Gemma and Joey never expected to have such a difficult pregnancy. When Gemma fell seriously ill with pre-eclampsia and their daughter, Jade, was delivered early, they were scared for her future. Now five months on and finally out of St Michael’s Neonatal Intensive Care Unit (NICU), they share their story.
“In August 2023, at just 23 weeks pregnant, my blood pressure shot through the roof unexpectedly. My hands swelled and I didn’t feel well, and I knew something wasn’t right. I was checked every two days for two weeks, until we were told I had pre-eclampsia – a serious condition that can make both mum and baby very unwell. Doctors told us our baby would need to be delivered that week and that there was just a 50% chance she would survive – and if she did, a 12% chance she’d have a severe disability.
– Gemma, Jade’s mum
Hearing that statistic was heartbreaking, neither of us could think straight. She was so small and she’d stopped growing. My friends and family tried to ring me, but I just wanted to be on my own and cry.
The doctors then said we would need to decide if we wanted to continue the pregnancy and gave us some time alone.
We went back to the room and Joey tried to comfort me and all I kept saying was, ‘there is nothing to think about. There are no options. She’s our daughter regardless and we will give her every possible chance.’
Jade was born in August at 25 weeks old, weighing just 419 grams – just a little more than a tin of tomatoes.
Our first words were, ‘can you just tell us she’s alive,’ which to our amazement she was – and was kicking away, too.
Words can’t describe our relief that Jade was alive and fighting – but our struggles didn’t end there. At about three weeks old, Jade’s tummy started growing much larger than normal. X-rays showed blockages in her bowels, which could cause her to become very unwell if it continued. Doctors cut into her tummy to investigate what was wrong. She heard her very first song while travelling for surgery.
We were moved from Southmead Hospital to Cardiff Hospital – and eventually to St Michael’s NICU. We didn’t care how far we had to go, as long as Jade got the help she needed. At this point, Jade was about seven weeks old, and her tummy was still very swollen and she wasn’t able to drink her milk.
Doctors told us a hole for a stoma needed to be formed to help get rid of the blockages in her bowels and help her keep as many nutrients from her milk as possible. The stoma saved Jade’s life – it meant she was able to feed again.
She now has a scar across her tummy from the stoma – she was such a fighter through all the surgeries and treatments.
The staff in NICU were heroes, absolutely out of this world people. You have to be a special person to work in NICU.
When you’re in the unit, you’re in this little bubble, protected from the world outside. The staff there, and the other NICU families, all start to feel like your family and your support network. They laugh with you through the highs and support you through the lows – and always help you see the light at the end of the tunnel.
We used the Cots for Tots music therapist, which was amazing to watch. Jade really enjoyed it – she’d open her eyes and listen to the noises and music. It was beautiful to see how she responded to it.
Jade was given several Cots for Tots Miniboo comforters and loved the weighted hand. I used the ‘Your NICU diary’, funded by the charity, every single day. I want Jade to read it back when she’s older and see what a warrior she was.
Gemma, Jade’s mum
Jade would cuddle and cling onto her Miniboo when she was in the incubator. It brought me so much relief, knowing she was being comforted by my smell on the Miniboo.
Being in NICU with Jade was life-changing. It’s not a start of life I’d wish for anyone, but me and Joey made sure to enjoy every second of it with Jade.
Jade defeated her odds at birth and has overcome three major surgeries, infections, blood transfusions and bumps along the way and has shown how strong a tiny, premature 14oz baby can be. My little fighter! I believe anyone can overcome anything with the right help and support if a premature baby can fight for her life the way she has.
I write this as she is still in hospital, doing amazing and guzzling her milk down. After a long 19 weeks in hospital, we’re finally taking Jade back to our home in Bristol for good in just two weeks.
I hope Jade’s story can give other parents hope and comfort to see it doesn’t matter how small or premature they are, they can still beat the odds.”
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