Dad Tom feels incredibly grateful and lucky to have his two children. But he is particularly thankful to have his young daughter Katie in the world, after she needed lifesaving specialist care shortly after she was born.
Here, Tom Winrow shares the story of Katie’s birth, her treatment at Saint Mary’s Hospital and tells us why he’s incredible grateful to all the NHS staff…..and Phil Neville!
It was a complete shock to find out we were having Katie. A big surprise, but a nice surprise. Our eldest Jude was only 11 months when we found out and 20 months when Katie came along.
She was five weeks early but other than that everything had been fine. She was born at our local hospital near our home in Bolton on a Saturday – 19th June 2021. But we soon realised she wasn’t taking a feed properly, she was put on oxygen to help her. Katie was sent for specialist care, my wife Hollie was on the floor above in recovery and I was sent home to get some rest and tell Jude he had a little sister.
But at 3am on the Sunday I got a phone call from Hollie. She was really upset and said something was wrong and I had to come back to hospital straight away. A really nice doctor gently explained that Katie had CDH – congenital diaphragmatic hernia. Usually it is picked up on scans in the womb, but hers had been so small and developed quite late on so it had gone undetected.
[CDH is a serious condition that develops while a baby is growing in the womb. Organs end up in the wrong place, as they pass through a hole in the diaphragm and squash against the lungs. It affects each baby differently but most will need help to breathe when they are born. You can read more about CDH on our hospital website here].
In the first two or three weeks of Katie’s life, some of what happened was a complete blur. But that memory of looking at the scan and realising what had happened to her is crystalised in my mind. You could see it was all wrong.
There were two possible specialist hospitals they could send Katie to, but I must admit I’d never heard of Saint Mary’s Hospital so I was a bit apprehensive about going there. But when the team from Saint Mary’s turned up there were two ladies and they could tell Hollie and I were just completely shell-shocked. They kindly explained there would be lots of wires and tubes and things going on and it would look scary, but they wanted to let us know what to expect. They were really good at explaining it all.
Katie went in the ambulance to Saint Mary’s Hospital and I followed behind in the car while Hollie was still recovering in our local hospital. By the early hours of Sunday morning, I arrived in Manchester and Katie was heavily sedated on the Neonatal Intensive Care Unit (NICU).
We were assigned two nurses called Charlotte and Hollie and I will never forget them – they were absolute superstars. I was also given a Father’s Day pack when I arrived. I’d completely forgotten it was Father’s Day as everything had been such a whirlwind.
Everything was pretty scary but having Charlotte and Hollie there was so reassuring and they looked after us so well. On the Monday Katie had her operation and they let us go down with her in the little incubator. Then I drove home and had to just wait for the phone call.
I don’t think the severity of what was happening to us really hit home until the surgeon told us the operation had been a success. Before that I was on autopilot and couldn’t speak to anyone about what was going on. I just needed to get through things without having to repeat them and explain things to our family and friends.
After the surgery I drove back to Saint Mary’s and there she was, my little girl, with this great big scar all down her rib cage. Pretty quickly I realised how lucky we were – the surgeon explained that for a CDH case the problems were actually relatively small. He said in the best case scenario she would probably never be an Olympic athlete, but in the worse case scenario we’d be looking at oxygen to help her breathe and feeding tubes and this was something we’d just discover as she grew up.
As it happened, the football team I’m part of had organised a charity game in the early July. Katie was still in hospital when the match happened and we’d been planning to do it for an arthritis charity, as I’d recently been diagnosed, but we decided to change it and fundraise for Saint Mary’s Hospital Charity instead.
I’d previously got quite down about having arthritis and did have moments where I’d really felt sorry for myself, but after what Katie went through I saw things with a bit more perspective.
When Katie became a bit better we moved to another room at Saint Mary’s and there was a baby in there with bunting all around. It was a little celebration for “100 days in NICU”. When I saw that I just thought “oh no, is that what we have to prepare for?” Mentally, we had to get our heads around her staying in there a long time but in the end it was just 13 days.
We felt so lucky and I know some families have it so much worse. You see what people go through and some of the things that can happen to babies is just awful. But going home was terrifying too – we wouldn’t have all those doctors and nurses around us and I was scared that something would happen. Saint Mary’s was our safe space. At home we questioned everything.
Everyone at Saint Mary’s was absolutely incredible – the nurses, the surgeons, everyone involved in Katie’s care. They’re not just treating Katie, they’re doing the job of counsellors too.
I’m also incredibly grateful to Phil and Julie Neville, and that’s a funny one to say as a Bolton fan! The parents’ accommodation unit at Saint Mary’s, where we stayed, is named after them in recognition of all the fundraising they did for the NICU. The accommodation was amazing for us – when I couldn’t sleep, knowing I could just go down the corridor to see Katie was amazing. I’d love to thank them personally one day.
In the meantime, Katie is at home now and doing well. She is a little behind in her development – her first steps were at 15 months – but she’s doing things in her own time. She’s at nursery now too and loves it.
She has been in hospital a couple of times since leaving NICU – she’s had gastroenteritis so we’ve had stays at our local hospital and at Royal Manchester Children’s Hospital. My wife Hollie and I are both teachers, so unfortunately we get all the bugs going and Katie has had quite a few nasty ones. But battles on and smiles through it all.
We hope Katie’s story can give other families hope if their child receives a similar diagnosis.
She now loves climbing all over the sofa with her brother. She’s also fascinated with instruments. We have a little kazoo but she hasn’t quite figured out you need to blow down it. She loves the noise though.
We’re continuing to support the hospital. I recently did a Three Peaks Challenge with some friends. Of course we happened to pick one of those boiling hot days in August 2022. I’m surprised none of us got ill with heat stroke or sunburn that day!
I definitely want to carry on doing things to support Saint Mary’s Hospital Charity. I’m so indebted to them. I need to think of something to do next year to raise funds, so watch this space!
Update: Tom has now set up his JustGiving Page for a new Land’s End to John O’Groats cycling challenge.