Joshua was born full-term a healthy and happy baby. When he was a week old we travelled from London to Cumbria to stay with my parents.
Shortly after we arrived Joshua started to have issues with being sick. At five weeks old we took him to casualty after he vomited a green substance. However, the local hospital could only do so much. There aren’t any main hospitals near my parent’s home so he was transferred to Great North Children’s Hospital in Newcastle where he could be treated for sepsis and meningitis, which is what they thought he may have.
Once at Great North Children’s Hospital they did all sorts of tests on him. He was displaying very dangerous signs of infection but a cause was never found. This was an incredibly difficult time – Joshua was in a terrible state – he had lost a lot of weight because he couldn’t hold any of his food down. One night he lost 10% of his body weight in just a few hours. He was just skin and bones. The doctors were confused – they couldn’t figure out why his body wasn’t absorbing food.
I didn’t leave him. I literally stayed in the bed next to his cot for the whole time we were in Newcastle. Joshua’s dad was staying in a house run by a charity at the hospital for the parents of ill children. This was such a help but it was still a really difficult time. He was tired and anxious about Joshua but also worried about practical things like not being able to work and our family’s financial stability and future.
After more tests they found an abnormality in Joshua’s cells and that’s when they came to the conclusion that he may have an auto-immune disease. At this stage we were anticipating a hospital stay of many more months in Newcastle as we were told Joshua was too fragile to travel the distance back to London by road. Emotionally we were drained and exhausted and logistically we had no idea how we were going to stay in Newcastle for the foreseeable future; we were still miles away from home.
Hope came when the nurses told me about Lucy Air Ambulance for Children (Lucy AAC). I didn’t even know a service like Lucy AAC existed. This amazing charity organised the transfer of Joshua by plane to London and they made it happen really quickly. We made contact with Lucy AAC and in the next couple of days we were on the plane. Before this experience we wouldn’t have known that there are no funds within the NHS for air transfers like this; so this would have to be done by a charity.
I travelled with Joshua on the plane. The pilots and nurses were incredible. The intensive care nurse chatted to me the whole way and reassured me. The service Lucy Air Ambulance for Children provides is both caring and professional.
Once we landed, Joshua was taken to Chelsea and Westminster Hospital where he was stabilized. For the next three weeks we were all still really unsure about what was going to happen to him. They were desperate to start him eating again normally.
However, once in London things seemed to turn around. Joshua started to take feeds well and they upped his feeds throughout the day. After resting his stomach, they retracted the diagnosis of auto-immune and now it seems like he has a specialist dietary condition.
The doctor took all his wires off of him which meant I could actually pick him up and carry him around the hospital. Joshua had never been one of those babies who liked to be put down. He was always in my arms before he went to hospital but I hadn’t been able to hold him properly for a very long time. This was a significant moment that I will always remember.
The day Joshua came home happened much more quickly than everyone expected. Before we left the hospital, one of the nurses said to us she believed Joshua progressed so quickly once we were back in London because we were calm and weren’t stressed. Being back home really helped our mental health which helped us care for our baby in the way he needed.
We’re coming up to his first birthday now and he’s really healthy. He is such a happy baby now.
With special thanks to Simpson Thacher Bartlett LLP for funding Joshua’s flight.