Why I’m thanking the incredible staff who looked after our daughter
Andrew Harrison and Jade Moss’s daughter Dottie was cared for on the Paediatric Critical Care Unit (PCCU) at Nottingham Children’s Hospital for almost a year, after being born with a chromosome deletion. Andrew (known as Rew) shares his story with us and explains why he cycled from Skegness to raise money to say thank you in her memory.
Dorothy Matilda Harrison (known as Dottie) was born by Caesarean Section on 22nd September 2021 at Queen’s Medical Centre to Mummy Jade, Daddy Rew and big sister Beatrix. When she was born, she weighed a tiny 3lb 13oz at 37 weeks gestation.
We knew Dottie was going to be different after her 20-week scan, as it showed she had a cleft lip and palate, and she was growing small for her development.
We attended foetal medicine at QMC three times a week and we were told that she would not survive the pregnancy, and that she wouldn’t live beyond a few days after birth, but she proved them all wrong.
After her birth, she was diagnosed with having a Wolf-Hirschhorn Syndrome, a rare genetic disorder caused by chromosome deletion, and Pulmonary Vein Stenosis. She spent seven weeks at QMC Neonatal and then two more weeks at Lincoln Neonatal, before coming home for three weeks.
She was readmitted to QMC after Christmas in 2021 and after a couple of days at home, she returned to hospital in January for what was only meant to be a sleep study, but sadly, she unfortunately remained in hospital for the rest of her short life.
We had a difficult rollercoaster journey with Dottie. She has proved medical science all wrong on so many occasions as she continued to defy them all and keep on going.
She was the strongest fighter anyone had seen. She had a low immune system and seemed to catch anything and everything that was about on the ward all the way throughout her stay.
She survived getting a bowel infection called Necrotising enterocolitis or NEC, contracting Covid-19, Bocavirus, Klebsiella aspiration pneumonia, a virus that was so rare nobody had heard of it. She had to have a scope down her airways, which we had been told would be life-threatening in February 2022 whilst she was having a short stay at Leicester hospitals.
Dottie started to get a reputation from the staff of being sassy and independent. She would love ward rounds and visits from all different medical professionals, the more people who were around her, the more she would smile. However, they quickly learnt to never discuss their plans for Dottie in front of her, just in case she had a different plan for the day or took a dislike with her being known for dropping her sats.
She was always quick to tell them what she felt about them, with a beautiful unique cleft smile to those she liked or turning away from those she didn’t. She was such a cheeky little girl to the staff.
The nurses were amazing in critical care as she loved to have sensory play. Whether this meant lying down and listening to Ed Sheeran. She would dance around and wiggle her stats probe, which would make the nurses come over to her and then she would lay there and laugh at them. The noisier the better, she would shake the bells from her sensory bag or look at herself in the mirror and show off that gorgeous cleft smile.
Big sister Beatrix was absolutely besotted with her little sister. She took all of Dottie's medical needs as ‘just Dottie’ and loved to help me and her mum give Dottie her medicine, changing her bum, choosing toys for Dottie to play with and giving her the best sister cuddles. She longed to take her sister on holiday and do things with her that she sees other big sisters do.
Unfortunately, Dottie began to rely on her breathing mask constantly and this sadly caused her pain and discomfort as well as hiding her beautiful face. We all longed to give her face kisses. On 6thSeptember 2022, Dottie underwent surgery for a tracheostomy, with the hope that she would be able to come home as she was too unstable otherwise.
Despite the surgery going well, it had put a toll on her body and heart that nobody was initially aware of. Two days later, she had two cardiac arrests but defied the odds and her heart started beating again after CPR.
She continued to hold on until14th September 2022, where a further cardiac arrest sadly claimed the life of our beautiful baby girl.
Just the day before, she appeared to be turning a corner and looked better and even woke up to a smile aimed at me and her mum. She turned her head when she was called, as if she this is what we needed to see.
Dottie was and always will be loved by everybody her knew her. Twenty-seven medical staff attended her funeral which was deeply touching. This is the reason why we will forever be grateful for the way we were treated like family in Paediatric Intensive Care and the High Dependency Unit. They supported, laughed along with us, and cried with us when Dottie passed. They’ve even named a playroom after Dottie on PCCU.
To say thank you for everything the team did for us, I decided to cycle from our home in Skegness all the way to QMC. This is a journey I completed regularly, sometimes as many as five times a week, as I was still continuing to work and help care for Beatrix. We want to help update the playroom, ward and provide more sensory items which meant the world to Dottie. This will provide opportunities for families to be together and make precious memories, because for some of us, that’s all we have left.
I’ve just finished the challenge, and I am overwhelmed that I have been able to give a bit back for the memories we have at QMC as we were treated so well. The facilities for parents are great and nothing was too much for the nurses to make us feel more comfortable in a horrendous situation.
It was amazing to have the support of my family, friends and all the nurses, doctors and consultants when I arrived at QMC after 90 miles and seven and a half hours of cycling. I was even able to have a quick shower on the ward before heading home, which was a lovely sentiment.
We wanted to support the Paediatric Intensive Care Unit, because despite having experienced the wonderful Neonatal care, the support given to us throughout our daughter's short life and afterwards has been amazing and we will always be welcome as a family to visit the ward we became so close to.
We are now looking at future opportunities to fundraise, and there may be a longer cycling challenge in the pipeline for the future. Watch this space!
We’re so grateful to Rew and his family for sharing their touching story and for helping to raise money for the PCCU which meant the world to them.
You can still donate to Rew’s challenge by clicking here.