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After 4 years of trying for a baby my husband and I were over the moon to find out we were pregnant. Everything was going great up until the 20 week scan. We are told our daughter had numerous health complications including spina bifida, hydrocephalus, talipes and clenched fingers. The hospital arranged another appointment for us at a specialist hospital and gave us a handful of leaflets. They also mentioned having a termination but I dismissed that idea immediately.
At our next appointment we had another scan. The consultant then sat us down and confirmed our worst fears. Our baby girl was very, very poorly. He couldn’t confirm trisomy18 without having the amniocentesis, but we refused this due to the small risk of miscarriage. He said he was about 90% sure that it was though. He advised we terminate the pregnancy saying that on the very small chance that she did survive the birth she would be a ‘vegetable’, she would ‘suffer' and that we would be ‘cruel to keep her alive’. We again refused this saying that we would let our daughter decide her future. We left the hospital absolutely heartbroken. We spent the rest of the pregnancy making memories and doing our own research. We found that a small number of trisomy babies were surviving with medical intervention and from then on decided we would fight for our daughter’s right to live.
On the 10th August 2016 Our beautiful girl was born via planned C-section at 38+5 weeks. She weighed a tiny 4lbs and after being stabilised by the doctors she was taken straight to NICU. Later that evening I was finally able to see and hold my beautiful and strong girl. 
At 2 days old they confirmed she had Trisomy 18. At 10 days old Katie-Rae had an operation to close the spina bifida and to put in a shunt for the hydrocephalus. We were told there was a high chance she wouldn’t make it through, but she did fantastic and recovered well. Me and her dad had to have training on feeding her through her ng tube and on her oxygen but at 4 weeks old she was allowed to come home. Something that we thought would never happen.
We spent the time we had with her making lots of memories as a family and loving every moment. She loved cuddles, especially with her big sister Rachel, she loved her dummy and she loved all her light up toys. We even took her to Blackpool so she could see the lights and the sea and she enjoyed watching the sea lions at Knowsley Safari Park.
In the December she became very ill. We took her to hospital and the Drs told us her organs were failing and that she would not be going home. We were heartbroken but didn’t give up on her. After a close call she pulled through proving the Doctors wrong yet again. We brought her home Christmas Eve. We got to have the best Christmas and New year with her and our family and make more memories.
Sadly, in February she became poorly again. She was so strong but it was too much for her. I held her in my arms whilst she stared straight into my eyes and took her last breath. Katie-Rae has left a huge hole in our hearts and our lives but we wouldn’t trade the time we had with her for anything. She loved us as much as we loved her and she gave us the best months of our lives. Everyone who knew her fell in love with her and she accomplished so much in her short but full life.
In October 2018,  we were delighted to welcome little sister Phoebe to our family.

Samantha and Paul Rogers

Created: 22/01/2019 16:50

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