If we couldn’t stay at Rainbow House I don’t know what we would’ve have done
Florence was a fit and healthy 18-month-old until one weekend when her breathing became laboured. We called an ambulance and were rushed straight to our local hospital in Bedford where her condition deteriorated quickly.
The doctors couldn’t work out what the problem was and while they were running a number of tests, Florence had a cardiac arrest. We thought we’d lost her and slowly that devastating reality began to set in. For three minutes the doctors tried to resuscitate her and thankfully brought her back to life. Soon after we were rushed to Addenbrooke’s Hospital in Cambridge where they discovered our daughter had a heart condition where blood isn’t pumped around the body effectively. Florence was kept on a ventilator while she recovered from heart failure and the damage that had been caused to her other organs when her heart stopped.
In Cambridge we found out about The Sick Children’s Trust and the amazing work the charity does to give families with a seriously ill child in hospital some stability in their day-to-day lives by supporting them with a free place to stay close to their child. My partner, Dave, was able to stay at its ‘Home from Home’ Acorn House just minutes from the ward Florence was on. I stayed at home to look after Florence’s older sister Scarlett as I was really struggling to cope with the situation and the fact that Florence might not pull through. Dave stayed there for two nights before Florence was transferred to the Cardiac Intensive Care Unit at Great Ormond Street Hospital (GOSH) where she was attended by a heart specialist to continue her treatment for heart failure. We live an hour and half’s drive away from GOSH but we were able to stay at another of the charity’s ‘Homes from Home’ called Rainbow House.
I didn’t know anything about The Sick Children’s Trust but it is absolutely incredible. Being able to stay just a two minute walk from Florence’s bedside took away all the extra stress of how we were going to be with her. No matter if she was in Cambridge or London, because the charity had given us a place to stay so close to the hospital, we could be by our daughter’s bedside throughout everything.
We were in London a lot longer than Cambridge and got to know the staff a little better, who are amazing. Tracey and Tina were always checking in to see if there was anything we needed and they helped to reassure and comfort us on the days we were uncertain and scared.
Being able to stay at Rainbow House was invaluable and it became a real base for us and our family. Dave would stay at the house while I stayed at home with Florence’s older sister Scarlett and sometimes my dad, Kevin, would go down to help Dave and stay over. Then we’d switch and me and my mum, Christine, would travel and stay down so that we could all be there for Florence while also looking after Scarlett.
Rainbow House was not only a place to sleep but somewhere we could go to get a much needed break from the ward. I feel a bit guilty saying it, but I really looked forward to the time in the evening where I could go back to the house, cook dinner and just have some time watching tv. It’s extremely difficult to see your child wired up to so many machines and I especially found it difficult when Florence was sleeping as there was nothing I could do for her to help her. My mental health suffered quite a bit so having somewhere to go to have a break and recharge was so important.
Talking to the other families staying at Rainbow House was also an amazing benefit as there was always a support network of people who knew what you were going through. We’ve made friends as a result which has helped us to process everything. I remember speaking to one family whose daughter had the same condition as Florence. Unfortunately their daughter required a heart transplant which was terrifying as I thought Florence would need one too. Luckily, she didn’t but being able to talk through what we were going through and the possibilities was so important.
Without The Sick Children’s Trust I really don’t know what we would have done. It would have cost us at least £40 a day to travel on the train or we would have had to pay out for a hotel and there is no way we could have afforded that either. Because of Rainbow House we didn’t have to worry about any of the travel or financial burdens and we could just focus on Florence getting better.
We were staying at the house right when the coronavirus pandemic happened and the country went into lockdown, which would have made travelling to be with our daughter impossible. We weren’t able to stay on the ward or even visit properly because the virus meant it was closed to families. Rainbow House gave us the extra days we needed until Florence was transferred out of intensive and Dave was able to stay on the other ward. The charity bridged the gap for us and made sure we could always be with Florence. I have no idea what we would have done without its support.
Florence is doing amazingly well now and you wouldn’t have a clue that anything had happened to her. She is still on a lot of medication to support her heart function and needs regular check-ups at GOSH as she continues to recover, but she is doing great and not showing any signs that anything was ever wrong. The doctors are still testing to see whether Florence’s condition was caused because of a genetic fault or a virus, but it is all quite daunting as I had no idea that either was capable of causing such a threat to her life. We owe the charity so much and when things return to normal I will definitely being doing some fundraising so that more families can stay with their seriously ill child.
Every year we help families by giving them somewhere to stay near their seriously ill child’s hospital bedside. Sign up to receive our email newsletters to stay up to date with how your support is helping to keep families together.