FAMILY’S PRECIOUS MEMORIES OF HANNAH
PARENTS OF BABY WHO DIED FROM A RARE CHROMOSOME DISORDER REFLECT ON THE 54 PRECIOUS DAYS THEY GOT TO SPEND WITH HER
THE mother of a baby girl who died from a rare condition at just seven weeks old has said the tot was a joy and blessing, and her family will always treasure the precious time they got to spend with her.
Baby Hannah Hart lost her fight for life at 54 days old after being born with Edwards’ Syndrome – a rare and serious chromosome condition.
Her parents, Kate and Colin, from Uttoxeter, have told how they were shocked when scans and tests during Kate’s pregnancy revealed Hannah had Edwards’ Syndrome. Most babies with the condition die before or shortly after being born, but Hannah was a fighter and defied the odds.
Kate said: “Hannah was special from the beginning. She was a magical girl who brought us so much joy. She was so beautiful and the most undemanding little thing.”
She added: “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.”
Kate told how she and Colin knew they would continue with the pregnancy despite the devastating news and “give Hannah the very best chance of life and to see how far she could get”.
She said: “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 Rainbows’ Neonatal Link Nurse from Rainbows Hospice in Loughborough. Hannah was born at Royal Derby Hospital and after one night, the family went to the 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 plucky Hannah went home, the family were supported by a community nursing team, which Rainbows liaised with, along with receiving regular calls with hospice staff.
At home, the family were able to spend precious time making more memories, including celebrating Nathan’s third birthday and their first, and only, Christmas all together.
Hannah visited Rainbows again for a few days when she took a turn for the worse before she died peacefully at home on a wintery evening, said her devoted family.
Now Kate and Colin, along with a group of friends have completed a fund-raising challenge in her memory. A total of £1,799 has been raised and donated to Rainbows Hospice for Children and Young People, where Hannah and her family were cared for.
With their friends, Kate and Colin wanted to fund-raise for Rainbows as a way of saying thank you. They devised a challenge to cover 54 miles during the month of August in any way people chose. Nine families from Uttoxeter and the surrounding areas, and a friend in Bath, took part.
Kate and Colin chose the distance of 54 miles because Hannah lived for 54 days. They set a fund-raising target of £1,331 as Hannah was born at 13.31.
“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 wanted to do something for Rainbows and get behind the cause. We really benefited from being at Rainbows. We know that support will never expire.”
To donate in memory of Hannah, visit justgiving.com/fundraising/hannahhart54days
We knew babies with this condition have a very short life so we celebrated every moment
Kate Hart