This is Beau's Story

Born at 29.5 weeks, due to an unrelated maternal ligament rupture and 3.5 litre blood loss. Beau was born to save his Mum’s life. At 3 months Beau was diagnosed with CCHS, Hirschsprung’s Bowel Disease and Chronic Lung Disease and stayed in hospital from birth on the 22nd September 2021 until the 27th June 2022. 1,500 people are diagnosed with CCHS worldwide. Simply put, he cannot regulate his breathing correctly when asleep. Beau is currently 24/7 ventilated via tracheostomy and has to have 24/7 fully competent trained care. Including carers watching over him overnight, every night. 

Beau had his First Bath at 4 months old

Unfortunately COVID still had a part to play when it came to Beau’s long term admission in hospital. Harrison, his big brother finally got to meet Beau on Mother’s Day at 6 months old and only a couple of family members were allowed to visit in hospital towards the end of admission. 

Born on the 22nd September 2021 > Home on the 27th June 2022

Since Beau has been home, he’s been out and about, met family and friends, spent time at Chestnut Tree House and has thrived being in a routine at home. There’s still a winding path ahead, however he’s proven his strength and determination thus far, fighting pneumonia, lung collapse and meningitis. He’s truly a heroic little warrior.

A Long Road Home…
Worthing
Brighton Neonatal Intensive Care Unit
Evelina Neonatal Intensive Care Unit
Evelina Paediatric Intensive Care Unit
Evelina Paediatric High Dependency Unit
Brighton Paediatric High Dependency Unit
Home!!!

Eloise & Ash