It was a monumental moment of strange normality and respite
I looked at my daughter. Molly had only been in this world for eight weeks yet had gone through more than some people do in their entire lives. She was lying there in a hospital bed attached to countless tubes, wires and machines as she recovered from open heart surgery.
Paul and I had found ourselves in Great Ormond Street Hospital (GOSH), London, four weeks after our daughter was born in the middle of the coronavirus pandemic. We were staying at The Sick Children’s Trust’s ‘Home from Home’, a place we had been offered as our daughter was prepped for theatre which meant we didn’t have to leave her side.
Everything had happened so fast and was completely unexpected.
A week before my due date a scan revealed there was less amniotic fluid than expected and I was booked in to be induced five days later. On the day, Molly’s movements had slowed and therefore I was taken for a caesarean. Up until this point there was nothing that suggested that there were any problems, the only thing that had happened during my pregnancy was that I spent two weeks in hospital when I was 16 weeks pregnant in January with pneumonia and sepsis. In hindsight we wonder whether I had actually contracted the coronavirus.
Molly arrived in the early hours of the morning in June 2020 at Bedford Hospital, but she was very pale and floppy and only let out a few cries. Thankfully Paul was there, right by my side, despite the restrictions around birthing partners due to COVID.
It was clear Molly needed specialist medical help and was stabilised and prepped to go to Luton, where there was an intensive care unit hospital cot. I was with her as soon as I could get enough feeling in my legs to stand. Her haemoglobin (a substance which transports oxygen around the body) was extremely low which meant she didn’t have many red blood cells and therefore she had a blood transfusion before the transfer and another transfusion once at Luton.
She spent a week in Luton where they stabilised her blood condition and confirmed her heart problems. She had a large 8mm VSD (hole in the heart) and an ASD, a smaller arterial defect. We were transferred back to Bedford and liaisons with GOSH began as she needed heart surgery.
Over the next few weeks, Paul and I were allowed to take Molly home while we waited for a date for surgery but her condition deteriorated. It was very stressful for both her and me as she had a feeding tube but was keen to breastfeed. However, when she’d feed she was simply burning too much energy which was dangerous for her heart so I had to express. Evening resting became a problem.
It wasn’t long before we found ourselves on the high dependency unit (HDU) in GOSH. We expected a long stay in London. I recall my anxiety whilst on route in the ambulance of where we’d stay, what will happen. Though having said that, thinking about ourselves was the last thing we thought of. Fortunately, we barely had time to allow for worrying as everything was sorted and we were told we would have somewhere to stay. We would have slept in the car to be with her.
I was aware of The Sick Children’s Trust, however had no understanding of what it did until our visit to GOSH. Rainbow House is one of the charity’s ten ‘Homes from Home’ it runs around the country. There are three in London which offer families like us a place to stay just a few minutes’ walk from their child’s hospital bedside. Rainbow House was an incredible support and in hindsight afforded us the space to process everything and be rational at an extremely emotional time. Our daughter needing major surgery at such a young age was a lot to take in, but the addition of the coronavirus and restrictions also had an impact. We were fortunate that at that time GOSH was allowing two parents on the wards but the virus was an overarching worry. Wearing masks was heartbreaking when wanting to cuddle and interact with our baby. Communication with nurses and doctors was hard. All the natural facial expressions and cues we rely on as humans were really impaired.
Rainbow House gave us the time and space to come to terms with what was happening and process all the thoughts, feelings and worries we were having. Being able to stay close to our daughter and be together was the most valuable thing. Having a ‘home base’ between consultations and interventions really helped and meant keeping a regular breast pumping routine was more manageable with facilities such as fridge/ freezer and cleaning. When we first arrived, due to the risks around the virus, the kitchen area was closed however towards the end of our stay it was reopened and we cooked and ate dinner on a couple of occasions. It was a monumental moment of strange normality and respite. Not only that but Tracey, the House Manager, was so accommodating and supportive which meant a lot.
After spending just over a week on the HDU and in intensive care, we were allowed to bring Molly back home. Ever since her surgery she is a changed baby. No longer in heart failure, breathing normally, feeding well and now thriving. Follow up appointments have confirmed she is doing well and should now continue to live a full life. We are so grateful for all the support from everyone involved in her care.
Esther became critically ill last Autumn. She had a rare virus and was also diagnosed with SCID, she spent three months in hospitals across the country. We gave her parents a place to stay so they could be right by her side.
Every year we help almost 3,800 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.