Early diagnosis
Isaac’s journey began long before he even came into the world. At 29 weeks pregnant, I found myself admitted to my local hospital with dangerously high blood pressure. As my condition worsened, despite maximum doses of medication, I was diagnosed with severe pre-eclampsia. Doctors quickly realized I needed to be transferred to Chelmsford, where better facilities for a
potential premature birth were available.
Isaac arrived a few days later, born via emergency caesarean section at 31 weeks, weighing 3lbs 1oz. As soon as he was born, he was taken directly to the neonatal intensive care unit (NICU), needing breathing support due to respiratory distress syndrome. I barely got to see him before they had to whisk him away.
The day after Isaac’s birth, doctors noticed his abdomen was swollen and discoloured. He still hadn’t passed his first stool, which pointed to a potentially serious intestinal condition. They told us he needed to be transferred immediately to a more advanced NICU that could handle complex neonatal surgeries if needed. That night, Isaac was transported to Cambridge by the amazing PANDR children’s ambulance service, with my partner Simon accompanying him. I was too sick to go along, still struggling with my blood pressure. Watching them leave was heartbreaking – I had seen my baby only a handful of times, and now he was headed to another city nearly two hours away.
Support from The Sick Children’s Trust
Simon arrived in Cambridge in the dead of night, having never been there before. He was exhausted and overwhelmed but determined to stay by Isaac’s side. A nurse in the NICU arranged a shower and a cup of coffee for him, and by the next morning, the staff had found him a room at Chestnut House, one of The Sick Children’s Trust’s ‘Homes from Home.’ This small comfort made an enormous difference; Simon now had a safe, comfortable place to stay close to Isaac, without worrying about finding accommodation or commuting from far away. For me, still stuck in the hospital, knowing he could be with our son meant everything. I felt reassured that Isaac was not alone.
A few days later, I was finally stable enough to join Simon in Cambridge, where I spent several days recovering as an inpatient. When I was discharged, I was able to stay at Chestnut House too. Having that space allowed me to focus on my recovery while also being close enough to Isaac to visit him anytime I wanted. Chestnut House became a sanctuary for us, a place where we could take a break from the endless cycle of medical updates and just be together as a family.
Isaac’s stay in Cambridge was thankfully brief, as his intestinal condition improved without surgery. Ten days later, he was stable enough to return to our local hospital in Southend. I thought we were nearing the end of this difficult journey, but our relief was short-lived. Over the next few weeks, Isaac experienced cycles of abdominal distension, suspected infections, and even sepsis. Every time we felt he was improving, there seemed to be a new setback.
Eventually, it was clear Isaac needed more advanced care, so he was transferred once again, this time to London. There, doctors placed a long line to provide him with essential nutrients he couldn’t yet get from feedings. They told us he was “post-starvation” on arrival, a phrase that broke our hearts. Once again, The Sick Children’s Trust was there to help, offering us a place at Stevenson House, another ‘Home from Home’ right by the hospital.
Being at Stevenson House allowed me to be constantly present for Isaac. I attended all his medical rounds, asked countless questions, and was there to change his nappies and feed him. These little moments of care were precious—they helped me feel like a mum in the middle of a very clinical, sometimes overwhelming experience. Without Stevenson House, I would have missed those moments, as travelling back and forth would have been a logistical nightmare.
Treatment and update
Isaac’s journey in London was difficult. He developed a heart murmur and a PDA and contracted an astrovirus infection, which required him to be isolated. After two weeks of ups and downs, he
was finally stable enough to return to Southend, and we made the midnight journey back home.
On April 30, what would have been his original due date, we were finally able to bring Isaac home. It felt surreal, like a chapter had ended, and we were finally free to celebrate him fully. But the experiences of those months had left deep marks on both Simon and me. I’m currently seeking therapy to process everything, from the trauma of his birth to the weeks of waiting, setbacks, and surgeries.
Looking back, we genuinely don’t know how we would have managed without The Sick Children’s Trust. Chestnut House and Stevenson House provided more than just a bed and a shower. They gave us a stable, supportive environment where we could be present for Isaac, even when everything felt out of control, which was crucial for our mental wellbeing. The shared kitchens allowed us to meet other parents going through similar experiences, giving us a community during a very isolating time.
Isaac is now eight months old and still tiny, but he’s resilient. While we are preparing for another surgery in the coming year, he’s absolutely thriving. Every day, he surprises us with his strength, and we feel deeply grateful for the support we received along the way, which helped us get to this point.
Chellsy Manning – Isaac’s mum
