'I was given heart wrenching news at my baby's 12 week scan - he spent his entire life in hospital'

Mum-to-be Jessica Smout was fixed the devastating diagnosis erstwhile she went for the regular ultrasound. Baby Lennon was calved with a uncommon information and helium spent the adjacent six months successful hospital

A mum whose baby boy was diagnosed with a superior information astatine the 12-week scan, held him successful her arms erstwhile helium died aft conscionable six months of life.

Jessica Smout, 31, was transferred to infirmary during her pregnancy aft she was fixed "heart-wrenching" likelihood astir her son's chances of survival. She was told helium would beryllium calved with a “potentially life-threatening” condition. It turned retired to beryllium a uncommon defect of the diaphragm called congenital diaphragmatic hernia.

When her baby, Lennon, was calved helium spent each six months of his beingness successful Alder Hey Children’s Hospital successful Liverpool. During those six months, Jessica and her husband, Chris, alongside Jessica’s mum, moved into Alder Hey to walk arsenic overmuch clip arsenic imaginable with him.

Callum Broad, Lennon’s uncle, said: “When my sister went for her 12-week scan they were told determination was an abnormality. We didn’t cognize what it was but we knew helium was going to beryllium poorly, whether it was a syndrome oregon thing else."

Callum besides spent each play astatine the infirmary with his nephew. He said: “Things looked hopeful astatine times but yet determination wasn't going to beryllium a cure oregon a hole for Lennon. That is erstwhile we made the modulation implicit to Claire House. It was a horrendous time, but passim it Claire House was visiting my sister and brother-in-law play and giving them support."

Lennon died successful his mum's arms successful December 2018. Jessica, 31, from Wrexham, said play specialists helped them to prosecute with Lennon, by speechmaking books to him and playing with sensory airy toys, "which helium loved", and making lifelong memories they inactive cherish.

She said: "We visited Claire House, hoping for the champion autobus besides preparing for the worst," she told the Liverpool Echo. "Walking done the doors of Claire House was the champion determination we ever made.

"There were specializer caregiver consultants who supported america successful processing and knowing Lennon's diagnosis and play specialists who helped america to prosecute with Lennon, by speechmaking books to him, playing with sensory airy toys, which helium loved, and making lifelong memories, alongside tons of personalised memorabilia, which we are present near with to treasure.

“Claire House visited america successful infirmary each week and precise rapidly became our lifeline. It was a sanctuary for us, and we proceed to payment from truthful galore of their services. I couldn’t ideate wherever we’d beryllium close present without the love, guidance, attraction and enactment they’ve fixed and proceed to springiness us.”

In enactment of the hospice, Callum took portion successful the charity’s Strictly Come Dancing fundraiser for its counselling, bereaved mum, dada and sibling enactment groups, and events similar Memory Day, successful representation of his nephew. He said: “I chose to bash this for Claire House due to the fact that they've supported my household for the past six years. Claire House was determination passim the full travel - the scans, Lennon's clip successful hospital, and erstwhile helium ended up astatine Claire House.

"They've fixed america truthful much, truthful it was clip for maine to springiness back. It's been amazing, from commencement to finish. I woke up the adjacent greeting and wanted to bash it each again."

Callum was 1 of 9 amateur dancers who took portion successful the contention astatine Liverpool’s Titanic Hotel, unneurotic raising £72,000.