Ben’s & James’ Story
Having a baby prematurely is something that never crossed our minds when I fell pregnant back in 2018. Neither was the rollercoaster of emotions we were about to experience. My pregnancy was unbelievably hard. At our 12-week scan, we learned that we were having twins. At our 20-week scan, we were told one of our little boys had spina bifida. We were left with the heart-wrenching decision of whether we brought him into the world knowing how his life would be affected. We tormented ourselves over what we should do but in the end, decided that we could not knowingly put our little one through a life of struggles. In June 2018 we went through a procedure to terminate his pregnancy, one of the hardest experiences of my life.
I kept trying to remind myself of why we believed we were doing the right thing. We named him James. Although we had been told this meant prematurity was a risk for our surviving twin Ben, we were not told much about what prematurity really meant and just nodded along in acceptance. If only we had fully understood… We hoped my pregnancy would progress well for our surviving little one but unfortunately, this was not meant to be. Five weeks later in July 2018, our son made a very sudden entrance into the world. He was born at 27+1 weeks, 3 months before his due date.
We finally got to meet our Ben in the neonatal unit late that night and our journey in having a premature baby began. I remember seeing Ben for the first time and being amazed at how perfect he was and so unbelievably small. Also, I felt so scared and thought: “How on earth is he going to be okay?!” We had all the highs and lows that seem to be quite typical for a premature baby but I felt so isolated at the time. We juggled having time with Ben every day and looking after our daughter Poppy, who was three years old. Like so many, my husband had to go back to work very soon after Ben was born.
Ben went through a lot on the neonatal unit - blood transfusion, head scans, endless blood tests and cannulas. We were so lucky though that Ben had a relatively smooth time. We finally got to bring Ben home in mid-September 2018 after just over 2 months. It was such a relief to finally have him at home with us but the effects of his prematurity were still very much part of our lives. Ben had regular hospital appointments. Unfortunately, he had RSV (Respiratory syncytial virus) and bronchiolitis at around six months old, among other complications, meaning he had to spend further time in the hospital.
Gradually, as time went on, life felt more normal for us. Today, Ben is a happy, healthy little boy. People who meet him now for the first time have no idea about his start in life but I will never forget - those memories and feelings are just part of me. I still see the cannula scars on his little hands that remind me how amazing he is. It is something no one else would notice but every parent of a preemie will understand the feelings that come rushing back.
When it came to Ben’s first birthday, I wanted to get him a storybook so that he could learn about his start in life in a nice way. I saw a few books already out there but I wanted a book that was very child friendly. I ended up writing and illustrating ‘By The Time You Came Home’ for Ben. In July 2022, I’m proud to say I’ve been lucky enough to self-publish the story into a children’s storybook.
I hope others can enjoy sharing it with their little ones, too. I have been really touched by the feedback so far and by hearing stories of how my book is being shared around the world.
Making my book helped me to process everything we went through in having Ben and it has been lovely that something positive come out of our experience. Ben is now 4 years old and I could not be any prouder of him than I am. He still amazes me every single day.
