Karen shares her story of the sudden death of her only child Evie and her journey towards finding hope and purpose again

For me parenting has been both a beautiful and painful journey.

My husband and I experienced three pregnancies in total. Sadly, the first was ectopic and the third ended in miscarriage. These were very private losses which we bore largely on our own. In between, however, we had the joy of our incredible daughter, Evie. As soon as she was born we threw ourselves into family life. We established new routines, wondered if we were doing the right things, and watched Evie grow into an amazing little girl with her own quirks and talents.

Our daughter Evie

Evie charmed everyone with her energy, beautiful smile and incredible memory for names. She made people feel very special and drew them into her joyful world. Whilst generally healthy, at 14 months old, Evie had her first febrile convulsion. Over the next couple of years she had quite a few more convulsions, every time she had a temperature. It was very scary to start with but after consulting a paediatrician we were told there was nothing to worry about and she would grow out of them. We learned how to deal with the seizures and just got on with life. In order to have another baby we started fertility treatment. Then, out of the blue, just weeks after Evie’s fourth birthday, our world shattered!

We woke on a normal morning to a surprisingly quiet house. Usually, Evie would be laid in bed saying “Mummy, Daddy it’s time to get up”. As I was getting ready my husband called out from Evie’s room. I rushed in and tried to pick her up but it was obvious she was dead. My blood ran cold and I went into auto pilot, calling 999 and asking for an ambulance and police. I knew the situation would have to be investigated as a sudden death. We were questioned, very sensitively, by a CID officer. Eventually, we were taken to hospital. Then after some time with Evie and the hospital chaplain, my devastated parents arrived to take us back to our painfully empty home. So our journey as bereaved parents began.

Our journey of grieving

My instincts told me that I needed to talk and just keep putting one foot in front of the other. That was easier said than done. Telling people was so hard. Our friends and family were amazing. They were grieving for Evie too. We shared stories. We planned her funeral. All the time I felt the emotional pain physically in my body. We eventually went back to work about two months later, just going through the motions. The post mortem concluded Evie had died of SUDEP (Sudden Unexpected Death in Epilepsy), despite never having been diagnosed or treated for the condition. The questions remain to this day. Should we, could we, have done more?

Finding help

We accessed counselling, at first together, then separately for a few months. We had to acknowledge our grief was different. We also started searching for ways to meet other people who had experienced the loss of a child. We were relieved to find Care for the Family’s Bereaved Parent Support service and were put in touch with a lovely befriender.

We were also pleased to discover that there was a whole support weekend we could attend. It was nerve racking, but frankly everything felt scary at that stage. It was about ten months after Evie had died. From the moment we arrived we felt welcome and although it was painful sharing our story and hearing others tell theirs, we found an immediate connection. We were like members of a club that no one wanted to join, but nevertheless, we were all keen to give and receive support. We learned from others much further down the road in their loss that things could get easier. The presentations taught us that whilst grief will always be with us, life will inevitably grow up around it. This happens in different ways and at different rates for each person. Crucially, we learned there was still hope for us and one day we would find it, for now at least we were surviving.

Hope has re-grown

Now, seven years on, hope has re-grown in our lives and taken us in another direction. After much preparation we adopted two children aged 6 and 8. They have now been with us for almost four years. They are siblings and bring their own experiences of loss and trauma. However, we have found a shared understanding of the pain that has enabled us to bond as a family, in which we are all able to share memories both of Evie and the children’s own birth family.

It has felt impossible at times, but somehow we have managed to carve out a different life. We draw our strength from God, but Evie will always be in our hearts and my memories of her encourage me to keep going.

Following Evie’s death, Karen wrote a beautiful poem ‘An Unwanted Journey’ – click here to read it

Please visit the Bereaved Parent Support website to find out more about our Telephone Befriending service and Support Day and Weekend events 

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