Billie's Story

Life with a new baby is an exhilarating ride at the best of times. The newness and upheaval of it all. The way it impacts on all of the day to day.  But life with a new baby through the worst of times can be more of an emotional rollercoaster that few parents can be prepared for.  That’s how Gary describes the first year of life with their baby daughter Billie. She arrived 13 weeks early weighing in at just 790g (or 1lb and 11 oz) and with undeveloped lungs and needing both emergency bowel surgery and then heart surgery. Only just 18 months, Billie has already been diagnosed with chronic lung disease, tracheobronchomalacia (when a weakened windpipe continues to collapse during breathing leaving Billie short of breath), mild hearing loss, delayed development and epilepsy.   Early on in Billie’s life, the family were moved from their local hospital to a paediatric intensive care unit in London. A total of 11 respiratory arrests led to 11 CPR events. Then there were the infections and the sepsis.  “We nearly lost her God knows how many times,” remembers Gary. “Billie was 15 months old before she came home with her ventilator and the tracheostomy, and all the training that came with this…”  Today, aged 18 months, Billie is a cheeky, funny toddler who loves attention and is learning new things every day. Today it’s clapping, and she’s been clapping since breakfast.  

Meeting their Roald Dahl Nurse Molly  But they are here and happy as a result of brilliant nursing care, and in particular as a result of the brilliant specialist care they received from their Roald Dahl Nurse Molly.  The family met Molly in December, and she is, they say, a nurse who gets things done.  “We were at that stage under 10 to 15 different teams, repeating the same story, or asking the same questions or chasing the right person to sort a problem. Molly cut through all that and was the person to speak to – the person who’d speak to everyone else on our behalf. She’d make sure they were all up to date with what was going on with Billie. And she’d be there on ward rounds so if it was a new consultant who didn’t know our case she’d be bang up to date and could answer their questions – and ask ours. I think we were noticing things in between doctor’s appointments, and we could talk to Molly as soon as we did, and she’d know who to speak to. She trusted our instincts and what we were feeling needed sorted, and we trusted her completely.  When we came home, we were wishing Molly was still with us. But then we had a problem accessing some medication through the GP. We just rang Molly and she was still with us – still in our corner. She was like ‘yes, I’ll have that organised…"

“Molly is so switched on, so compassionate, so supportive. And I wonder if funders know what life is like for families like ours who are put through the wringer…and how this Roald Dahl Nurse they have helped fund makes a difference. Molly knitted things together, and supported our move home, co-ordinating the care we needed. She was such an important person to have in our life when we needed support most.”  Roald Dahl's Marvellous Children's Charity works to establish vital Roald Dahl Nurses in hospitals across the UK, to provide specialist care for families like Billie's. To support Roald Dahl's Marvellous Children's Charity please visit: https://www.roalddahlcharity.org/donate/