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My Pregnancy Fears
At the end of September 2024, I found out I was three months pregnant.
I remember feeling so many emotions all at once. Happiness, excitement, disbelief — but underneath it all was a fear that I couldn’t simply switch off. I knew the next few weeks weren’t going to be easy because Huntington’s disease runs in my partner Jake’s family.
When I spoke to my midwife and explained our situation, she referred us to St George’s Hospital in London. Within days, I was receiving phone calls from the hospital, arranging appointments to discuss having a CVS test. (Chorionic Villus Sampling)
A question that could change everything
The CVS test could tell us whether our baby had inherited the gene for Huntington’s disease. Suddenly, my pregnancy felt very different. While other expectant parents were choosing baby names, imagining nursery rooms and getting excited about meeting their little ones, we were faced with a question that could change our entire lives.
At our first appointment, I felt completely overwhelmed. I felt lost, emotional and terrified of what the future could hold. There were so many thoughts running through my mind, and so many questions that nobody could answer yet.
Weeks passed, and I still hadn’t had the CVS test. Time was running out, and with every day that passed, the anxiety seemed to grow.
Eventually, I was booked in for the test.
When we arrived at the hospital, I felt sick with fear. I knew that this tiny procedure could give us an answer to something that had been hanging over us since the moment we found out I was pregnant. I tried to stay hopeful, but deep down, I was terrified of what we might be told.
Then came the longest week of our lives.
The day we got the results
A week later, we were called back to the hospital for the results.
My mum came with me and Jake that day. Having her there meant more than I could ever put into words. We were all about to hear news that could change the future of our family forever.
I remember sitting on the train on the way there, talking about baby names and imagining what our baby might be like. For a moment, we allowed ourselves to think about all the beautiful things that come with pregnancy.
But the negative thoughts were there too — and, if I’m honest, they were much louder.
When we arrived at the hospital, it felt like we had been waiting for hours. Eventually, we were taken into a room. The doctor came in and asked us if we were ready to hear the results.
The room suddenly went completely silent.
My heart felt like it was beating in my throat. I could barely breathe. I remember looking at Jake and my mum, knowing that whatever the doctor said next could change everything.
Then the words came.
“I’m happy to say that your baby will not inherit Huntington’s disease.”
We burst into tears.
Not tears of fear this time, but tears of pure happiness, relief and gratitude.
Jake and I, my mum and dad, and my parents-in-law had all spent so long carrying the fear of what that moment might bring. We had all worried, hoped and waited together, knowing that the result could change the future of our family forever.
And then, suddenly, it was over.
The weight we had all been carrying for so long was lifted in an instant, replaced with overwhelming happiness, relief and tears of joy.
After weeks of uncertainty, fear and imagining the worst, we finally had the answer we had been desperately hoping for.
Our baby was going to be free from Huntington’s disease.
And it wasn’t just the three of us who felt that overwhelming relief. Ruby’s grandparents were absolutely overjoyed. They had been worrying alongside us, hoping and praying for the same result. Knowing that their granddaughter would grow up free from Huntington’s disease brought them a happiness and relief that is impossible to describe.
Our beautiful Ruby
A couple of months later, our beautiful baby girl, Ruby, was born.
And suddenly, all those sleepless nights, all the fear, all the appointments and all the waiting felt like a distant memory.
Ruby is now 16 months old, and she is loved more than she will ever know.
She will probably never understand just how much her parents, her grandparents and everyone who loved her worried, hoped and prayed for her before she was even born. She will never know how many tears were shed before we even got to meet her, or how much her little life meant to all of us before we had even seen her beautiful face.
But Huntington’s is still part of our story
But there is something that will always remain in the back of our minds.
While we received the wonderful news that Ruby is free from Huntington’s disease, her dad, Jake, is still living with an unanswered question of his own.
Jake is still 50/50 as to whether he will inherit the Huntington’s disease gene. His own future is something that we cannot yet know, and that is a fear we still carry with us every single day.
We have had the relief of knowing that Ruby will not have to face the uncertainty that Huntington’s disease could have brought into her life, but for Jake, that uncertainty still remains.
There are days when we try not to think about it. We focus on our family, on Ruby growing up, on making memories and enjoying every moment together. But sometimes, the fear creeps back in.
We still live with the worry that one day Jake may develop Huntington’s disease.
It is a difficult thing to carry, knowing that the person you love could one day face something so devastating, while having no way of knowing what the future holds. But for now, we choose to focus on what we do have.
We have each other.
We have our beautiful daughter.
And we have a family who has stood beside us through every appointment, every worry, every tear and every moment of hope.
Ruby’s story began with fear and uncertainty, but it also brought us the most incredible happiness.
She is our beautiful girl, our little miracle, and a constant reminder of just how precious life is.
And although we cannot control what the future may hold for Jake, we will continue to face it together, as a family, with love, hope and strength.
Our beautiful Ruby, free from Huntington’s disease, loved beyond words, and the happiest part of a journey we will never forget. ❤️
Every Huntington's Family has a story.
Different families, Different Journeys. One disease that touches generations.