Florence
At four-days-old, Florence suffered a cardiac arrest. A year later, on the exact same date, she endured a second.
Her parents, Claire and Tom, feared the worst for their baby and were given support by Rainbows.
Two-year-old Florence was born with Hypoplastic Left Heart Syndrome and for her parents, October 24, the date of her cardiac arrests in 2022 and 2023, is incredibly emotional.
“We found out at our 20-week scan that Florence had some heart complications,” said Claire. “But unfortunately, it got worse by her 25-week scan.
“When she born, Florence was whisked away to the Neonatal Intensive Care Unit and she had her first surgery at four-days-old, which was heartbreaking. That evening Florence had a cardiac arrest.
“From that point we didn’t have an easy journey, Florence ended up staying in hospital until after her second stage surgery, when she was nearly seven-and-a-half-months-old. During that time, she was reliant on oxygen and was confined to her bed. We never really left the room.”
Florence has spent more than half of her life in hospital, and during that time, her family were supported by Katie Brant, our Rainbows Clinical Nurse Specialist. Katie explained how our charity could help the family, including while Florence was in hospital.
“Rainbows really helped us because we had play specialists come in and do sessions and Rosie, the Music Therapist came in. Florence absolutely adores music, and she adores Rosie so having that kind of connection was really nice,” said Claire. “When we finally got home, we booked our first visit to Rainbows, which was amazing.
“One of the things that I thought I would really struggle with was going to a hospice. That word has such connotations in life, but actually Rainbows is so far from what you think. At home, we call it Rainbows House.
“During her first stay, Florence was having a ball. It’s really special that we have a place to be where we don’t have to be nurses. When it’s medication time, we don’t need to worry about any of that, we can just be mum and dad.
“Our first impressions of Rainbows were how un-clinical and un-hospital like it is. Before entering this world, I was one of those people that thought hospice only meant end-of-life care. Actually, Rainbows is so amazing. It’s so bright, it’s so colourful and there’s so much to do.
“It’s like home from home and when I’ve stayed in the family flats, I almost feel like I’m at a hotel and I actually have time for myself. I have time to think about something other than being Claire the mum or Claire the carer. I have chance to remind myself just who Claire is.
“One our favourite things to do is go swimming but because Florence is a cardiac baby, she gets cold very quickly so we can’t take her to normal swimming baths. So, the only time we can go swimming is when we’re at Rainbows. And the joy she has from swimming give us so much joy.
“Florence also adores spending time in the Music Room, just playing with all of the different instruments, singing and clapping. Soft Play is also great, because we can’t go to normal soft plays because of the infection risk.”
Florence and Claire also attend our Parent and Baby Group and have been to one of our Hubs – which takes the Rainbows experience to communities. Claire says it is great to meet other little children and their parents on their journeys. “To meet others who understand the pressures of this kind of medically complex life is utterly amazing,” she said.
“It is also wonderful to have our Family Support Worker, who is regularly in touch and knows all about us and can support and signpost for us.
“Rainbows is just such an incredible place and we really wouldn’t be without it.”
One of the things that I thought I would really struggle with was going to a hospice. That word has such connotations in life, but actually Rainbows is so far from what you think. At home, we call it Rainbows House.
