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