Our 'Home from Home' in London

Our daughter, Alliza-Lily, was just six days old when on 22 November 2011 she was rushed to a local hospital after she had refused a feed, become lifeless with shallow breathing and had turned blue round the mouth. During her six days in the special care baby unit she was diagnosed with congenital hyperinsulinism, which is a rare condition and is caused by excessive insulin secretion. Alliza-Lily was then transferred from the hospital near our home in Corby, Northants, to Great Ormond Street Children’s Hospital (GOSH) in London for further investigations. GOSH's Endocrine Department is the national centre for dealing with this condition. She was discharged about three weeks later on 23 December. After finding out about congenital hyperinsulinism, and after speaking to the Endocrine team at GOSH, we realised how lucky we were that the paramedic, Ian Pratt who attended Alliza-Lily had saved her life by conducting a simple blood sugar test. Through this test, it was found Alliza-Lily was producing excessive amounts of insulin with her blood sugar level reading dangerously low. A shot of glucogen was given and Alliza-Lily’s condition began to stabilise for her journey to our local hospital. In January we were given the opportunity to meet up with Ian Pratt and the ambulance crew who attended her to thank them. We heard about The Sick Children’s Trust’s ‘Home from Home’ accommodation through another parent at GOSH - the hospital had been unable to assist myself and my partner with accommodation. The Sick Children's Trust really helped us by offering us a permanent base at its Guilford Street House during Alliza-Lily’s stay at GOSH. It meant that David and I were able to stay together and be near the hospital, which was only a few minutes’ walk away. It gave us peace of mind knowing we could rest when we needed to and get a decent night’s sleep - just being able to take a shower and wash our clothes benefited us immensely. I think it also helped us to bond with our new-born baby. If we had to travel back home every day to Corby, which is over 200 miles in a round trip, it would have been much more difficult as we would not have been so aware of any little milestones she had made. It was also great to know the ward could call us day or night in our room at Guilford Street House. They didn’t need to ring us, thankfully, but we called them to check in after we had left the ward at night. To have our own private space away from the ward helped us to maintain our sanity at this difficult time and to think about things clearly. The House Manager Tina was fantastic. She was so helpful and a great listener and nothing was too much trouble for her. An absolute diamond! We went straight to the hospital after we woke up and were there till late at night, so we did not really get the opportunity to meet many other families staying at Guilford Street House or make full use of all the facilities. We only knew one family whose daughter happened to be on the same ward. Alliza-Lily still has the condition and is doing well and responding to her medication. We had a follow-up appointment at GOSH at the end of February, which went well, and we have another in June. She will need an MRI scan at some point to ensure her brain is functioning properly and more follow-up appointments at our local hospital. Michelle Walkley, Alliza-Lily’s mum