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She weighed half a bag of sugar, but against the odds our miracle daughter survived

News   •   Feb 11, 2016 12:52 GMT

Last Christmas our little girl turned one and wow it’s been a tough 12 months. Amelia was in hospital for 179 days, after being born weighing just 1lb 1oz – just a touch more than a bag of sugar. She was tiny and was immediately rushed off to the Neonatal Intensive Care Unit (NICU).

We knew that Amelia would be early; we found out at our 20 week scan that there was something wrong with her stomach and oesophagus. Fortunately, when she was born this actually wasn’t the problem. This wasn’t what led her to a six month hospital stay in The Rosie Hospital, Cambridge. It was the fact she was born prematurely just short of 27 weeks and her blood flow had been restricted during pregnancy.

I barely saw Amelia when she arrived. As soon as she was delivered she was taken away. My baby was so small. Unless you’ve seen a baby that size, you won’t understand the emotional turmoil that travels through every inch of your body. How could someone so tiny possibly have enough fight in them to survive?

It was terrifying to see her in NICU with what seemed like huge machines towering over her and surrounding her to help her stay alive. We just had to keep reminding ourselves that all these scary pieces of equipment were there to help her live.

The day after I had Amelia I was discharged from the ward and it was at this point we were introduced to Chestnut House. This was a huge relief as it meant that my partner, Allan, would be able to stay with me. This helped me a great deal emotionally as on the night I had Amelia I was left on my own because he couldn’t stay on the ward. This was one of the loneliest times, and simply the time I needed him the most, but he couldn’t be there with me.

Chestnut House changed this and made it possible for us to be together and support each other during this difficult time. Even though your child is up on NICU, you can't spend 24 hours a day, seven days a week there. It was nice to be able to come back to either sit in your room, relax in the living room and just chill and rest if you could. If you were going back and forth every day, you wouldn't be able to do that, you wouldn’t have that luxury.

The facilities at Chestnut House were second to none. There were expressing machines to use, a fridge to keep your breast milk in where you could collect it throughout the day, and as Chestnut House was just directly below the ward, it was just a quick walk to Amelia’s bedside. Chestnut House has everything and you really appreciate it - even the littlest things like having a kitchen sink - you’d never think about the practicalities and the need for these things, until you don’t have them.

It was Christmas time when Amelia was born so it could have been very complicated and traumatic for Allan’s son, Alfie. Christmas was spent not as we expected, to say the least, but it wasn’t an unpleasant experience. Lots of our family came to visit, checking Amelia and I were ok. And on Christmas Day, the family decided I needed a break from the hospital environment, so after saying Merry Christmas to Amelia, Allan and I went to my parents for dinner. The hospital environment is very isolated, all you think and do is hospital-orientated and it is emotionally and physically draining. But knowing we had Chestnut House made the reality of hospital so much easier – it was somewhere warm, friendly and homely. And when we did return to our room on Christmas Day, there were two bags of gifts – something we didn’t expect that at all. It was just so thoughtful and meant so much for us, so this year, I will do the same for another family.

We moved to Acorn House when Amelia went onto the Paediatric Intensive Care Unit – another of The Sick Children’s Trust’s ten ‘Homes from Home’. Acorn House was incredible, the kitchen was huge and there was a lovely gathering space for families. This ‘Home from Home’ had lots of families staying whose children were in hospital for different reasons, and it was comforting to speak to others in similar situations about their experiences.

Amelia finally came home in the summer; she’s very settled and is doing really well! We still have a future operation to go at Great Ormond Street Hospital next year, but she’s got through this year. And if she can get through this year, she can get through anything.

And she’s now a healthy 15lb!

The Sick Children’s Trust’s ‘Homes from Home’ give you everything you need, which means you worry less about what you need and can really focus on your child’s recovery. The most important thing.

Leanne Webb, Amelia’s Mum

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