Katie-Rae

A Spina Bifida and Trisomy 18 Angel

Katie-Rae was born on the 10th of August 2016, weighing a tiny 4lb and fighting strong. We had been told beforehand that she likely had Trisomy 18 and Spina Bifida, and it was very unlikely she would make it to birth and that if she did, she wouldn't survive for long. We had been told to terminate numerous times and told she would be a "vegetable" and that it would be "cruel to keep her alive." We chose to let her decide and lead the way. Katie-Rae did have Trisomy 18 and Spina Bifida. At 10 days old, she had an operation to close the Spina Bifida and to insert a shunt to drain away any fluid from her head. It was a risky operation, but Katie-Rae was a fighter and it all went well. She was able to finally come home when she was 1 month old. She was on oxygen and fed via a tube.

Katie-Rae thrived and we were able to make lots of memories with her, taking her to the seaside and to a safari park. Everyone who met her fell in love with her. She was very nosey and liked to know who was around her. She loved her sensory lights, her dummy, and her family. At Christmas time, Katie-Rae became really poorly, and days before Christmas, we were told she wouldn't make it as her organs were failing. Katie-Rae had other ideas and pulled through. They let her come home on Christmas Eve. We had the best Christmas with her and she got spoiled!

Sadly, she became unwell again. Her heart was failing, and cardiologists refused to help her because she had Trisomy 18. Our little warrior was tired, and she grew her wings in the early hours on the 6th of February. Katie-Rae was the strongest and bravest girl I have ever known. She touched the hearts of so many people. She made me a better person, and I feel so lucky that I was chosen to be her mummy. She will forever be loved and missed.