Cici’s story

Seven-year-old Sicily, lovingly known as Cici, from Pembrokeshire is a bright, determined little girl with an imagination as big as her personality. Her dad, Sam, says she’s “a force to be reckoned with”.

Cici’s hospital journey began before she was even born. At Lydia’s 12-week scan, the antenatal team expressed concerned that she may have Down’s Syndrome. Then, at 27 weeks, Cici was diagnosed with an AVSD (atrioventricular septal defect). This is a congenital heart condition where there is a hole in the centre of the heart, affecting the walls (septum) that separate the chambers, and the valves that control blood flow. Because of where the hole was, Lydia and Sam were told that Cici would likely need surgery by the time she was three-months-old.

At 32 weeks, Lydia noticed that the baby was moving less than usual. Concerned about her wellbeing, the decision was made to deliver Cici by emergency C-section. She was taken to the neonatal intensive care unit, where for the first 24 hours she was given breathing support.

Then at just three days old, Cici was diagnosed with transient leukaemia. This is a rare condition sometimes seen in newborns, particularly those with certain genetic conditions, where there is a temporary increase in abnormal white blood cells. The reassuring part is that it often resolves on its own and in Cici’s case, it did, disappearing completely before she was a month old. Though the clinical team had prepared Lydia and Sam for a long hospital stay, in true Cici style, she surprised everyone and was home after just three weeks. The hole in Cici’s heart was also beginning to close on its own, so Instead of moving straight to surgery, the cardiology team decided to watch and wait.

At 14 weeks old, Cici became breathless and was admitted back to hospital, where she was given diuretics to help her heart work more efficiently. But with every scan, there was more good news, the hole kept getting smaller. The ventricular part had almost completely closed and the atrial part was small enough that the team chose to leave it and continue monitoring.

During the COVID pandemic, Cici wasn’t able to attend her regular scans, but she showed such improvement that she was able to come off her medication. Then, at age three, a follow-up scan confirmed something incredible, the hole no longer needed any intervention.

When Cici was five at one of her regular check ups, the cardiology team noticed that one of her AV valves was leaking. The plan was to wait until she grew bigger and stronger, around 18kg, before repairing it. In preparation for surgery,, Cici had six sessions of play therapy with Donna, a therapeutic play specialist. These sessions were vital. Lydia said: “Cici is so bright that you can’t just distract her, she needs to know what to expect and what’s expected of her. Cici can experience sensory overload and sometimes becomes overwhelmed, so giving her understanding and control made all the difference.”

Cici’s favourite phrase is, “I did it!” – a proud declaration after every challenge she overcomes.

Through the Beads of Courage programme, funded thanks to you, our supporters, Cici collects a bead for every step of her journey. Each bead tells part of her story. Cici is very proud of her beads and even has one that has her famous line on it. They help her make sense of everything she’s been through and gives her a way to process her experiences.

Because of the preparation and support she’s received, Cici now approaches procedures with confidence. Lydia says it’s helped her too: “If I don’t know what to expect, I can’t reassure her. It’s been a massive help for both of us.”

Despite developmental delays and learning difficulties, Cici’s journey shows what’s possible when time, care, and understanding are invested in preparing children for medical proceedures. It doesn’t just improve outcomes, it takes away fear – for the child and for their family too.

Later this month, Cici will take her next big step: valve repair surgery where surgeons will also patch the remaining hole using her own pericardial tissue.

Her family couldn’t be prouder. As Lydia says: “She’s a tough little thing – strong-minded and very determined. She’s sociable, loves to play, and has the most amazing imagination. We’re so proud of her.”