The charity gave me the one thing I needed as a dad at that moment – to be with my son
Noah was a gorgeous boy who loved his brother, Theo, more than anything in the world. He would always be smiling or giggling when Theo was about. He loved life and was a strong, determined little pickle who fought as hard as he could for the nine months we had him.
Noah’s birth was traumatic and we thought this was the reason why he had swelling all over his body. But at two weeks old, the swelling hadn’t gone down, so we took him to Eastbourne Hospital where he was put on oxygen for suspected bronchiolitis.
The next thing we knew we were being transferred to Hastings’s Conquest Hospital, 45 minutes away from home. After five days of treatment for bronchiolitis, Noah was taken for scans and not long after, we were taken to a family room just off the ward. Noah didn’t have bronchiolitis. An X-ray revealed something much more serious – Noah had a hole in the middle of his heart. And his heart was five times larger than it was supposed to be. He was then given an ultrasound of the brain, to see if there was an explanation for the increased size and blood flow.
We were rushed to Great Ormond Street Hospital (GOSH) later that night, jumping in the ambulance with Noah and leaving the car and anything else that wasn’t essential behind. They put the blue lights on and within hardly any time we had arrived at GOSH. Only one of us was allowed to sleep by Noah’s bedside, so Liv stayed with him on the ward while I slept in a chair in reception.
Noah had further scans and once again we were taken to a room to explain what they revealed. He had a condition called dural sinus malformation with thrombosis. This meant he had abnormal connections between veins and arteries in his brain which shouldn’t have been there, and they were putting pressure on his heart and brain. His heart was working extra hard. It was getting bigger and bigger.
As we walked out of the room – devastated and confused – I looked at Liv, grabbed her hand, and said “We can do this”.
Although it looked like Noah’s blood had started to clot in the abnormal connections, he needed to be kept at GOSH for monitoring for a few more days. We were so far away from home, and with all the worry and stress I couldn’t even begin to think where I’d be sleeping. Whether it was in reception or not, I would sleep wherever I could in order to be close to my son. Fortunately, I was told to visit the accommodation services and I was introduced to The Sick Children’s Trust.
Tina’s now part of my family. That first day at Guilford Street I was overcome with emotion. The charity had given me the one thing I needed, as a dad, at that moment – to be with my son. This was the first of many stays at The Sick Children’s Trust’s ‘Homes from Home’. Throughout his life, we were in and out of GOSH and the charity supported us at Guilford Street House and its Rainbow House, just around the corner.
At just a few weeks old, Noah underwent major surgery to block off some of the connections between arteries and veins in his brain. It was such a big surgery for our little boy, and we feared for him. But Noah had already proven to be strong. We felt confident that he could pull through.
This was the first time we were told there was a high chance Noah would lose his battle. They thought his heart was just too poorly. We cuddled and kissed our son right up until the moment he was taken to theatre. Then we just broke down.
Fortunately Noah’s operation went really well and we were allowed home for a few weeks before returning again. This is when we decided to bring Theo to GOSH too, so he could be with us and his brother. We knew we could do this because of The Sick Children’s Trust. Guilford Street and Rainbow Houses really did become our ‘Homes from Home’. There was even a playroom where we could entertain Theo.
Noah spent three months at home throughout his entire life. Just three months. The first time we brought him home he was still very poorly. He’d suffer with extreme nose bleeds because the pressure was so high from the blocked connections. Liv and I took turns to stay awake at night and to watch him during the day, because he would start bleeding in his sleep and choke. The decision was made to take him back to GOSH after a scan at our local hospital revealed he needed another operation. We were welcomed back to Rainbow House – which was a relief. Like Tina, Rainbow House Manager Sandra was incredible. Both of them were always there for a chat when we needed it – which we did a lot.
Following his second operation, Noah was at his best. He started to hold his head up and was able to roll over. We thought he had won! However we still had to return for a drain to be fitted on his brain to help with the pressure.
We then had a long time away from GOSH, the longest we had. It was such a lovely break and we felt like we could spend real quality time with both our boys. Theo and Noah grew even closer, sharing lots of cuddles and watching their favourite programmes together. Noah looked at Theo with such love and adoration. It was as if nothing could ever come between them. We have memories that we will cherish forever from those weeks.
Unfortunately this blissful period ended with a bang. One day, Noah went grey and became vacant. His arms went rigid and shook. We went back to A&E, where he was sent for a CT scan. The worried faces of doctors appeared, and after 45 minutes, Noah was in intensive care. As we rushed into the room, I saw a crowd of doctors in the corner and my heart stopped. I knew they were there for Noah.
Noah had suffered a bleed on the brain and needed to go to St George’s Hospital as there were no beds at GOSH. There was just enough time to give him a kiss. We ran to the car in the hope we would arrive at the same time as him. But just 20 miles away from the hospital, an ambulance overtook us and we knew who was in it.
Noah was plugged into a machine to see what sort of seizures he was having and why. He’d suffered with another bleed on the brain which had caused a lot more damage. He was rushed to surgery to have the drain removed and replaced to the other side, but it became blocked once again so an external one was fitted.
Ten days later, Noah stopped breathing. We were then told that he wasn’t going to make the next week.
Noah was in and out of hospital for most of his life. Either at our local hospital or at GOSH. He had nine operations in this short time, some days apart, some weeks apart. He was a real pickle, never giving the team at GOSH an easy day, he was so unpredictable. And he had so much love to give. He touched everyone’s hearts.
The last time I left Guilford Street House, I knew I wouldn’t be coming back. I told Tina that we were taking him home for his last few days (which turned to weeks). Tina just gave me a huge cuddle and shared my tears. I knew I would miss the house and Tina, but a Dad’s got to do what a Dad’s got to do…I had to bring my boy home.
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.
Organ Donation Week 2023: After suffering heart failure last year aged one, Amelia Bolter has been a patient at Great Ormond Street Hospital since October 2022, waiting for a donor heart to become available. Amelia's mum Jodie - who arrived at Guilford Street House heavily pregnant but now has eight-month-old Blossom in tow - shares their story.
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