“Remember just how strong you are” - Sara’s story

Sara and her son Ben, who is holding the children's book Sara wrote

Sara takes us through her journey of being pregnant with twin boys, James and Ben. She bravely shares the difficult decision to terminate one pregnancy and her NICU journey following the premature birth of her son.

Ben was born in July 2018 at 27+1 weeks. We’d already had an extremely tough pregnancy in finding out we were having twins at our 12-week scan, then at our 20-week scan being told one of our little boys had spina bifida.

We were then left with the heart-wrenching decision on whether we brought him into the world knowing how his life would be affected. We thought long and hard and tormented ourselves over what we should do but in the end decided that we couldn’t 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’d been told this meant prematurity was a risk for our surviving twin Ben, we weren’t told much about what prematurity really meant and just nodded along in acceptance. If only we fully understood…

Sara's daughter and partner looking at their Ben in the incubator on the unit

Five weeks later in July 2018, Ben made a very sudden entrance into the world - it was all very traumatic. James was born naturally, sleeping as we knew he would be.

Ben was born via a category one emergency caesarean so there was barely time to take in what was happening. I was also under general anaesthesia and I remember finding it so hard to wake up, feeling so comfy in the bed and then feeling my husband stroking my hand.

Slowly I started to become conscious of what had happened. It was so hard to take in at first and realising Ben and James had been born and that Ben was in the neonatal unit.

We met James first, he’d been so lovingly placed in a little basket by the midwives and he looked so at peace. It was so hard meeting him and so many thoughts were going through our heads.

The hospital ended up being a real support for us and allowed me to stay in a room for bereaved parents that night. They gave us a beautiful memory box for James and took his hand and foot prints for us, and some photos of him.

We finally got to meet 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, feeling so scared and thinking, 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 feeling so isolated at the time. We juggled making sure we had time with Ben every day and looking after our daughter who was three years old. Like so many, my husband also had to go back to work very soon after Ben was born.

Sara, her daughter, her partner and Ben, all ready to come home from the unit

We were introduced to Bliss. I remember the pack of Bliss milestone cards sat waiting for us on Ben’s incubator one day and looking up all the amazing support Bliss offer. Every time we got to take a photo of Ben with a new milestone card felt like such an achievement.

The day I walked into the neonatal unit and Ben had moved to a cot, I couldn’t stop smiling.

Ben went through a lot on the 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 mid-September 2018 after just over 2 months. It felt such a relief to finally have him home with us but the effects of his prematurity were still very much part of our lives.

Ben had regular hospital appointments and unfortunately had RSV and bronchiolitis at around six months old, among other complications meaning further time in hospital.

Gradually as times gone on, life has felt more normal for us. Today Ben is a happy, healthy little boy. People now meeting him 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 now.

I still see the cannula scars on his little hands that remind me how amazing he is - something no one else would notice but every parent of a preemie will understand the feelings that come rushing back.

A collage of memories Sara collected from their NICU stay

We still feel very grateful to Bliss too for all the support they offer and their fundraising, like the 300,000 steps for Bliss in November 2021. Ben even joined in on my steps.

When I look back on Ben’s start in life now, I still question how we got through it all. For anyone just starting their neonatal journey, my best advice would be to take it one day at a time. Accept any bit of help from family and friends that’s offered without feeling guilty about it. Be kind to yourself.

Lean on valuable support from Bliss and the amazingly helpful Facebook group ‘Parents of Preemies Support UK’. Collect everything you can for your baby’s memory box - their CPAP hat, their monitor probes, one of their first tiny nappies.

You’ll look back on these in years to come with your little one and remember just how strong you are and what absolute fighters our preemies are.

When it came to Ben’s first birthday, I wanted to get him a story book so that he could learn about his start in life in a nice way. I found a few books already out there but they didn’t feel right to me. I wanted a book that felt very child friendly I ended up writing ‘By The Time You Came Home’ for Ben.

I hope others will enjoy sharing it with their little ones too.

If you’d like a copy of By The Time You Came Home to share with your little one, it’s available on Amazon.

You can also follow By The Time You Came Home on Facebook.