Iona Florence was born on 30 October 2017 at 26 weeks, weighing just 430 grams.
Iona required ventilation support from birth, which affected the development of her lungs and resulted in significant lung damage.
On 7 September 2018, Iona died at Southmead Hospital in Bristol aged 10 months.
Following Iona’s death her family spent some time at Charlton Farm, a decision that allowed them to create precious memories together.
Iona’s mum, Sharon, reflects on the support her family received from Charlton Farm during one of the most difficult times of their lives.
“When Iona died, we were lost and didn’t know what to do. One of the nurses asked if we wanted to visit Charlton Farm and we said yes."
I remember cradling her throughout the whole journey there and never wanting to let go.
Sharon recalls that Disney music had been playing in the hospital when Iona died, a detail that the family were so touched the hospice team had woven into the room they came into at the hospice.
“As we arrived at Charlton Farm, I will always remember walking into the most beautiful nursery that they had made up especially for us, with her name and Disney toys, all ready for our Princess Iona. I know it sounds silly, but we never had that as Iona had been in hospital since she was born. A nursery was something we could never give her, so it was just so special.”
It was in these moments that Sharon was able to dance with Iona, something she describes as deeply precious and which allowed her to hold her daughter and be a mum in the way she had always wanted to be.
“When we were in hospital, I always had to ask if I could hold Iona because of all the wires and tubes in NICU. At Charlton Farm, nobody ever judged us for how many times we wanted to hold her."
Being able to hold her and dance with her was such a beautiful memory. I could never repay them for that.
Sharon says it was the constant presence of the Charlton Farm team that helped her family through the most difficult days. Whether it was offering a listening ear in the middle of the night or providing support after Iona’s death.
“I remember them just being there to listen, no matter what time it was. If I was walking the corridors at 3am, it was so lovely to see that there was always someone there to talk to and most importantly, listen.”
“At this time, I was extremely worried about my husband’s wellbeing. When it came to registering Iona’s death, I remember the care team accompanying my husband to the Register Office, driving him there and supporting him throughout."
It is something I will never forget and will always be grateful for. It was like they held our hand at that moment.
“When it came to the funeral they very kindly let us stay the night before at Charlton Farm and allowed Iona to leave from this special place. ”
Sharon describes the experience of losing a child as feeling completely ‘lost’ and recalls that the support they received was what kept her family going. She says Charlton Farm was the one thing that saved them.
“I remember a lovely girl called Charlie. She supported us in organising our daughter’s funeral, wake and photo board. When it came to organising our own child’s funeral, we felt like we could fall apart because there were people there to catch us and reassure us that it was okay.”
As the family transitioned from a year spent in hospital to returning home, their stay at the hospice helped them adjust to life outside of hospital walls.
“I hadn’t been home for nearly a year, so this transition really helped us.”
Following the support Sharon and her family received through the darkest period of their lives, Sharon made the decision to leave a gift to Charlton Farm in her Will as her way to give something back.
"I know we don’t have much, but whatever we do have will go to Charlton Farm."
Sharon hopes her gift will help the charity to continue to provide the same care and support that meant so much to her family.
They were the first brick in the wall of rebuilding our lives. They gave us that foundation.
She wants other families facing the death of a child to have the same opportunity to spend precious time together, away from the sounds of hospital machines and medical equipment.
“I never had that precious time with Iona until we arrived at Charlton Farm. For the first time, I could cradle her like a mum should, without judgement and without restrictions. I want to give that gift to someone else.”
Sharon has a simple message for anyone considering leaving a gift in their Will.
“If you are thinking about leaving a gift in your Will, please do it. The hospice is a lifeline. Not only for families who use the hospice for respite care, but for families like mine too."
“Charlton Farm is like a big hug and it needs all the help it can get to keep going.”
I don’t even think Charlton Farm knows this, but they caught us and helped us rebuild our lives.
The family continue their life with Iona’s little sister, Riley who is now 6. They have learnt to rebuild their lives while carrying Iona’s memory with them.