On Unit: April – May 2020
Gestation: 25 weeks
Below, Michelle kindly shares her daughter Freya’s story with us.
‘Freya was born away from home at James Cook University Hospital, Middlesbrough. She was 15 weeks early, delivered by emergency c-section due to me having severe pre-eclampsia and HELLP syndrome. She weighed just 1lb 3oz/ 560g.’
She initially did really well and was coming down on her respiratory support and taking feeds well. But at 11 days old she developed Necrotising Enterocolitis (NEC) and needed emergency, life-saving surgery. She was transferred to ward 35, Newcastle RVI where 10cm of bowel was removed and she was given a stoma.
We went through various trials and traumas after her surgery from difficulties feeding again, fluid loss through the stoma, weight loss, morphine addiction, to more severe difficulties like respiratory arrests. We lost count of the times she de-saturated and turned a nasty shade of dark blue/purple. But eventually, she was well enough to be transferred to Leeds LGI which was nearer to our home in York. She even spent a few weeks in York SCBU before having her stoma reversed back in Leeds at 3 months old.
Her second surgery went much more smoothly but seeing her being wheeled off to theatre brought back terrible memories of that first, emergency surgery where we were told she might not make it. Thankfully, the recovery was quick too.
All in all she was in hospital for 114 days. She had 6 admissions/transfers across 4 hospitals. Each with its own challenges to face. All of this was made harder as Freya was born 3 days after the first Lockdown started so our 4 months in hospital were more challenging due to Covid related restrictions and limited visiting.
We went 5 weeks without being able to hold her or cuddle her which was heartbreaking. Most of the time we weren’t allowed to see her together and she was 10 weeks old before we got a photo together as a family.
The staff at every hospital were amazing, angels in fact and it would have been so much harder without all their support. They cared for us as well as our baby. We made friends with and received vital support from other parents at each hospital and we keep in touch with some of our ward 35 friends now.
Freya came home on oxygen but came off this 2 months later and has done well without it since. She’s 19 months old now, is really well, eats very well and is such a happy little girl. She’s started nursery and is thriving.’
How did Tiny Lives impact your time on the unit?
‘Tiny lives funded a clinical psychologist for the ward who really helped me during our time on ward 35 and encouraged me to take care of myself better in order to be able to look after Freya. I needed that permission at that time.
They also provided practical things like toiletries, food, drinks and snacks and even funded a hotel stay for my husband as he couldn’t stay on the ward with me while we waited for accommodation nearer to the hospital. They provided a well-being pack for us and also a book for us to read to Freya.
One of the things that really sticks out for me is the Miniboos. Freya had one and so did I. We swapped them every day so while apart, we could have each other’s scent. I slept with it, smelling it to smell my baby. Freya still sleeps with one now and it’s her comforter.’