My son was in hospital 100 miles away from home, but Rainbow House made sure we were always by his side
When my partner, Andrew, and I went for our 20 week pregnancy scan we were really excited to see how everything was progressing and we were thrilled to be finding out the gender of our baby. This should have been one of the happiest times of our lives but when the nurse said she needed to get someone my heart absolutely sank. She returned with a doctor and after further examination we were told they had concerns about our son’s heart and that we needed to see a specialist at Great Ormond Street Hospital (GOSH). We live in Norwich, 100 miles away from London, but we needed to know exactly what was happening, so we made the trip down.
The foetal cardiologist there identified that Mason-Ray had six heart defects three of which would need surgery to be corrected as they were causing holes between the chambers of the right and left sides of the heart, called AVSD, as well as the two lower chambers, called VSD. Mason-Ray also had a leaky heart valve and all of these conditions were preventing his blood to flow around his body correctly. We were told he would need surgery shortly after birth which would be carried out at GOSH, but for now we could return home.
When Mason-Ray was born he also had two issues with his stomach. One was known as ‘double bubble’ where his small intestine was not connected to his stomach correctly causing both to swell with fluid. The other was intestinal malrotation where the intestines do not form a coil and become twisted instead which can cause blockages. These conditions happen when the stomach doesn’t develop correctly in the womb. It was quite a lot for us to take in having all this information thrown at us about our newborn, but we had to just accept everything and prepare for the surgery he was about to have. At just one day old Mason-Ray was taken to the operating room to fix his stomach. Due to this unplanned procedure, the decision was made to wait a little longer for his heart surgery so he had chance to gain some strength and weight.
While he was recovering from surgery we were shown a lot of the equipment that Mason-Ray would need when he returned for his heart surgery. We even spoke to one mum whose child had recently been treated for a similar heart condition who told us about her experience and answered any questions we had so we were a lot more prepared. This made things a little easier and reassured us for when we would be back at GOSH.
We were able to take Mason-Ray home after two weeks but he was really struggling to breathe and was vomiting all the time. We were in and out of our local hospital a lot while they monitored how things were developing following his surgery, but the length of our stays were increasing each time. We were still waiting for Mason-Ray’s heart surgery as well and this was completely sprung on us after a cancellation made a space available. We were rushed from our local hospital to GOSH and two days later Mason-Ray, at two months old, had the surgery to fix the problems with his heart. As he was going down for his surgery we were told about The Sick Children’s Trust and informed that we had a room at Rainbow House. Parents cannot stay with their children while they are recovering on the intensive care units and during Mason-Ray’s first surgery we had stayed at the hospital’s accommodation. This time we were able to stay at The Sick Children’s Trust’s ‘Home from Home’ and it was such a huge benefit for us to be able to stay close to our son without having to worry about travel or hotel expenses. While the accommodation at GOSH was also such a big help it was nice being able to leave the hospital when we went to Rainbow House and have the comfort of our own bedroom and the communal living areas really made it feel like we were in a ‘Home from Home’.
Without the ‘Home from Home’ we would’ve had to pay for a hotel and there is just no way we could have afforded that, which meant we wouldn’t have been able to stay with our son. Staying at Rainbow House took all this worry away and meant we could see him whenever we needed to.
Mason-Ray’s heart surgery was successful and for the week he was on the intensive care unit we stayed at Rainbow House. All of this was during the pandemic but luckily the rules had been changed at this time so both me and Andrew could visit him on the ward. It was so important that we could stay together at the ‘Home from Home’ to support each other and the staff were also really caring. They always asked how Mason-Ray was and how we were doing and that support really made a difference to making us feel more comfortable about the whole situation.
Mason-Ray was then moved to a ward where I could sleep by his bedside so we left Rainbow House and Andrew stayed with family. We then returned home and Mason-Ray has been doing really well since. His breathing is better and he hasn’t been rushed back in for a post-op check which is really encouraging. The doctors have no major concerns with his health and he is progressing as he should. There are a few other abnormalities with his bladder but we have been told they aren’t anything to worry about and have been caused by his previous stomach conditions. He will continue to be monitored but hopefully won’t need any further treatment or surgery. It is amazing to see him getting on so well and we will always be grateful to The Sick Children’s Trust for keeping us by his side.
Having supported countless families with children needing transplants over the past four decades, we remain determined to ensure that the subject of child organ donation continues to be discussed. In support of NHS's Organ Donation Week 2023, a trio of families have kindly shared their transplant stories.
When one year old Lola Plimmer was transferred by air ambulance from Birmingham Children's Hospital to the Freeman Hospital needing a heart transplant, The Sick Children's Trust's Scott House 'Home from Home' supported mum Ella throughout her time in Newcastle
Born in 2012 with numerous cardiac complications that may never be resolved, Lucas Whitworth has undergone various heart surgeries at Leeds Children's Hospital. Mum Melissa Petrillo shares her story about how Eckersley House has supported her down the years.
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