Evangeline Renee Williams
November 15, 2024
On September 25th 2023 at our 20 week antenatal scan we received unexpected news that our baby had a heart defect. I was upset but never once considered a genetic reason and assumed at worst our baby might need heart surgery after she’s born. A week later we were flown to a specialist appointment where we had over an hour long scan followed by a grueling wait to discuss the findings with a doctor. There were several anomalies identified on the scan the worst being a severe heart defect of HRHS. We opted to do an amniocentesis to find out exactly what our babies diagnosis was. We made it clear we would continue on with the pregnancy no matter what. The next day we got a phone call telling us our baby had Trisomy 18 (Edwards Syndrome). We were told our baby would most likely live less than a week or pass before birth.
It has been almost 11 months since Evangeline was born, she was and is our first born. We got 24 beautiful, joy filled hours with her, followed by the worst heartbreak of our lives. The first 6-7 months after her loss were filled with deep grief. I felt like I lived in a joyless, grey world. A world where everyone around me had families. It felt like every other day someone else was celebrating the birth of a healthy baby. But slowly in the past several months I’ve felt some colour return to my world as well as some joy return. I have wrestled with my faith and God met me in this place of wrestling and lamenting. He patiently waited until I was ready to talk to Him again and I got to know the God who is familiar with grief and suffering. I learnt that I am not in control of my life, nothing I did, no amount of prayer, or research or fighting changed the outcome of Evangeline’s story. My husband and I grew closer as we learnt to make space for our polar opposite ways of grieving. I needed to talk about it daily, he preferred to keep busy and not talk about it because it was just too painful. I shared openly, he kept things private. We learnt that we can get through deep heartache together without losing our love for each other. Evangeline made me brave as I faced so many fears and learnt just how strong I am. I have greater empathy and awareness of how difficult the road to parenthood is for so many. I now not only sympathize with grief but I’ve lived it and now my heart breaks with those who are broken hearted. I experienced a love so deep for a little girl who I only held in my arms for 1 day. How much more does God love us. I know my Evangeline is now safe in the arms of Jesus.
I would go through it all again just for the one day I had with my baby. I know I did everything within my control to give her life. I have no guilt or regrets. These babies are so incredible, they are little warriors who each have their own story. It gets easier with time. You don’t ever move on after a loss but with time you will move forward. Allow yourself time to grieve, take the time you can. I had 4 months off work and spent that time grieving deeply. Grieving is horrible but ultimately it brings healing. Find outlets. I joined a bootcamp and in the early months it was one of the few things that got me out the house a few times a week. I ended up getting a lot fitter and faster too and added in running to my fitness routine.
I had not heard of Edward’s Syndrome before getting our diagnosis. The first thing I did was look up support groups on Facebook. When I connected with Verity’s Village, I was blown away that they would send a care package all the way to New Zealand. Reading Beverly’s book felt like reading my own story. I felt so seen. I knew I was not alone even though we are on opposite sides of the world. It was so helpful having people who knew what I was going through to talk to and process everything. Kathryn answered lots of my questions regarding Evangeline’s specific diagnosis. Patricia and Allan counseled us and helped my husband and I understand our differences. Beverly prayed for us constantly. Other mums offered advice, support and comfort. It made a lonely, scary journey a little less lonely and a little less scary.
If you want to read more of my story I wrote a blog which I’ve added to over the past year: https://evangeline-renees-story.blogspot.com/2024/01/how-much-is-little-girl-worth.html