Lennon Smout was born with a life-threatening condition and his family were told he might not survive. They were, however, able to make some very special memories
A family has been left heartbroken after their six-month-old baby passed away, prompting them to raise awareness and support for the hospice that helped them during the heartbreaking ordeal. Lennon Smout was born in June 2018 into a family who knew they might not have long with him.
When Jessica Smout attended her 12-week scan, the doctors detected something was amiss, warning that her son could be born with a “potentially life-threatening” condition. The 31-year-old mum described hearing about her son’s survival chances as “heart-wrenching”.
Lennon arrived in the world with congenital diaphragmatic hernia (CDH), an anomaly occurring in just one in 5,000 UK babies, where the diaphragm doesn’t properly divide the chest from the abdominal organs, affecting the lungs and heart. Though some infants can overcome the defect with surgery, severe CDH can lead to miscarriage or stillbirth.
Callum Broad, Lennon’s uncle, shared with the Liverpool Echo: “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. Lennon was born and he spent his whole life in Alder Hey (Children’s Hospital).”
During the brief six months of Lennon’s life, his mum Jessica, dad Chris, and grandma moved into the hospital to be by his side. Callum, Lennon’s uncle, spent every weekend with his nephew, acknowledging that while there were fleeting moments of improvement, they knew there was no cure for him.
The devastating choice to move their newborn son to a hospice was heart-wrenching for Jessica and Chris, yet Callum viewed it as “the best decision we ever made”. He praised the hospice workers, saying, “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.”
Lennon sadly passed away in his mother’s arms in December 2018 at Claire House. Still, the hospice’s support did not end with his death. An emotional Callum revealed that his family is still receiving bereavement services, gratefully stating, “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…They’ve supported my family for the last six years.”
Callum put his dancing skills to good use last month when he participated in the Strictly Come Dancing fundraiser. He won the coveted Glitterball trophy for Claire House, performing an American Smooth Waltz with professional dancer Samantha Jones. The event was held in support of counselling services, bereaved parent and sibling support groups, and events like Memory Day, all in memory of his nephew.