As part of Sands Awareness Week Finding The Words campaign, Clare shares her story about her son, JoJo and how friends and family help support her and husband, Ryan.

"My name is Clare and I live in South-West London. I got married to a wonderful man named Ryan back in early October 2022. We got pregnant in April 2023 after trying since that January. I had the easiest pregnancy and we found out at our 20 week scan that we were having a boy. We were all so excited about this news!

However, our dream soon turned into a nightmare when, back in early December 2023, at 33 weeks, I noticed that our baby had stopped moving. We then went for a scan and were given the devastating news that there was no heartbeat. It was, and will always remain to be, the worst moment of both our lives.

I gave birth to our baby son JoJo 2 days later at Kingston Hospital. (JoJo is the bump name our young nephew came up with. When we found out that our son hadn’t made it, we decided to go with that name instead of using the proper ones we had picked our for him, as we had always called him that anyways, and so it just seemed really fitting to use it permanently - there were other reasons too).

The pain we have felt since losing JoJo has, and continues to be, unimaginable. The grief, fear, shock, despair, anxiety and uncertainty consumes me constantly. In the really raw early days, I cried and cried, and, just when I thought I had no more tears left to shed, I cried some more, our darkest hour. However, beneath the dark, murky feelings, hope and light were always there, piercing their way through the clouds like intermittent shots of light. We found ourselves surviving and having “normal”, joyful moments despite the horrible trauma we had experienced.

At our post-mortem meeting 3 months later, we found out that JoJo had Down Syndrome and this is what had caused the stillbirth. It wasn’t picked up on any scans. When I was 12 weeks pregnant, I received a letter from the hospital informing us that we had a 1 in 5000 chance of having a baby with a chromosomal disorder. We just happened to be that 1 in 5000. 30% of babies with Downs are stillborn. Again, we just happened to be in that 30%.

Since being on this healing journey, the support from our families has helped enormously with our healing. Most of them have said kind and comforting words where needed, encouraging us to keep putting one foot in front of the other, take care of ourselves and live our lives to the full to honour JoJo. These words have genuinely provided us with comfort and solace these last 6 months. I know we will heal as result of family love and support pulling together when it needed to."

Clare has shared some words and phrases that helped her feel supported while grieving.

“Just keep putting one foot in front of the other.”

“He would want you to find happiness.” 

“JoJo had the best life - he only knew love and never knew pain or sadness.”

“It’s just not fair.”

“JoJo will be remembered for ever and be with you forever, but you two must continue to move forward and live your best lives for him.”

 “Better days are ahead.” From a fellow bereaved parent, who understood. 

Friends and family also showed support with small gestures like sending flowers and cards, helping with cooking and cleaning and sending regular messages to check in. One friend invited Clare on her dog walks, which she found very helpful, being in nature and able to chat to someone who was understanding.  

Learn more about the Finding The Words campaign 


Exit Site