Staying at Rainbow House meant that we didn’t have to decide between being with our sick baby and being there for our other children

Our son Teddy was diagnosed in the womb with hypoplastic left heart syndrome, a rare heart defect which means the left side of his heart did not develop properly in the womb. Essentially he only has half a heart.

After being transferred to Great Ormond Street Hospital in an ambulance the day he was born, Teddy underwent his first open heart surgery at two days old. He recovered quickly and we were allowed home just over two weeks later to spend some time as a family before his next lot of planned surgery at around six months.

On April 23 2015, at seven weeks old and after a few days of seeming slightly out of sorts, Teddy suffered a cardiac arrest in our local hospital, the Luton and Dunstable. It took the doctors 35 minutes to resuscitate him and once his heart was beating again we were transferred back to Great Ormond Street for what would turn out to be a long stay.

Teddy has two older sisters, Kahlen who was six when he was born, and Emmie who was just 11 months old. Once he arrived at GOSH we were told it was unlikely that Teddy would survive and, if he did, he would almost certainly be brain-damaged. With two other children to think about, my husband Alex and I were torn between wanting to be constantly at Teddy’s bedside and needing to look after the girls. Accommodation services at GOSH pointed us towards The Sick Children’s Trust, who offered to house both us and the girls in Rainbow House, just a few minutes’ walk from the hospital.

Rainbow House was a godsend as it allowed Alex and me to split our time between being with Teddy and spending time with our other children. Emmie had celebrated her first birthday in the brief period when we were at home and was still a baby herself, far too young to understand what was going on. Staying in Rainbow House meant that she didn’t have to be separated from either of her parents and we could still do normal things with her, like putting her down for a nap or letting her play in the playroom. We could eat a meal as a family in the kitchen and both the girls could have a bath before settling down to bed.

For Teddy, having all of us staying just around the corner meant that we were close enough to be at his bedside day or night if he needed us, knowing that the ward could contact us via the telephone in our room should anything change. It also meant that Alex and I were able to support each other by being together. If we had been unable to have our other children with us then one of us would have had to stay at home to take care of them, leaving the girls missing one parent and both of us worrying about Teddy and struggling to cope on our own.

Sandra, the house manager, made our whole family feel completely welcome and at ease from the moment we met her. She took the time to get to know the girls, making them feel at home in a strange and stressful situation and offered us help and advice with the local area and with things to do with the hospital. Often she popped into intensive care to see Teddy and to ask how we were doing, always with a smile and a positive outlook. We also met several other families whilst we were staying in the house, all going through their own issues. It was good to be able to talk to people who really understood the heartbreak of having a sick child, and to see friendly faces around the hospital.

Teddy was finally discharged on 14 July, having had more open heart surgery after he began to deteriorate again. Although we have had another brief visit since then, Teddy’s health is going from strength to strength and he is showing no sign of the brain damage that the doctors were so worried about. At six months old, he is a smiley, happy little boy who adores his older sisters and loves to play.

Thanks to Sandra, Rainbow House and The Sick Children’s Trust, we were able to stay together as a family at the time when we needed it most, and Teddy was able to get better, knowing that all the people that love him were never more than a heartbeat away.

Claire, Teddy’s mum