The sense of solidarity at Stevenson House is what helps you get through the tough days.

At 34 weeks pregnant, Jeff and I were devastated to find out that our baby had a 50% chance of survival. Our daughter, Mabel, was diagnosed with a congenital diaphragmatic hernia which meant that there was a hole in her diaphragm and some of her organs had moved up into her chest cavity which was restricting the growth of her left lung.

If Mabel did survive, we were told she would need to be ventilated immediately after birth and would need to undergo major lifesaving surgery once stable. Queens Hospital in Romford, where we live, couldn’t cope with her complex needs so we were referred to The Royal London Children’s Hospital where I’d have to give birth.

The weeks leading up to her birth were the most terrifying of our lives. There were no guarantees that she’d survive. As much as we tried to stay positive, it was an extremely emotional and difficult time for our entire family. The thought that comforted us was that Mabel would be in the best place. The place that would give her the best chance of survival.

When Mabel entered the world, we were filled with pride and joy. We knew she was a fighter from the beginning. Despite being told she may not cry, she did. And we took this as a sign that she was willing to fight for her life. Mabel was placed on my chest momentarily being taken away, intubated and transferred to the neonatal intensive care unit (NICU). The hours that followed passed in a blur of exhaustion and worry, but I will never forget the kindness and care shown by the registrar and the rest of the delivery team. It was extremely comforting.

At just 15 hours old, we had a conversation about Mabel’s condition with the consultants that we will never forget. And which we hope no parent will ever have to go through. We needed to prepare for the worse.

That evening felt endless, but thankfully the amazing team managed to stabilise our daughter. The next morning Mabel was still with us.

When we were told about Mabel’s condition, we knew she could be in hospital for a while. Luckily, my mother was already flying over from Australia to help look after our son, Joey, which took some pressure off our shoulders. But we hadn’t thought about where we would stay in London. Thankfully, on NICU we were told about free ‘Home from Home’ accommodation run by The Sick Children’s Trust. It was called Stevenson House. The House Manager, Alan, met Jeff on NICU, offered us a room and took Jeff over – it was just a few minutes away. Jeff was so emotional and overwhelmed by Alan’s kind and caring nature and how amazing the house was. From then up until the moment Mabel was discharged nine weeks later, Stevenson House became our home.

Simply put, Stevenson House was our lifeline. It meant that we could see Mabel every day and spend as much time with her as possible. With my mother taking care of Joey, we could both focus on Mabel and be there for each other. We also didn’t feel constantly torn between our children because Stevenson House welcomed Joey, who would stay on the weekends. This way we could all be together. Joey adored Stevenson House, but more importantly it meant he could visit his little sister and start to understand who she was.

Despite nearly losing our daughter in her first 24 hours of life, Mabel began to gradually improve and build her strength up. At ten days old, she underwent major surgery to move the organs from her chest cavity, close the hernia and repair her diaphragm so that her lung on the left side could develop.

It wasn’t until Mabel was three weeks old that I was able to hold her properly – something many mothers take for granted. But it was one of the most joyful days of my life, especially as Mabel’s recovery was slow and she suffered a number of rare complications which took time to diagnose. She was ventilated for a total of 44 days before they diagnosed another problem. Mabel had developed a rare condition known as a chylothorax which meant that she could not tolerate any milk feeds and would need to be fed a special medical formula. Fluid was pooling around her lungs making it impossible for her to breathe on her own. She required another small procedure where 135ml of fluid was drained off her chest. This enabled her to move and in the days that followed she finally woke up and became very active. Finally, they were able to take her off the ventilator and incredibly just over a week later she was breathing entirely on her own without any oxygen support. It was a miraculous recovery.

I visited Mabel every day. And I would often start my day by having breakfast and a chat with Alan in the communal kitchen. Those discussions with him helped to keep me sane and also gave me time to prepare for what the day ahead would hold. Whether that be good or bad news.

This type of emotional support is very much needed when you have a seriously ill child in hospital. What makes Stevenson House so special is the combination of benefits staying there brings. It’s not just the fact that you’re minutes from your child’s bedside, or the amazing team on hand, it’s being surrounded by other families who have children in hospital too. The sense of solidarity at Stevenson House is what helps you get through the tough days. Each day someone would ask how Mabel was doing and vice versa. Knowing that there were other parents going through similar experiences and being able to reach out and offer each other support helped create a positive sense of community and care for all the sick children.

By being at Stevenson House, we could also be involved in Mabel’s care. We saw the staff every day for nine weeks and were so comforted by their level of professionalism and commitment. We want to express our lifelong gratitude to all the staff on NICU for what they did for us. We still regularly talk about how they went above and beyond, not just for Mabel, but all the sick babies on NICU.

Nearly a year on, we’re delighted to say that Mabel is incredible. She’s doing so well and is just about to celebrate her first birthday. Mabel is a very happy and curious baby who is adored by her parents and big brother. Her birthday will be a very joyous and monumental occasion, celebrating our little fighter. 

Marlo Rankin, Mabel’s mum.