Tuesday, 26 July 2011
We were just minutes away from the ward.
Our daughter Honor was born in October 2010 and we were discharged from hospital and had a lovely few days at home.
However, on day five of life Honor suddenly became extremely unwell. We took her to our local Accident and Emergency in the early hours and after initial treatment in Addenbrookes Hospital, Cambridge, it became apparent that she had a heart problem and she was transferred by the CATS team to the cardiac intensive care unit at Great Ormond Street Hospital (GOSH) in London.
Once there she was diagnosed with an uncommon defect of the blood supply to her heart (ALCAPA) and since first showing signs of being unwell she had, to our horror, suffered a heart attack. Honor had her first operation at just six days old.
It soon became clear that things were not going to be straightforward and that we would have to be in London for several weeks. We have two other children, four year old Angus and two year old Lachlan, and at this stage we realised that we had to provide some
stability for the boys as well as being with Honor.
We were so grateful when a room became available at The Sick Children’s Trust’s Rainbow House, just around the corner from the hospital. The facilities here made it possible for us to maintain a degree of family life at a very stressful time, something that would otherwise have been impossible, or impossibly expensive. We heard of the charity initially from one of my work colleagues whose daughter had had cardiac surgery at GOSH, but the offer was made by the accommodation office in the hospital.
Our two boys were being looked after by my wife, Fiona’s, parents for the first two weeks of Honor’s time at GOSH but as soon as we moved into our ‘Home from Home’ we were able to have them in London for long weekends. Trips to see Honor on the Intensive Care Unit to read her stories were interspersed with visits to Coram’s Fields, Hamley’s and rides on London buses – something of a novelty for boys from rural Suffolk. Angus even started referring to Rainbow House as “our London home”.
Rainbow House gave us the chance to continue to act as a family, even at Honor’s most
difficult times. Our ability to take the boys to see Honor meant that they appreciated how
unwell she was and that we had to be in London because she needed us there. Their initial
fear of all the tubes very quickly changed to instructing their grandparents that they were
allowed to stroke Honor’s head but were not to touch any of the tubes as they were helping the doctors to make Honor better. We very much feel that being able to involve the boys to some extent meant that the transition to having Honor at home again was something they eagerly anticipated and when that time came, went smoothly.
It was good to meet other parents whose children were unwell in the house. Much
discussion ensued about our children’s respective problems and how we were all coping with the stresses of that time. In particular it helped us put Honor’s health in perspective
compared to some other children and families with major problems.
Knowing that Sandra, the house manager, was there on a very regular basis and that the ward knew where to call us at night was a huge relief to us too. We initially thought that we could stay with Honor 24 hours a day but it quickly became clear that we also needed our rest to deal with each day effectively. Sandra dealt quickly and efficiently with any questions we had about staying there and was a great source of support to us - sometimes a simple smile and “hello” can make the world of difference to a very bad day.
By mid-December, contrary to what we were initially told to expect, Honor had had enough of hospital life and decided she wanted to go home for her first Christmas. Our two boys were of course delighted to be back at home and welcomed Honor immediately as their new special sister. Without the ability to have them with us in London we feel this transition could not have been so easy.
Honor has made an impressive recovery with a significant improvement in her heart and mitral valve function. She may or may not need more cardiac surgery in the future; if that is required we are committed to going back to London and GOSH and are reassured by the knowledge that The Sick Children’s Trust will be there for us once again. We are hugely indebted to them for the care and support our family was given during this most difficult time and can never thank them enough.
Sinclair Gore, Honor’s dad.