Eilidh

11-year-old Eilidh has been through more than most children her age. From throat surgery just days after her birth to heart surgery 11 years later, she’s no stranger to being in hospital. Eilidh and her parents, Desiree and Ian, tell us why having access to creative activities through Arts Unleashed, our arts programme, was so important for her recovery. 

“Eilidh was born five weeks early at our local hospital in Derriford, Plymouth. After she was born, we started to notice something wasn’t right when it came to feeding. It was there that we received a scary diagnosis: Eilidh had tracheoesophageal fistula and oesophageal atresia (TOF/OA). The oesophageal atresia meant Eilidh’s oesophagus – the pipe that passes food from the stomach to the mouth – didn’t actually reach her stomach. She wouldn’t be able to eat, drink or swallow. This went hand-in-hand with the tracheoesophageal fistula, a defect which meant her oesophagus was connected to her windpipe. We were told it could cause air to pass into her stomach and for stomach acid to make its way into her little lungs. 

These defects can be extremely dangerous. Ian and I were told that she would require specialist surgery to correct it. 

We were whisked from Derriford to St Michael’s Neonatal Intensive Care Unit (NICU) the morning after her birth. We left not knowing how long we’d be there, or where we would stay. It was a scary and anxious time for us, but when we found out we’d been given a free room in Cots for Tots House, which was just across from St Michael’s Hospital, it took such a weight off our shoulders. It was a huge relief, knowing that we would be so close to Eilidh for as long as we’d need. 

At just three days old, she had surgery on her oesophagus to correct the TOF/OA.

To this day, we’re still in contact with some of the other families and get to watch them grow and celebrate. 

The support we had from Cots for Tots was incredible. We felt truly grateful and have since raised money for The Grand Appeal and Cots for Tots. In 2023, my friend and I took part in the charity’s cycling challenge, London to Amsterdam, to support other families at such a worrying time. Through it, I met Nick, who was cycling in loving memory of his son, Cam. Back in 2019, Ian also took on a cycling challenge, pedalling from Land’s End in Cornwall to Bristol to raise money. 

While we were in NICU, we found out that Eilidh also had a hole in her heart. She was monitored under the hope that her heart would repair itself over time and close the hole. But it wasn’t until she was four years old that we found out that there wasn’t one, but two holes in the chambers of her heart. It meant she’d need surgery when she was older, because by this point, they hadn’t closed and one was worryingly large. 

Recently, we were admitted to Dolphin Ward in Bristol Children’s Hospital for her heart surgery. All the ward staff were so kind and caring. We really felt like we were in safe hands. We were supported and kept informed throughout her stay. 

Her surgery went well, and afterwards, she was transferred to the Paediatric Intensive Care Unit (PICU) for two days to recover. All the staff on PICU were so attentive and encouraging. They looked after not just Eilidh, but us too. As her mum, it was an anxious time, living so far away from the hospital. I was grateful for the use of the family room during her time in PICU and the ability to sleep next to her on the ward. 

Soon, she was back on Dolphin Ward, where she stayed for the rest of her recovery period. 

Although not everything was smooth sailing – there were a few scary moments. Eilidh suffered a collapsed lung because she’d spent a long time on her side during surgery. developed pericarditis, which is a swelling of the sac surrounding the heart. She was placed on medication for the pericarditis, and had some physiotherapy to help get her full lung function back. When she started to recover and move around more, her lung naturally reinflated. 

Eilidh has always been a creative girl and is often crafting, painting, drawing or writing. During her visits back and forth to Bristol Children’s Hospital for checkups and procedures, we needed to keep her entertained. It was great that during her stay she could have moments of normality and take part in Arts Unleashed sessions. She was able to go and spend time watching the magician alongside other children who were in similar positions. Eilidh thoroughly enjoyed crafting a collage lizard using scraps of coloured paper as part of an art exhibition. It gave her an area of focus, taking her mind off being in hospital. 

The sessions are so valuable to both children and their parents. They allow children to have some fun and put their imagination and creativity to use, producing beautiful pieces of art. And best of all, it put a smile on Eilidh’s face. After all she’d been through, I hadn’t seen a smile since before her surgery. It was a very special moment for me. 

Eilidh even got to experience a visit from stormtroopers and other Star Wars characters, which she loved. Eilidh, her brother and her dad are all fans of Star Wars and this visit was yet another way the hospital provides excellent care. 

Throughout her whole hospital journey, every staff member we met was kind and supportive, and we were always being consulted about Eilidh’s care. Despite everything, it was a hugely positive experience. 

Eilidh is recovering well and hopefully this will mean that she never has to have any further heart surgery in the future, only checkups and smaller procedures for her TOF/OA surgery reviews. It’s a huge relief that it’s all done.”