Lee-Anne & Adam’s story

A few days after my birthday in November 2020, I had my 12-week scan. Excited and nervous, I had to go in alone in a mask due to COVID. I was told during the scan that something was wrong, but they were unsure what. I saw a little one moving around and a healthy heartbeat. I’d even felt some flutters. I was poked and prodded for what felt like hours, holding back the tears as the room was silent. It felt like some kind of weird dream. I called my husband Adam and told him.  

We were sent away for a week to process things, and our world turned upside down from that day. A week later, I had a scan and we were told our baby had a rare neural tube defect and would not survive on the outside world. We were faced with a decision. A decision that no one would ever want to make. 

We were given some time and a booklet, which, at first, I threw in my bag. How could a leaflet help? How could a leaflet understand what the hell we are going through? How could a leaflet help me go through this without my family, with no chance of seeing them? How could it help me go through this in a global pandemic? How can I give birth and hear other women giving birth to living babies whilst I walk out of a labour ward with just a memory box with little hand and footprints? How could it bring my baby back?  

The next day we opened it. It was full of supportive, useful words and the realisation that we weren’t alone. I contacted someone via email as I wasn’t ready to talk to anyone about it. I could write or type for days, but talking on the phone or face-to-face was/is crippling. The lady was so helpful. I automatically felt understood and that it wasn’t something that I did or didn’t do. In fact, these things happen to many parents, but it’s kept hush-hush by many due to shame, guilt, or feeling like people won’t understand.  

On the 22nd of November, I gave birth to our beautiful girl, Clóda Rose. We were lucky to be able to hold her and say goodbye. We then had a long wait until the funeral on New Year’s Eve. Again, due to COVID, we were alone.  

Since then, ARC has been a safe place for me and parents who have been through similar things. There is no judgement, and no question is too much. People on the other end are a lifeline for so many; there are also forums for other parents to discuss their own personal experiences.  

There are many parents that go through this and have nowhere to turn from diagnosis to the funeral, post-mortem results and grieving. It is and still continues to be a long and painful process for us. Some days are so tough it’s like a fog that appears from nowhere, and you are floored.  

ARC can shine some light where there is so much darkness. I couldn’t have got through so much without their support.