The Sick Children’s Trust is joining neonatal charity Bliss to mark World Prematurity Day on 17 November. This year’s #NeonatalVoices campaign brings together parents, grandparents, nurses, volunteers and supporters to share their experiences of neonatal care.
Among those voices are Kelly and Jonathan Cussons from Skegness, whose daughter Madeleine-Rose was born 12 weeks early in 2013. Their story shines a light on the importance of keeping families together when their baby is critically ill – something our Chestnut House ‘Home from Home’ made possible throughout Madeleine’s time at The Rosie Hospital in Cambridge.
No time to plan
Kelly’s pregnancy had been smooth until, just shy of 28 weeks, her waters suddenly broke. “We rushed to Pilgrim Hospital in Boston [Lincolnshire],” she recalls, “but it quickly became clear they didn’t have the facilities for such a premature baby. Before I could take in what was happening, we were being transferred to Cambridge, nearly two hours from home. Everything was happening so fast.”
At five minutes past midnight on 3 November 2013, Madeleine-Rose Butler-Cussons entered the world weighing just 1.15kg, barely bigger than her mum’s hand. Born by emergency caesarean, she couldn’t breathe or feed on her own.
“I was surrounded by other mothers holding their babies, while I didn’t even know where mine was,” says Kelly. “I could hear newborns crying all around me, but not her. That emptiness and helplessness is something I’ll never forget.”
For Jonathan, the first few days were a blur. “One moment we were planning for the third trimester, the next I was standing 100 miles from home with no idea what the next hour would bring. I tried to stay calm for Kelly, but deep down I was terrified.”
Chestnut House provides a “sense of peace”
Then came a knock on the door that changed everything. A volunteer named Alan explained there might be somewhere nearby for them to stay – Chestnut House, one of The Sick Children’s Trust’s ten ‘Homes from Home’, just a floor below the neonatal intensive care unit.
“Until that moment, we hadn’t even thought about where we’d sleep,” says Jonathan. “When Alan said there was a room available, it felt like a lifeline.”
For the next five days, Chestnut House became their sanctuary.
“Having somewhere to shower, eat and rest made such a difference,” says Kelly. “But most importantly, we were still in the same building as our daughter. Knowing we were only a lift ride away gave me a sense of peace I hadn’t felt since she was born.”
A phone in their room connected directly to the neonatal unit, allowing them to check on Madeleine at any time. “When your baby is fighting for their life, every minute apart feels unbearable,” Kelly explains. “That phone, that closeness, it meant everything.”
Those five days were the longest and most uncertain of their lives, but also full of small miracles — Madeleine’s first breath without a ventilator, her first feed, the first time they held her hand.
“The Sick Children’s Trust gave us more than a roof,” Jonathan says. “They gave us closeness, comfort, and the chance to be a family when everything felt so fragile.”
“Two steps forward, three steps back”
Madeleine’s journey was far from over. She needed blood transfusions and treatment for a bleed on the brain, and her parents were warned it would be “two steps forward, three steps back.” But little by little, she grew stronger. Within weeks, she was transferred between hospitals – first Cambridge, then Peterborough, Lincoln and Boston – each move bringing her closer to home.
Finally, on Christmas Eve, the family heard the words they’d been longing for: Madeleine could come home.
“She was supposed to stay until late January,” Jonathan smiles, “but in true Madeleine style, she decided she was ready early.”
Today, she’s a bright, confident 12-year-old who loves gymnastics, dance and cheerleading. “You’d never believe she once weighed little more than a bag of sugar,” Kelly laughs.
Looking back, both parents say Chestnut House was their anchor through the darkest days. “They were the family we needed when ours couldn’t be there,” Kelly says. “At Chestnut House, we were surrounded by other parents who understood exactly what we were going through. That community gave us strength when we didn’t have any left.”
Each year, The Sick Children’s Trust supports thousands of families like Kelly and Jonathan’s, providing a warm and welcoming place to stay, free of charge, when their child is seriously ill in hospital. It costs the charity £40 to support one family for one night, but for parents like Kelly and Jonathan, that help is priceless.
“Madeleine may have been born too soon,” Jonathan reflects, “but she’s been proving people wrong ever since. Thanks to The Sick Children’s Trust, we were right there beside her every step of the way.”
