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Being at Chestnut House made me feel less alone, because being the parent of a sick child is very lonely.

News   •   Jan 06, 2017 10:40 GMT

Rosie was born six weeks prematurely

The Sick Children’s Trust is close to my heart as I am one of the thousands of families the charity has helped. The story I am going to tell you is a personal one; full of great happiness, intense trauma and uncertainty.

Our story began in January last year when my daughter Rosie arrived six weeks prematurely. After a long five days of labour I gave birth to the most beautiful baby girl I had ever seen, she had the bluest eyes, pinkest lips and her skin was like porcelain. I genuinely couldn’t believe the beauty I saw before me…and she was my daughter!

We managed to say a precious hello before she was whisked off to the neonatal intensive care unit (NICU). Minutes later, despite saying I needed to stay on the ward, the midwives were suddenly taking me in a wheelchair to see her and even though everyone was walking with me telling me how beautiful she was, I knew something was wrong.

The head of NICU said that she needed emergency surgery as she had been born without her bottom, her insides weren’t connected and she wasn’t able to feed. Alarm bells started ringing in my head – surgery? My beautiful daughter couldn’t have surgery. She was so tiny and too fragile! This would be too much for her… was she going to die? All these thoughts whirled about my head… All I wanted was to take my baby home. But I was told she would be rushed to either The Rosie Hospital in Cambridge or Great Ormond Street Hospital while I stayed behind at Watford General Hospital. We would be separated.

As a parent, there’s an innate force within you, propelling you forward that says you must be there and you must protect your child. I felt I was failing as her mother and it was only her first day in the world.

My baby’s survival was at risk and I had to make the quickest decision of my life and chose for her to go to Cambridge. Fortunately, Rosie didn’t have to face that scary journey alone at just a few hours old as she had her daddy with her, but for me those hours when I was separated from my beautiful baby were some of my most desperate times. I was poorly too. I hadn’t slept for three nights and had had a number of complications which resulted in a huge loss of blood.

It had been nine hours since I’d seen my baby. I had no idea where Cambridge was, it was cold, it was late and I was physically and emotionally drained, but I refused to be away from my daughter. I was worried where I might stay; my mum and dad were taking me and we were thinking about where we could book a hotel.

But when I walked in to The Rosie Hospital I discovered The Sick Children’s Trust. Everything was so clean and white and I remember thinking ‘I’ve walked into heaven!’ We were given a room where we could stay at a place called Chestnut House – just minutes from Rosie. I cried with relief. The enormous worry of finding somewhere to stay evaporated. I could be there for Rosie and I didn’t need to leave…because of The Sick Children’s Trust. Chestnut House was warm and homely. There was a communal kitchen which my mum filled with home-cooked meals, we had our own beautifully decorated room with nice clean sheets, where I could express milk as there were breast pumps available – and we even had an en-suite so we could shower and feel fresh to help us face the days ahead. In Chestnut House there was everything – small things that you take for granted. But when your life is thrown into turmoil you realise how vital these things are.

The Sick Children’s Trust made it possible to get through this trauma – the minute I saw the room my mental capacity to cope increased tenfold. The Sick Children’s Trust did more than that though. I was very ill, anaemic from losing so much blood and thanks to this charity I could stay at the hospital and get the treatment I needed when Rosie was asleep.

Thanks to The Sick Children’s Trust, our tiny baby’s hand was held for longer, she was cuddled more, read books and given words of encouragement round the clock. She was never alone. All of which helped our daughter have better and faster recovery because we were there to make her stronger.

Before Rosie was a day old, I was told she also had a hole in her heart. I knew she was facing a battle bigger than some people face all their lives. When she went down to theatre – which lasted the whole day – it was unbearable. It was comforting talking to other parents in Chestnut House. Chestnut House is so much more than practical support, it supported me emotionally too. Living in the same place as other parents going through a similar situation was like being in a bubble. The other parents knew exactly what you were going through, you didn’t have to explain what a feeding tube was or how the noise of the monitors was ringing in your ears every time you lay down to try to sleep. They didn’t say things like ‘give them a cuddle from us’ because they knew that you probably couldn’t pick your baby up and if you could you had to ask permission – that was one of the hardest things for me as a new mummy – having to ask permission to hold your own baby. Each parent at Chestnut House helps the other…you never had to pretend everything was fine. Being at Chestnut House made me feel less alone because being the parent of a sick child is very lonely. Having a new baby is incredibly hard work for anyone, but with a sick child it is even harder…you are up more, you sleep less, you attend numerous appointments, deal with mountains of paperwork and all the while look after yourself less. You become a walking, talking medical dictionary of every statistic about your child. Being able to talk to other parents made all the difference to me.

Since that first stay at Chestnut House, Rosie has had two subsequent operations, and each time The Sick Children’s Trust has never failed in being there for us. I remember one of the doctors saying to me that it was good to be staying so close to Rosie, as to be with your child by their hospital bedside all the time, you know them better than anyone.

So what is the end to our story? This time last year our lives were in complete turmoil, I worried Rosie wouldn’t survive, that her body couldn’t cope with all it was being put through. But she’s here, and she’s doing so well. I have my resilient warrior…a beautiful, funny, kind, sensitive toddler who thinks she is almost two going on twenty two!

We’d like to say thank you to The Sick Children’s Trust. Thank you for everything – from our emergency admission, to cleaning our room, to the chats to check we were OK and for having us back for all our others stays. Because of this charity, I knew someone cared.

I dream that every hospital in the UK will have an office with a sign above the door that says The Sick Children’s Trust and that no family will ever have to face their child being in hospital alone. But sadly, all over the UK there are families who are booking hotels, somehow finding money for things they did not plan for, and travelling to and from hospital every day for weeks and spending unnecessary time away from their very poorly child.

So, I am asking everyone who reads my story to think about making a donation and help a sick child have their mummy or daddy by their hospital bedside this Christmas. What The Sick Children’s Trust provides is not just a bed or somewhere to stay, it is the support when you need it most, and it is the recovery of a young person who has their whole future ahead of them. The Sick Children’s Trust helps babies and children recover faster. It helps families suffering with trauma; it alleviates parents’ physical and mental anxiety, practical worries and concerns.

Without the room at Chestnut House, Rosie wouldn’t have had the essential breastmilk which helped her immunity, I would not have been able to have the treatment I needed and still see my daughter in the first days of her life. The Sick Children’s Trust made me stronger so I could be stronger for my baby.

Katie Kennedy, Rosie’s mum

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