Our son Thomas was born in October 2011 with a rare and very complex congenital heart abnormality. When he was born he was immediately transferred to Great Ormond Street Hospital for major open heart surgery. Three weeks later, unable to get him off life-support he underwent another even more complex surgery which he barely survived. His recovery was tough but at two months we were finally able to take him home, just in time for Christmas. He had spent the majority of that time in intensive care. About a year later he had another open heart surgery from which he recovered well and in January 2015 he underwent his final ‘planned’ surgery.
During his first three operations we were given a room right by the hospital. The rooms were clean and extremely convenient, very functional with basic communal facilities. We rarely saw other parents; they tended to stay in their rooms or were by their child’s bedside. The hospital is only able to offer them to parents while their children are in intensive care. Once they move to the ward – which could be for months - one parent is allowed to sleep on a pullout bed by their child. Both parents cannot be accommodated.
Living in the hospital and being by your child’s bedside 24/7 is enormously stressful and is one of the most anxious experiences a parent can have. Doing it alone, with broken and interrupted sleep and invariably poor diet is even worse. Many parents live far from London and once their child is on the ward one parent has to return home, leaving no opportunity for either physical or emotional respite for the parent remaining with the child. In a particularly bad period, on a ward full of newborn babies, I didn’t sleep for three days and was close to breaking point.
When Thomas came in for his last surgery in January 2015 we were not sure how we would manage. He had a baby sister Ruby who had never been left with anyone and we had no family nearby. He was now three years old and able to clearly articulate his feelings about his experience in hospital. We were dreading it. We were expecting I would have to care for Thomas entirely on my own, through the operation and intensive care while his dad stayed at home with Ruby, as the hospital’s own accommodation couldn’t take siblings.
When we arrived however, we were incredibly fortunate to find there was a room at The Sick Children’s Trust’s Rainbow House. This meant we could stay together as a family.
Sandra, the House Manager, welcomed us with open arms. A cot had been set up in our lovely comfortable room for Ruby. Everything was designed to make us feel at home, soft carpets, pristine cotton sheets and fluffy towels. The lovely communal sitting room had an adjoining well-stocked playroom which Ruby took full advantage of. Best of all was the wonderful kitchen and big dining table. We could prepare healthy home cooked nutritious food, for ourselves and for Thomas on the ward if we wanted. This was the heart of the house, where we would meet other parents who were all in the same situation. Often one parent was alone during weekdays while the other had to return to work. It really helped for them to have other people to talk to about their day, let off steam and seek support from others in the same position. We were able to share experiences, offer advice and tips on hospital life and always know there was someone to commiserate with you after a difficult day and share in your joy after a good day.
We quickly settled into a routine, we would take it in turns looking after Ruby away from the hospital while the other stayed with Thomas and we would each sleep on the ward with him on alternate nights. This allowed us to get a good night’s rest in a comfortable bed in Rainbow House every two days, have good food and a bath, do laundry and so on. When Ruby got ill and couldn’t go into the hospital my mum flew over from Switzerland so she could look after her at home. She could occasionally bring her up to visit me during the day and we could play together in the playroom. When she and Thomas started to feel better, Ruby became an essential element of his recovery. The two are inseparable and when they were both too poorly to see each other they had missed each other badly. Now for a few hours a day they could play together in the playroom on the ward or in his room and then we could get her back to Rainbow House round the corner for a comfortable nap in the afternoon. In the evenings she would sleep upstairs while we had a relaxed dinner together downstairs with the baby monitor before one of us would head back to the ward to spend the night with Thomas.
After a few ups and downs with his recovery, we were sent home to convalesce. 6 weeks later, Thomas was fighting fit and raring to get back to nursery. It was as if he’d never been away. He’s put all the trauma of the operation and hospital behind him and speaks of it very matter-of-factly. For the first time in his life he is no longer cyanotic – with blue lips and nails – he never stops running around. He’s very proud of his scar and shows it off at the first opportunity. His classmates are very impressed and think he’s extremely brave. He is the kindest, nicest and most generous child we know and often think that his difficult start in life is the reason he is so positive and happy, as he appreciates how lucky he is, since he’s experienced how bad life can be first hand.
In June we finally Christened Thomas along with his sister. This was not only a Christening but a celebration of Thomas and the journey he and the rest of the family have been on. We invited all our friends and family and it was a wonderful party. Instead of gifts we invited guests to make a donation to Rainbow House since we wanted in some small way to thank Sandra and The Sick Children’s Trust for making such a positive impact on our family at such a difficult time. We were delighted when guests donated a huge £308 which we know will be put to good use. Every little thing at The Sick Children’s Trust houses, from toilet paper, towels and washing up liquid has to be bought with donations so we know the money will be well spent.