Whitby family supported in The Sick Children's Trust's 'Homes from Home'

Mum, Amy, describes Alexia's story in her own words "In December 2012 I was diagnosed with Endrometriosis, a condition where small pieces of the womb lining are found outside the uterus. Although it is relatively common, it can cause infertility, so when I fell pregnant in April 2013 to say that my partner, Shaun and I were over the moon is an understatement. We were in complete shock and so excited for the new journey that lay ahead of us.

We were thrilled to have our 20 week scan and learn that we were having a little girl and it was an incredible feeling to see our daughter. However we were also informed by the nurse that our baby’s bowel was growing on the outside of her body; she had a condition called gastroschisis.

We were really concerned but the doctors were so lovely and scheduled us in for regular check-ups to keep an eye on our baby which really reassured us. They also scheduled for me to be induced at 37 weeks on the 18 November at Leeds General Infirmary (LGI). The severity of our daughter’s condition meant that she would need specialist care as soon as she was born and we were told Leeds was the best place to be.

We live in Whitby, North Yorkshire which is about 70 miles from the LGI but we didn’t panic about how far away it was because if it was where our baby would get the best possible care, then it was the only place we wanted to be.

However, things didn’t go exactly as we planned and at 34 weeks I unexpectedly went into labour at my local hospital. They were aware of my condition and tried to transfer me straight away to Leeds but there were no beds available. Instead, I had to go to the next closest specialist hospital; the Royal Victoria Infirmary in Newcastle.

Our gorgeous daughter, Alexia was born weighing 3 pounds and 13 ounces. Within four hours of being born she had surgery to place her bowel back inside her body and had a feeding tube put in, so that all the nutrients she needed would get straight to her tummy. Alexia also had fluid on her chest so had to have this drained too to help her breathing. We were so worried, we just wanted to cuddle our new born daughter and be with her but instead she was whisked away from us for treatment.

Shaun and I were scared, and far from home and all our family, so we were comforted when a nurse on Alexia’s ward told us about Crawford House, a ‘Home from Home’ provided by The Sick Children’s Trust. It was reassuring to be given a room in the house where we could freshen up, get some much-needed rest and be close by to Alexia at all times, especially in the first few days when her condition was so critical. It was really upsetting being on the ward all the time, seeing our little girl hooked up to lots of machines and surrounded by lots of other poorly babies. It was lovely to be able to go back to the house and feel the comforts of home and get some peace and quiet to enable us both to be strong for Alexia.

After eight days, we were told that Leeds had a bed for Alexia and we were able to transfer and be a little closer to home. When we arrived in Leeds we were offered a room in another of the charity’s ‘Homes from Home’, Eckersley House, and it was just as wonderful as Crawford. We were able to stay here for the remainder of Alexia’s treatment which was just amazing. It gave us a sense of normality in a situation that was so far from any experience we had ever had. Alexia had further treatment at Leeds including a blood transfusion and surgery so it was vital we could stay close by.

Alexia was in hospital all over Christmas which meant we spent our Christmas in Eckersley House. It was difficult for Shaun and me as we usually spent Christmas with our families with lots of festive activities. To be away from home for the build-up of Christmas and also New Year’s Eve was distressing, but the comforts of Eckersley House made us feel like we were in a home away from home. Family stopped by to visit and it was wonderful to be able to take them back to the house and have a coffee in the cosy lounge or a homemade meal at the dining table – it definitely beat sitting in the hospital canteen!

The house staff were so supportive and made the house as Christmassy as possible. They put up Christmas decorations including a beautiful tree. On Christmas Day we woke up and went straight to the ward to see Alexia. There we got some special news: the nurses told us we could take her off the ward for a couple of hours! We were able to spend some quality time as a family in Eckersley House and could even open her presents with her under the Christmas tree. It’s not how we envisaged spending our baby’s first Christmas but it was very special and will always be a treasured memory of ours.

On 22 January, Shaun and I were finally able to take Alexia home and could start our new life as a family. I cannot overestimate the importance of the accommodation that The Sick Children’s Trust provides. Because of the charity, we were able to be with Alexia night and day and bond with her. Being so close by also gave us the time to help with her essential care like learning to change her feeding tube. Without The Sick Children’s Trust’s support we would have had to pay out for 11 weeks of accommodation costs or face commuting 70 miles each day to see our little girl, both of which would have put us under additional stress. We’d never have coped without them."