able to share their own stories. Stories that are personal to them and that always stem from the love of their own little family. Today’s post is one of determination and courage from the amazing Sarah whose daughter Amelie was diagnosed with Cerebral Palsy. I’ll hand over to Sarah to share their story.
Five weeks and five days earlier than expected, our beautiful baby girl Amelie was born. My pregnancy had been low risk with no concerns so when I started having cramps the evening before Amelie was born, I put it down to Braxton Hicks. By around 5am and after three calls to maternity triage, we went in for observation. We were told I was in labour and our baby was on its way. Amelie needed a little oxygen after she was born as she was a bit shocked but I got to hold her before she was taken to the neonatal unit for further checks. She was so tiny (5lb 7oz) and beautiful and it broke my heart when they took her away. Her stay on neonatal was fairly uneventful and thankfully just 11 days. Amelie was fully discharged with no need for any follow up appointments. The first few months flew by in that new born haze.
When Amelie was around eight months old, I was concerned that things weren’t quite right. She was quite still (no constant fidgeting or kicking of legs that, after having our second baby, I realise babies do) and had never rolled or attempted to sit up. Her legs also went stiff if she was reaching for something and she had left hand preference. The health visitors dismissed my repeated concerns (not great for a neurotic first time mum!). We finally saw the paediatrician in December 2014 when Amelie was 15 months old. She confirmed what the GP suspected and what I had known (but not admitted) for the past five or so months. That our precious girl was showing very clear signs of having cerebral palsy. She said it probably happened when I was pregnant although she couldn’t say for sure and that we’d almost certainly never know what actually caused it. At that moment I can honestly say that I hated myself. All I could think was that it was my fault. That I couldn’t keep her safe when she was inside me and that I’d ruined her life. I held her tight and just wanted to run away with her, protect her from the world.
I’m not ashamed to admit that I took Amelie’s diagnosis extremely hard. I closed up and couldn’t talk about it to anyone, even my husband. Counselling has certainly helped me to come to terms with it but it’s an ongoing personal battle.
Amelie has a type of brain injury called periventricular leukomalacia (or PVL for short). Broadly speaking, this means that her brain is sending the wrong messages to some of her muscles. PVL has caused Amelie to have spastic diplegic cerebral palsy (CP) so the muscles in her lower limbs are very tight. She can now walk for short distances with her walking frame but she tires very quickly (her physio once said that it’s like she runs a marathon every day). CP affects all aspects of daily life, such as going to the toilet, getting dressed and getting on and off chairs.
We met Amelie’s super physio Aideen in January 2015. She’s been truly amazing. Not only has she helped our little superstar so much, she’s also helped us; guiding us on this journey and providing support when we needed it most. Along with Aideen, we have Jody and Liz (also physios), Jacqui and Carol (specialist nursery nurses) and Dr Stannard, who we like to think of as Team Amelie at the Child Development Unit. They’ve definitely got Amelie’s back and she loves them all! Amelie now has NHS physio most weeks in term time, along with some blocks of hydrotherapy. We’re very lucky in Stockport as the pre-school NHS physio provision is so good. I know of some families who may see their physiotherapist once every six weeks.
We also try and do lots of physio and stretching at home and at nursery (her 1:1 key worker is fantastic), although we have to be very mindful of how tiring it all is for Amelie. We don’t want to risk burn out. The responsibility for this mostly falls on my husband Tom as I work full time and he is Amelie’s full time carer. He is amazingly patient and loving. I feel very lucky knowing he’s at home with Amelie and her little brother Alexander (or Buddy for short!).
Amelie has recently been accepted at Alder Hey Children’s Hospital for a life changing operation called Selective Dorsal Rhizotomy (SDR). You can read all about it here. At the moment, SDR is the only permanent treatment for the spasticity in Amelie’s lower limbs and will give her the best chance at walking and leading an independent life. Unfortunately the operation is only available on the NHS on a self-funded basis so we’re embarking on a fundraising campaign to raise £35,000 for the operation and post-operative therapy and equipment not available on the NHS. You can follow Amelie’s SDR journey on Facebook. Team Amelie is growing by the day!
Amelie is the most determined little girl I know. She has far, far more expected of her than a typical three year old but faces every challenge with such strength and (almost!) always with a big smile on her face. Her tenacity and loving nature will definitely stand her in good stead.
And in the words of Shakespeare “And though she be but little, she is fierce”.
Images by Anna Hardy.