Hannah's Story

A baby in a red baby grow and arms up

Baby Hannah lost her fight with life at 54-days-old after being born with Edwards’ Syndrome - a rare, serious chromosome condition. 

“Hannah was special from the beginning,” said mum Kate. “She was a magical girl who brought us so much joy. She was so beautiful and the most undemanding little thing.”

Life took a different course for parents Kate and Colin when scans and tests during Kate’s pregnancy revealed Hannah had Edwards’ Syndrome. Most babies with the condition will die before, or shortly after, being born.

“We knew we would continue with the pregnancy and give Hannah the very best chance of life and to see how far she could get,” said Kate. “We were so, so nervous running up to the birth that she wouldn’t make it, but Hannah came out crying and we were both in tears in reaction to that sound. It was brilliant. She had made it. We knew babies with this condition have a very short life so we celebrated every moment.

“We celebrated her first 12 hours with a cake and candle, and then did that every day. We sang to her every day and Nathan, her three-year-old brother, built Lego towers for her and shared his toys. Nathan met Hannah in hospital and he adored her from that moment, and when he sang to her, she stopped crying and listened.”

During pregnancy and to help prepare them for what was to come, Kate and Colin were supported by our Neonatal Link Nurse. Hannah was born at Royal Derby Hospital and after one night, the family came to our hospice for support.

“When we arrived at Rainbows, I felt we were greeted by a huge big hug of love from the nurses,” said Kate. “Hannah was a VIP, everyone knew her name and they appreciated her. Everyone told us how beautiful she was and they could see her for who she was. 

“We had six nights at Rainbows making memories. We painted feet, we swam together in the Hydrotherapy Pool; Hannah couldn’t have been happier than when she was in that warm water. We went for walks in the beautiful gardens, even though it was winter, we loved it. 

“Everyone was so kind. Nothing was ever too much trouble for anyone. And it wasn’t just about Hannah, it was about all of us and how we all were.”

When Hannah went home, the family were supported by a community nursing team, which we liaised with, along with regular calls with our staff. 

At home, they were able to spend precious time making more memories, including celebrating Nathan’s third birthday and their first, and only, Christmas together. 

Hannah visited our hospice again for a few days when she took a turn for the worse before she died peacefully at home on a wintery evening.

“The people at Rainbows have the most amazing aura about them,” said Kate. “I have told people that everyone who works at Rainbows are angels on earth and they made everything so easy for us. We really benefited from being at Rainbows. We know that support will never expire. 

“On paper, Hannah shouldn’t have lived that long. We wouldn’t change anything, we would do it again in a heartbeat. She will always be our precious daughter and Nathan’s sister. Her life wasn’t a tragedy, it was a blessing and we will always be grateful for that.”
 

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