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

A mum whose boy was diagnosed with a serious condition at the 12-week scan, held him in her arms when he died after just six months of life.

Jessica Smout, 31, was transferred to hospital during her after she was given "heart-wrenching" odds about her son's chances of survival. She was told he would be born with a “potentially life-threatening” . It turned out to be a rare defect of the diaphragm called congenital diaphragmatic hernia.

When her baby, Lennon, was born he spent all six months of his life in in Liverpool. During those six months, Jessica and her husband, Chris, alongside Jessica’s mum, moved into Alder Hey to spend as much time as possible with him.

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Callum Broad, Lennon’s uncle, said: “When my sister went for her 12-week scan they were told there was an abnormality. We didn’t know what it was but we knew he was going to be poorly, whether it was a syndrome or something else."

Callum also spent every weekend at the hospital with his nephew. He said: “Things looked hopeful at times but ultimately there wasn't going to be a cure or a fix for Lennon. That is when we made the transition over to Claire House. It was a horrendous time, but throughout it Claire House was visiting my sister and brother-in-law weekly and giving them support."

Lennon died in his mum's arms in December 2018. Jessica, 31, from Wrexham, said play specialists helped them to engage with Lennon, by reading books to him and playing with sensory light toys, "which he loved", and making lifelong memories they still cherish.

She said: "We visited Claire House, hoping for the best bus also preparing for the worst," "Walking through the doors of Claire House was the best decision we ever made.

"There were specialist nurse consultants who supported us in processing and understanding Lennon's diagnosis and play specialists who helped us to engage with Lennon, by reading books to him, playing with sensory light toys, which he loved, and making lifelong memories, alongside lots of personalised memorabilia, which we are now left with to treasure.

“Claire House visited us in hospital every week and very quickly became our lifeline. It was a sanctuary for us, and we continue to benefit from so many of their services. I couldn’t imagine where we’d be right now without the love, guidance, care and support they’ve given and continue to give us.”

In support of the hospice, Callum took part in the charity’s fundraiser for its counselling, bereaved mum, dad and sibling support groups, and events like Memory Day, in memory of his nephew. He said: “I chose to do this for Claire House because they've supported my family for the last six years. Claire House was there throughout the whole journey - the scans, Lennon's time in hospital, and when he ended up at Claire House.

"They've given us so much, so it was time for me to give back. It's been amazing, from start to finish. I woke up the next morning and wanted to do it all again."

Callum was one of nine amateur dancers who took part in the contest at Liverpool’s Titanic Hotel, together raising £72,000.