Lily’s story: staying at Sheffield Children’s and her new unicorn!

15 September 2020

Meet Lily, the very chuffed new owner of a cuddly unicorn – which perfectly matches her new cast!Patient Lily with cuddly bears

Lily has just gone home after her most recent stay at Sheffield Children’s, which was for a second hip operation to help her be able to sit comfortably. On the day she left though, she was presented with a new fluffy friend thanks to Rays of Sunshine Children’s Charity.

Before Lily was born her mum, Paige, had a 20 week scan which picked up that she was going to be born with Spina Bifida, Hydrocephalus and Chiari Malformation.

Spina bifida is when a baby’s spine and spinal cord does not develop properly and causes a gap in the spine. Hydrocephalus means there is a build-up of fluid in the brain. The excess fluid puts pressure on the brain, which can damage it. A Chiari Malformation is where the lower part of the brain pushes down into the top of spinal canal.

This diagnosis meant that Lily was just one day old when she first came to Sheffield Children’s for multiple ventriculoperitoneal (VP) shunt surgeries, which drained the extra fluid from the brain by moving it into the abdomen, where her body could absorb it. She also had surgery to repair her spina bifida.

Lily and Paige then stayed on the Neonatal Surgical Unit (NSU) for six weeks before heading home to Grimsby.

Lily is now three years old and has been a regular visitor to Sheffield Children’s since those days on the NSU.

Paige said: “If her condition deteriorates at home then she comes in for brain surgery, she has had countless VP shunt and ventricular drain surgeries, plus two hip operations too.”

“Lily recently lost her ability to eat and some of her vision due to a brain infection and is now tube fed and has vision therapy. We lived on Ward 5 for three months over Christmas and the New Year and the surgeons and nurses were amazing at such a difficult time.

“We visit Ward 5 often for everything neuro-related. It is like our second home and we really adore all the nurses, doctors and surgeons there. It really is like a little family. Lily has made friends for life on the ward. Being in hospital is daunting but we are always at ease and our spirits are always kept up by the staff.”

Lily’s recent appointment was the first time Paige had brought her to Sheffield Children’s since Trust introduced measures to help keep patients safe from COVID-19. These include floor stickers to encourage social distancing and a one parent or carer per patient policy.

Paige said: “I was very uneasy leaving our home to come into hospital for Lily to have a hip operation due to the COVID-19 situation. But everywhere is clearly marked, appointments are scheduled and on time, masks are worn and staff wear appropriate PPE. We felt 100% safe.”

Lily will continue to receive long term care from various teams at Sheffield Children’s, including the combined Spinal Clinic, Ophthalmology, Neurology, Neurosurgery, Urology, Orthopaedics and the hydrocephalus nurses.

“Lily has truly had some difficult times and days where we were uncertain of what the future held but because of the amazing teams at Sheffield Children’s our faith and hope is always strong. They always provide the best care to Lily and we are truly grateful for that. I couldn’t be happier with the care she receives.”

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