Our April warrior courageous Cove

Cove’s story is written by her mum Pasha. 

It all started September 2021, Cove our perfect little girl was just 4 months old. Cove was full of a cold and I know it’s not unusual for babies to be unwell, especially as she has an older brother. I noticed Cove’s body began to make a sudden and strange movement, something I hadn’t seen before, and I knew immediately that this was more than just a cold.

I took Cove to the GP to share my worries, and was told “babies make strange movements, it’s nothing to worry about”. But this didn’t comfort me and I couldn’t leave it at that. I took Cove home, feeling frightened and uneasy. Suddenly, nothing could settle Cove and the unusual body movements became more frequent. Her body would stiffen, her arms and legs would bend forward and this would last for several seconds. I began to notice a pattern in these movements, they would happen after every nap while she was waking. I knew my only option was to take her back to the doctor. I was told again to stop worrying and that it could just be reflux or a virus and to give her time to get better.

The next day she had the worst ‘episode’ that I had seen, like the previous times her body would stiffen except this time her body was jerking and fitting so I videoed Cove and headed straight to A&E with the video. I packed a bag ready, I wasn’t leaving the hospital until I had the answers I so desperately needed.

After 48 hours of multiple tests and discussions with several doctors examining the video and also seeing Cove having and episode at the hospital we were given a diagnosis of Infantile Spasms. Confused and worried, I asked myself all the normal questions – What even is infantile spasms? What does this mean for Cove and our family? How and why has this happened to our tiny baby girl? At this point no one could answer my questions, the doctors didn’t even know what this meant for Cove.

I reached out to UKIST, who helped me so much with navigating my worries. They sent me loads of information and the families on there were (and are) so great. Reading other families posts and stories helped us as a family so much, it was a really useful insight.

Cove was given steroids and vigabatrin. She responded incredibly well to the medication, her spasms stopped almost immediately and we were sent home after a long week in the hospital. However, we knew this wasn’t the end, we still had a long and scary road ahead of us, full of the unknown. With the medication come some really horrible side effects and we seemed to have lost all of Cove’s personality and eye contact, not to mention the steroid bloat. Throughout, our Courageous Cove fought relentlessly. Slowly but surely we noticed snippets of our darling girl still in there. Cove started to get back her eye contact and regain her head control. After a few months she was even sitting and rolling alone again. UKIST supplied a Cushi Tush chair for Cove, it helped us so much with feeding and allowed her to sit with us as a family when she didn’t have full strength to do it alone. This girl was determined, her strength was incredible.

Our warrior princess is now 22 months old and  defying all the odds. Cove has been spasm free since the 15th October 2021 and medication free since 15th November 2022. We still regularly see her consultant and the epilepsy team. Cove is reaching all of her milestones and is so full of life and personality. She loves to play, run and climb. She has no fear and joins in with all her big brother’s games, she’s talking so much and achieving more than we ever knew possible. The bravery of this tiny little girl has taught us so much, and we are so immensely proud of her.

So to all the families who may be starting this crazy, scary unknown journey. You are not alone, this isn’t a road anyone knows how to drive down but take it step by step, second by second. Celebrate the smallest wins. Although life isn’t what you thought it would be, it’s still so amazing and our babies are perfect. We are all in this together. UKIST have so much to offer and so much support. Reaching out to UKIST and the families made us feel that we weren’t alone on this journey. We are so thankful to them all.

Our Cove – chaotic, playful, and our ray of sunshine.  She has a strength and determination that runs through her veins. She really is our miracle girl. Our very own warrior princess