When we first found out we were expecting a baby, the last thing on our minds was how quickly and suddenly our world could be turned upside down. I had only just started a new job, and my husband Paul and I were about to head from our home in Northwood (North-West London) to the Cotswolds for a relaxing babymoon when I began to feel odd pains. At first, I thought nothing of it, but as they became more regular, we went to the hospital. That’s when we were told the words no parent wants to hear: I was in spontaneous labour at 23 weeks pregnant.
‘Tiny, fragile and barely surviving’
Everything after that became a blur. I was given steroids and a magnesium drip, but the hospital wasn’t equipped to handle such an extremely premature birth. Within hours, I was blue-lighted across London to the Royal London Hospital, one of the few hospitals with the right neonatal facilities. On 1 December 2024, Adam was born breech at 23 weeks, weighing 800 grams – less than two pounds. He was tiny, fragile, and barely surviving. His arm was dislocated during birth because he was so small, leaving it paralysed, and doctors told us he had only around a 40% chance of survival.
We spent that first night in shock. After being discharged from the maternity ward the next day, we faced the unimaginable prospect of being separated from our critically ill baby or trying to travel back and forth across London every day, which would have taken hours. That’s when the nurses told us about Stevenson House, a ‘Home from Home’ run by The Sick Children’s Trust next door to the hospital. From the moment we arrived, it became our sanctuary during the scariest, hardest time of our lives.
‘Minutes away from Adam’s cot’
Stevenson House gave is so much more than a bed to sleep in. It gave us the chance to stay together as a family. We were minutes away from Adam’s cot in NICU, able to deliver expressed milk around the clock, talk to doctors, and most importantly, be there to hold our son’s hand through every step of his fight.
Every day brought new challenges. Adam was born with severe chronic lung disease, a grade two brain bleed, and a hole in his heart. He needed 11 blood transfusions, aggressive ventilation, morphine and sedatives, endless blood draws, and invasive eye tests. On Christmas Day, after a precious morning where he seemed to be doing well, we went to my sister’s house for dinner. Just as we sat down to eat, the phone rang. Adam had deteriorated suddenly and might not make it. That drive back to the hospital was the worst of our lives. We thought we were going to lose him. But, thanks to the incredible NICU team who had become like family to us, Adam pulled through.
Hope in the darkness
Even in the darkest moments, Stevenson House gave us reasons to keep going. Volunteers decorated the house for Christmas and gave us presents for Adam. Local businesses cooked meals so we didn’t have to worry about food. Our families came to visit, and we were able to host them in the shared living 
room and kitchen, creating a little bit of normality when everything else was so uncertain.
Through all the fear, there were also milestones we will never forget. Holding Adam for the first time at 14 days old. Hearing his tiny cry at 19 days. Learning that his brain bleed was resolving instead of worsening, and that the hole in his heart had closed without surgery. We even registered his birth at Tower Hamlets Town Hall. Because he was born within the sound of the Bow Bells, he’s officially a Cockney!
Saying goodbye to Stevenson House
We stayed at Stevenson House for seven weeks, right through Christmas and New Year, until Adam was finally stable enough to be transferred to a hospital closer to home. Saying goodbye to the team there, especially Imtiaz and Pauline, and to the families we’d grown close to, was emotional. But it was time to begin the next stage of Adam’s journey.
The transfer itself wasn’t without drama – Adam’s lung collapsed in the ambulance, a risk we had been warned about, but once again he fought through. From then on, his recovery gained momentum. We moved from NICU to the Special Care Baby Unit at Watford, just 11 minutes from home. We could finally begin to imagine life beyond the hospital walls.
Homecoming
After 114 days in hospital, Adam was discharged on 24 March, his original due date. He came home on oxygen, which we carried everywhere with us, and we were told he would probably need it until he was around three years old. But in true Adam fashion, he surprised everyone. At nine months old, we celebrated him coming off oxygen altogether. His weaning journey went brilliantly thanks to the support of community nurses, and today he is a happy, jolly, giggly baby who has already exceeded so many expectations.
Adam still has challenges ahead. He needs surgery on his arm, and although he will need physio for life, doctors are optimistic that he will regain a good level of mobility. As with all babies born at 23 weeks, we don’t know what developmental hurdles he may face in the future, but right now he is meeting his corrected-age milestones and thriving.
Stevenson House ‘helped us survive’
Looking back, it’s hard to put into words how much The Sick Children’s Trust meant to us. Stevenson House didn’t just help Adam survive; it helped us survive. It gave us the strength to be there for him every single day, to read to him, sing to him, and tell him about his cats at home. We could be his parents, not just visitors, during the fight of his life.
In September, Paul took on the Great North Run to raise funds so other families can have the same support we had. We know first-hand that no parent should ever have to choose between being close to their child or facing financial and practical struggles. Thanks to The Sick Children’s Trust, we never had to make that choice. We will always be eternally grateful.
Anita and Paul – Adam’s mum and dad
