When Katie gave birth to her daughter at just 23 weeks, no one expected her to survive.
Against all the odds, Dotty is now a smiley, happy, one-year-old. But for her parents, Katie and Luke, every day is a reminder of how precious life is.
At birth, their “dinky little Dot” weighed just 515g. Soon after birth they discovered she had suffered a brain bleed, which consequently led to hydrocephalus – a build-up of fluid on the brain.
“Looking back, it was absolutely horrific,” said Katie. “We spent 129 days in the Neonatal Intensive Care Unit and had multiple conversations where we were told it was unlikely she would survive.
“Dotty was having apnoea episodes where she would stop breathing, go grey and become floppy. It was terrifying. She needed a shunt to drain the fluid from her brain, but she first had to gain enough weight for the surgery. It felt like we were constantly up against it.”
When Dotty reached 2.5kg, she was finally able to have the operation.
“After the surgery she started to improve,” Katie said. “But we know shunt failure can happen at any time. It has already failed twice, and Dotty has ended up back in hospital for emergency lifesaving surgery. Those moments were terrifying.”
Dotty also developed chronic lung disease, amongst other health conditions, and doctors were initially unsure whether she would ever breathe without a ventilator.
“Thankfully, with the help of steroids, she eventually started breathing on her own and, after five months in hospital, we were finally able to bring her home on a small amount of oxygen,” said Katie.
During their time at Nottingham’s Queen’s Medical Centre, Katie and Luke received support from our Clinical Nurse Specialist and Family Support Worker, who worked alongside the NHS to help them navigate an incredibly difficult journey from the moment of diagnosis to the present day.
“Rainbows was exactly what we needed during the darkest time of our lives,” Katie said. “From the moment we met the team, we knew we could lean on them in so many different ways. Everything we experienced with Rainbows was so kind and thoughtful. They guided us, supported us and made such a difference to our whole family.”
Katie particularly remembers the support of our Music Therapist. “Those sessions became the highlight of our week and Dotty absolutely loved them,” she said. “She had little chimes played on her feet and we learnt about positive touch because she’d been through so many painful heel-prick tests.”
We also looked after Katie. “I had massages from the Rainbows Complementary Therapist,” she said. “We’d often spend 24 hours a day sitting beside Dotty’s incubator, so being able to have a back massage was just wonderful.
“For us, one memory stands out above all the others. Dotty spent her first Christmas in hospital. We hadn’t been able to buy her any presents, but the Rainbows team surprised her with gifts. It was such a thoughtful gesture and something we’ll never forget. They really are wonderful people.”
Since coming home, Katie and Dotty have continued to receive support by attending our Baby Group at our hospice. “Being there reminds you that you’re going to be okay because everyone is so welcoming and supportive,” Katie said. “And it’s often the simple things that mean the most.”
Although Dotty has made incredible progress, her future remains uncertain.
“We don’t know the full extent of the damage caused by the brain bleeds and hydrocephalus, and she’s still highly vulnerable, particularly to respiratory infections,” Katie said. “We don’t know exactly what life will look like for Dotty or what support she’ll need in the future. But one thing we do know is that Rainbows will be there to help us through it.”
For us, one memory stands out above all the others. Dotty spent her first Christmas in hospital. We hadn’t been able to buy her any presents, but the Rainbows team surprised her with gifts. It was such a thoughtful gesture and something we’ll never forget.