Every year, The Sick Children’s Trust works with 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, 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.
To learn more about World Prematurity Day and how we support families with premature babies, please click here.
No time to plan
Kelly: I was just shy of 28 weeks pregnant when my waters suddenly broke. We rushed to our local hospital, but it quickly became clear they didn’t have the facilities to care for such a premature baby, coming 12 weeks early. Before I could take in what was happening, we were being transferred to Cambridge, nearly two hours away from our home in Skegness on the Lincolnshire coast. Everything was happening so fast.
Madeleine was born at five minutes past midnight on 3 November 2013 by emergency caesarean section. She weighed just 1.15kg, barely bigger than my hand and unable to breathe or feed on her own. I remember lying there on the maternity ward, surrounded by other mothers holding their babies, while I didn’t even know where mine was. I could hear the cries of newborns all around me, but not hers. That feeling of emptiness and helplessness is something I’ll never forget.
Jon: I didn’t know what to do or how to react. One moment we were getting ready for the third trimester, the next I was standing in a hospital room 100 miles from home with no idea what the next hour would bring. I went into survival mode. My focus was on keeping Kelly calm and making sure our families back in Skegness knew what was happening.
Deep down, I was terrified. Would I be driving home alone? Would it be just me and Madeleine? Or all three of us? I had no answers, only questions. For the first couple of nights, I slept in a chair beside Kelly’s bed. We were exhausted, emotionally and physically.
Then, on the third day, a man called Alan came to find me. He introduced himself as a volunteer from The Sick Children’s Trust and explained that there might be somewhere nearby where I could stay. Up until that moment, I hadn’t even thought about where we would sleep or how we would manage. I was just living hour by hour. But when Alan told us about Chestnut House, a ‘Home from Home’ located the floor beneath the neonatal intensive care unit, it felt like a lifeline.
Chestnut House provides ‘sense of peace’
Kelly: When we were told we could stay at Chestnut House, it was such a relief. Up to that point, we’d been living on cafeteria food and adrenaline. Having somewhere we could shower, eat, and try to rest properly made a huge difference. But most importantly, we were still in the same building as Madeleine.
Knowing we were only a lift ride away gave me a sense of peace I hadn’t felt since she was born. We could visit her at any time, day or night. And the phone in the room had a direct line to her ward, so even when I couldn’t be by her side, I could check on her whenever I needed to.
It’s hard to describe how important that was. When your baby is fighting for their life, every minute apart feels unbearable. Chestnut House gave us precious time we might not otherwise have had, to hold her tiny hand, to watch her take her first breaths on her own, to be there for every small milestone.
Jon: We stayed for five days while Madeleine was stabilised. They were the longest, most uncertain days of our lives, but also the most vital. The Sick Children’s Trust gave us more than a roof over our heads, they gave us closeness, comfort, and the chance to be a family when everything felt so fragile.
Financially, too, it was a huge weight off our shoulders. We didn’t have to think about hotel bills or petrol costs; we could just focus on Madeleine. Once we left Cambridge, we had no accommodation support, and the difference was immediate: long drives, splitting time between work and hospital visits, and constantly feeling torn between being there for our daughter and keeping life going at home.
“Two steps forward, three steps back”
Kelly: Madeleine’s first few weeks were terrifying. The doctors couldn’t tell us why she had been born so early, and we were warned that the journey ahead would be unpredictable. “Two steps forward, three steps back”, they said. She needed blood transfusions and was treated for a bleed on the brain. Everywhere we looked, there were wires, monitors, and machines keeping her alive.
But somehow, our little girl defied every expectation. Within days, she was feeding on milk when we’d been told it could take weeks. Her strength amazed everyone. Over the next month, she was transferred from Cambridge to Peterborough, then to Lincoln, and finally back to Pilgrim Hospital in Boston, the place where it all began. And then, on Christmas Eve, we got the news we’d been praying for: we could take her home. Walking out of the hospital doors, holding her in our arms, felt like our own Christmas miracle.
Jon: We were told she would probably need to stay in hospital until late January, but in true Madeleine style, she decided she was ready early. She’s been a fighter from the very beginning, and that determination has never left her.
Today, she’s a bright, sassy twelve-year-old who loves gymnastics, dance, and cheerleading. She’s thriving at secondary school. She only a slight squint and a bit of catching up to do in maths, but those things feel so small compared to what she’s been through. Watching her now, it’s hard to believe that she once weighed barely more than a bag of sugar.
Forever thankful
Kelly: Looking back, The Sick Children’s Trust was our anchor during the most terrifying time of our lives. They were the family we needed when ours couldn’t be there. At Chestnut House, we were surrounded by other parents who understood exactly what we were going through – people who were living the same rollercoaster of hope and fear. That community gave us strength when we didn’t have any left.
We’ll always be grateful for those few days in Cambridge. Without The Sick Children’s Trust, we might have missed out on moments we’ll treasure forever. Eighteen months after Madeleine came home, me and my mum took part in the Skegness to Boston Seabank Marathon, 26 miles of cross-country fundraising to say thank you. It was a small gesture compared to what the charity gave us, but it came from the heart.
Jon: When everything felt out of our control, The Sick Children’s Trust gave us something solid to hold onto. For that, we’ll always be thankful. Madeleine may have been born too soon, but she’s been proving people wrong ever since. And thanks to The Sick Children’s Trust, we were right there beside her every step of the way.
Kelly & Jonathan Cussons, Madeleine’s parents
