“It was 4am and I was in an ambulance looking at my newborn son, covered in tubes and wires in an incubator, fighting for his life. I was surviving on adrenaline having had no sleep for two days, leaving my partner, Claudia, back home in Colchester after giving birth with no idea what to expect when I arrived in Cambridge.” [Ben]
Claudia Eden and Ben Cirne looked forward to the arrival of their newborn son, Hugo. As first-time parents, they had no idea what to expect when Claudia went into labour – but what happened was far from anything they’d ever imagined.
“I was overdue at 41 weeks and three days so after I had my third sweep I started to get contractions. Coming to the end of my labour, Hugo’s heart rate began to drop so the team decided to get prepared for a instrumental birth. Luckily I managed to quickly get him out as I couldn’t wait for that first cuddle with my son, but as they lay him on my chest he was still and not breathing.” [Claudia]
Sirens, buzzers and medical staff filled the room in an attempt to save Hugo’s life. He was resuscitated and intubated to help him breathe before being rushed to intensive care. The couple were left dazed and confused at what had just happened in a matter of moments.
“It was horrific. We never expected this to happen, we’d researched every eventuality but never thought of this. By this point Claudia had been in labour for 48 hours and she was in a lot of pain but the moment he was born and I was asked to cut the cord we were elated and so emotional. When the buzzer went off, those feelings disappeared and were replaced with confusion and fear. It felt chaotic and we had no idea what was going on.” [Ben]
As Hugo was born not breathing his brain had been starved of oxygen and he needed specialist treatment to prevent brain damage, which was not available at Colchester Hospital. To prevent brain injury he needed to undergo therapeutic hypothermia, also known as cooling treatment, for 72 hours. The treatment involves placing a baby on a mattress filled with cooled water for 72 hours, reducing their temperature by a few degrees before warming them back up. For it to be effective, a newborn must undergo this treatment within the first six hours of their life.
“We were told that the Acute Neonatal Transfer Service (ANTS) were on their way to take Hugo to Cambridge so he could receive the help he needed. I’d only had a glimpse at my baby and was worried I wouldn’t see him before he left, but I was allowed to say hello. It was horrendous seeing him non responsive, in a coma and wired up to all sorts of machines. That night, I put on a brave face as they left but my heat was breaking on the inside.” [Claudia]
When Ben arrived at The Rosie Hospital, located at the Addenbrooke’s Hospital site, he was told about The Sick Children’s Trust. The Sick Children’s Trust gives families a warm and comfortable place to stay just moments from their child’s hospital bedside. Two floors below the neonatal intensive care unit (NICU) is Chestnut House, an eight bedroom ‘Home from Home’ where parents can stay, free of charge.
“I hadn’t slept for two days and was in such a daze. It was a weird moment as I was so tired, but so alert, and had so many thoughts going around in my head. After Hugo was settled into NICU, I met someone from The Sick Children’s Trust who took me to Chestnut House. They gave me keys and told me that Chestnut House was a place that both Claudia and I could stay while Hugo got better. I managed to get a few hours’ sleep that night and when I woke up headed straight upstairs to Hugo in NICU. As I sat by his incubator I realised while we were in this situation, in a hospital with our newborn far away from home, that Chestnut House could give us everything that we needed in order to be with Hugo and to look after ourselves.” [Ben]
Both Claudia and Ben were able to stay at Chestnut House while Hugo was treated in NICU. Chestnut House, which has a living room, kitchen and laundry facilities, meant that the couple could step away from NICU when things got too much and speak to staff and other families going through something similar.
“We were walking into the unknown and the staff at Chestnut House made us feel so calm and reassured at such an uncertain time in our lives. We found it invaluable that there was always someone there if we needed to talk. The staff were just fantastic and really understanding. People don’t understand unless they have been in that situation, and they don’t understand just how much The Sick Children’s Trust does for a family whose child is in hospital. The staff deal with families like ours every single day. There is no false hope… there is just someone who knows, that will sit with you and listen. They told us that there would be ups and downs, it wasn’t going to be plain sailing and that it was OK to be upset and to cry. I was suffering quite badly following the birth so to know that I could just go straight downstairs to Chestnut House to lie down was a huge relief.” [Claudia]
After 72 hours of being cooled, Hugo’s body temperature was gradually warmed back up over the course of a day. The following day, his parents finally had their first cuddle.
“It wasn’t until Hugo was four days old that we finally got to hold him. When they gave him to me I was so worried that I would trip a wire, but the doctors were there to reassure us. As I held him, all the feelings came back of what we had been through but mainly I was overwhelmed with love.” [Ben]
Over the following days, Hugo was weaned off breathing support and Ben and Claudia started to look forward to taking their little boy home.
“As we started to look forward to taking Hugo home, we began to realise that we were considerably lucky. At Chestnut House we met lots of parents and some of the conversations we had with them were really hard. They had been away from home with their child in hospital for months. We were there for a week. It was a major thing for us to have a place to stay, and from speaking to parents and through our own experience we know just how important it is for others.” [Ben]
Since leaving hospital in December 2019, Hugo has been doing really well at home enjoying the company of both his parents who have worked from home during the coronavirus pandemic. Hugo has just celebrated his first birthday with his parents at home.
“Hugo is a strong little fighter who is crawling and climbing everywhere, he’s ticked off all his developmental milestones so far and is even more advance in some areas. After we left hospital we were so excited to show him off to the world, but all of a sudden lockdown happened. We expected Hugo’s first year would be tough, but not this tough! The good thing about lockdown is that we have been able to spend so much time with our son and been able to watch him grow for an entire year – something not many parents get to do.” [Claudia]
Over the last year, Ben and Claudia have been supporting The Sick Children’s Trust to thank the charity for its support and to give other families a ‘Home from Home’ when they need it most. The couple raised over £700 through a Facebook fundraising page, they have become regular monthly donors, bought gifts for the ‘Homes from Home’ and most recently become a Secret Santa to another family by purchasing an online gift of a three nights stay.
“The Sick Children’s Trust made a horrific situation that much easier. Without it our only options would’ve been to drive from Colchester every day, which wasn’t really an option because we couldn’t face leaving Hugo, or we would’ve had to ask our family and friends to help raise around £1,000 to pay for a hotel nearby and food. This would’ve been an added worry though and a lot of stress which we didn’t have because of Chestnut House. It simply made the whole situation much more manageable, which is what we want to give to another family during the most horrendous time of their lives.” [Ben]
Ben Cirne and Claudia Eden, Hugo’s parents
