Only 1 in 3,500 babies our born with our daughter's illness...

Our daughter Lily was born in August with Tracheo Oesophageal Fistula and Oesophageal Atresia - a condition which is rare in the UK with only 1 in 3,500 babies born with it. The condition meant her oesophagus joined her windpipe instead of going to her stomach. Lily was rushed from Colchester hospital to the Rosie hospital immediately after she was born as she needed emergency surgery. Lily’s operation was a double fistula which we were told was quite rare, so we were very nervous about the outcome, but the neonatal surgical team managed to remove the fistulas from the trachea and join the two ends of the oesophagus. The result was positive but meant she could only feed through a tube through her nose into her stomach. On top of this her condition means her windpipe isn’t strong so it keeps collapsing and she finds it difficult or is unable to breathe at times. When we arrived at the Rosie hospital we initially stayed in hospital parental accommodation but this wasn’t ideal and we were relieved when we were told about The Sick Children’s Trust, a charity that provides free accommodation to the parents of sick children whilst they are being treated in hospital. We stayed at its Acorn House for two weeks from the 28 August. We were then transferred back to Colchester hospital for a month before returning back to Cambridge where we stayed once more with The Sick Children’s Trust. This time we were able to stay at their new ‘Home from Home’ Chestnut House, which caters specifically for parents such as us who have a very sick baby. We stayed at the house from the 1 to the 9 October and it was a godsend for us. It’s an incredibly stressful experience to have a baby in hospital. To then have the added stress of being away from home was very difficult. As a new mother you are continually told to look after yourself, eat well and get sleep, but this is practically impossible living in a hospital. Being given the room at The Sick Children’s Trust’s Chestnut House for that week meant we had the facilities to cook a proper meal and have a comfortable bed to sleep in whilst still being only minutes away from the neonatal intensive care unit – this was a massive relief and eased some of the anxiety we were feeling. Having the opportunity to speak to other parents in a similar situation sometimes was a help too, but we also had the option of just locking ourselves in our room for some peace and quiet at the end of a difficult day. I couldn’t bear being away from Lily but at the same time it was important for us to step out of her hospital room and get some rest time away from the NICU wards. We have since been back and forth between Colchester and Cambridge numerous times. We were finally discharged from Colchester hospital on 6 November so our dream came true and Lily has been at home with us for a couple of weeks now. We will have to go back to Addenbrooke’s Hospital every month for the foreseeable future for Lily to have her dilatation. At least it will only be for a few days and Lily can be at home with us in between. We know now about the wonderful charity, The Sick Children’s Trust, and we know that should we need to call on them again during these visits we can. Jessica Moore, Lily’s mum

Acorn House was like a haven for us.

On 6 September of this year, our family was very unfortunate to be involved in a serious car accident caused by a foreign lorry driver driving on the wrong side of the road. Our 6 year old daughter Ella was in the car at the time and thankfully suffered just minor cuts and bruises, but our youngest daughter Maisie who is 15 months old was also in the vehicle and sustained serious injuries, including several fractures to her skull causing damage to her brain and several fractures to her left leg. We were initially transferred to The Royal London Hospital from the scene of the accident, but it was Addenbrooke’s Hospital in Cambridge that was to become our home for the following month. It was whilst Maisie was being cared for in the Paediatric Intensive Care Unit at Addenbrooke’s Hospital that we were made aware of The Sick Children's Trust and the facilities they provide to families who find themselves in similar situations to ourselves. Within a few hours of Maisie being transferred into the Intensive Care Unit (ICU), the Ward Clerk had arranged for us to be introduced to Joy the House Manager of Acorn House. Joy confirmed that she was in a position to offer us a room at Acorn House for the duration of Maisie's stay in the ICU, which was such a relief for us knowing that we could stay so close to our daughter as home for us is Colchester, which is at least an hour's drive from the hospital. Acorn House was like a haven for us. We could not believe that we were able to stay in such a beautiful house and use all the facilities and be so close to Maisie. We were able to call from our room directly to the phone at Maisie's bedside at any time of day or night, which we did frequently, especially for reassurance that Maisie was ok if we had had to leave her side for any reason. We were able to have our other daughters Melissa, aged nine and Ella, aged six come and stay with us whenever they liked. They were able to play in the house itself and the garden. We also had several family meals together at Acorn House, including other family members and friends who had come to visit Maisie. This was so important to us as it was very hard to be apart from our other daughters and caused a real strain on us as a family, but to be able to be together whenever we could and enjoy a sense of 'normal life' playing and eating and spending family time in an environment which felt so similar to home was very comforting. It really did make our time at the Hospital so much more bearable and The Sick Children’s Trust’s intention of creating a 'Home from Home' environment is in our view exactly what it is. Our time at Acorn House was also made easier by the wonderful hospitality we received not only from Joy the House Manger, but Julie and Jane who also work at Acorn House. At a very difficult time for our family they were there for us with complete understanding and compassion, for which we were very grateful. Whilst staying at the house we also had the opportunity to meet other families staying there. Although our circumstances were not necessarily the same, we had a common bond and spending time with them and sharing our stories and feelings certainly had a positive impact on our experience at the House. We spent the best part of a month at Addenbrooke’s Hospital with Maisie, but we are now home. She is regaining her skills and progressing well and we are confident that in time she will make a full recovery. We were extremely pleased that just before Maisie was discharged from hospital we were able to take her to play at Acorn House and introduce her to the other families that we had met. This really meant a lot to us as it had been our home for the duration of Maisie's stay in hospital and we wanted to share it with her. Obviously this has been a very traumatic experience for our family and we have been through a very difficult time, but in relation to Acorn House itself and the families and staff we have met, we have very fond memories and we really do have The Sick Children's Trust to thank for that, for which we are extremely grateful. Nicola Moon, Maisie’s mum