Meet Madison, a gorgeous, happy two-year-old. Her parents, Wendy and Gary, share their story.
“Before Madison was born, we were told that she had Duodenal Atresia and would need surgery; and that she would possibly have Downs Syndrome. Duodenal Atresia means a part of Madison’s small bowel had not developed properly, and she couldn’t pass through her stomach contents.
“This was a huge shock for us both – I remember us sitting and crying, just because it was all so unknown. Madison was born by emergency C-section at 32 weeks. I saw her for a few seconds and then she was rushed to the special care baby unit. Madison was soon transferred to Sheffield where we discovered she had two holes in her heart.”
Madison then went to Leeds at just two days old to have her Duodenal Atresia operated on.
In her first year, she moved back and forth from Bassetlaw and Doncaster hospitals to Sheffield and Leeds for specialist care, as she kept getting very poorly.
During this time, Madison’s mum and dad balanced being by her side with caring for their other children; Harvey, aged 4, Archie, aged 2 and Ben, aged 11. Wendy says, “We felt the boys missed out on a lot as me and Gary had to drive to Leeds every day to be with Madi. When she was a few months old, Madi took a turn for the worst and got very poorly. She was put on a machine to help her breathe. We were told that she had chronic lung disease. Our worst nightmare soon became true and we were told that Madison wasn’t going to make it, and there was nothing more that could be done for her.
“Miraculously, after having steroids, Madison’s health improved and she was well enough to have her major heart surgery. The doctors warned us that she might not survive the operation, but she proved them all wrong. She’s a tough cookie, and a real fighter, and she’s still here with us today. In the first ten months of Madison’s life, she’s gone through what most adults couldn’t go through.
“The first year after she was born, we hadn’t really had a Christmas as she was so poorly in hospital, which meant that the boys missed out too. For her second Christmas, we wanted to have a really special time, but on 23rd December she was readmitted to hospital. We brought her home for half an hour on Christmas Day, but she took a turn for the worse so we had to take her back in.”
After she came home, Madison and her family were referred to Bluebell Wood for respite care, and Gary says, “I was so sceptical at first, I thought – why on earth would we want to go there? But when I walked in, I realised it’s such a happy place. It’s so nice that Madi’s looked after so well, so that we can spend some time with the boys. Madi absolutely loves the sensory room, the musical instruments and painting.
“We have lots of the pictures she’s painted with Di and Cathy, the Activity Co-ordinators, on our walls at home.
“For our family, Bluebell Wood has been so much help, and I know if, when Madi was very poorly, we would have needed end of life care at Bluebell, we’d have been looked after so well.
“I also couldn’t have got through this without the help and support of family and friends, especially Madison’s Aunty, Louise.”
After an emotional rollercoaster for them all, Wendy and Gary are hoping for a lovely Christmas together as a family this year. Wendy says, “The boys missed out on Christmas for the last two years, because Madison was just so poorly. I can’t wait for us all to spend Christmas together.”