A Sussex family has spoken of the vital support they received from a charity while going through the heartbreak of losing their nine-month-old baby to a rare condition.
Scott and Liv Thatcher have shared their son Noah’s story to raise awareness for The Sick Children’s Trust, which supports families with seriously ill children in hospital with free accommodation.
Scott said, “Noah was a gorgeous boy who loved his brother, Theo, more than anything in the world. He would always be smiling or giggling when he 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.”
At two weeks old, his parents took Noah to Eastbourne DGH due to swelling all over his body.
He was transferred to Hastings where an X-ray revealed Noah had a hole in the middle of his heart, and it was five times larger than it was supposed to be. The family was rushed to Great Ormond Street Hospital, in London, but only one of Noah’s parents was allowed to stay at his bedside.
The Sick Children’s Trust offered Scott a room to stay at night, which meant he no longer had to sleep in a hospital chair. Scott said, “The charity had given me the one thing I needed, as a dad, at that moment – to be with my son.”
It was discovered Noah had a condition called dural sinus malformation with thrombosis. At just a few weeks old, he had major surgery on his brain.
Scott said, “It was such a big surgery for our little boy, and we feared for him. But he had already proven to be strong. We felt sure he could pull through. We cuddled and kissed him right up until the moment he was taken to theatre. Then we just broke down.”
The operation went well and Noah was reunited with his big brother Theo, when he was able to stay with his family in accommodation near the hospital, thanks to The Sick Children’s Trust.
Noah had a second operation and his parents said he seemed his best, and was able to hold his head up and roll over. They took him home and Scott said, “We had memories we could treasure from those weeks.”
But, sadly one day everything changed. Noah didn’t make it. He had had nine operations in his nine months of life. His father said, “He had so much love to give. He touched everyone’s hearts.”
The family, who live in Eastbourne, have thanked the team who provided support and a chance to talk about what they were going through. For more details about the charity, visit www.sickchildrenstrust.org