In the minutes after William arrived, Dan and I watched on helplessly, as doctors and nurses battled to establish an airway so our baby could breathe

At 23 weeks and 5 days into my pregnancy, I began to feel like I was coming down with something. I thought the best thing was to sleep it off, so I kissed my husband, Dan Hyams, and daughters, Olivia, eight, and Marion, four, goodnight and I went up to bed. Never in my wildest dreams did I imagine I was going into labour.

At 3am I had the most horrendous a tummy ache which lasted for an hour. I began to worry. Then I started to feel something else happen. As a nurse and mother of two, I recognised the familiar sensation. I was having contractions every three minutes.

I called my Dad and asked him to come over immediately to look after the girls. I packed a small overnight bag, which included a camera to take pictures just in case my baby didn’t survive. I would need memories.

By the time Dan and I arrived at Southend University Hospital I was already 5cm dilated. The team of doctors attempted to slow down my labour but it didn’t work. We were then told something that no parent wants to hear. Without a heartbeat, they would not resuscitate our baby because it was too premature.

Strangely I was very calm and focused. I kept saying to Dan that I could feel the baby kicking. The monitor was also showing our baby had a strong heartbeat so I kept assuring him that we were all going to be fine. I had a scan to determine the size and weight and the doctor asked if we wanted to know whether it was a boy or a girl. That was when we learnt we were having a boy! William arrived naturally at 13.41 on 7 June 2017, weighing just 1lb 6oz.

William didn’t breathe for 30 minutes. But miraculously he had a heartbeat. Dan and I watched on helplessly as eight doctors and nurses worked on his tiny body, battling to keep him alive.

Finally, once William was intubated and started breathing he was taken up to the special care baby unit (SCBU). That is when I began to haemorrhage and was rushed into theatre. Dan stayed with me, waiting outside the operating room, until he knew I was going to be fine and then he went up to SCBU to be with William. Our baby would be transferred to The Royal London Children’s Hospital within minutes to get him the specialist treatment he needed. Thankfully, they waited until I had seen him one more time before they left.

We couldn’t go with William. I was still in hospital and Dan needed to go home to be with the girls. He drove to London the next morning and whilst he was on neonatal intensive care unit (NICU) he heard about a charity that supports families with seriously ill children in hospital with free ‘Home from Home’ accommodation. Dan had never heard of The Sick Children’s Trust, but the ward clerk told him he would make a call and to see if there were any rooms available at the charity’s Stevenson House. Whilst Dan was in London with William that day, I was discharged and went home to wait for him. We broke the news to the girls that they had a new baby brother, but that he was very poorly and needed to stay in hospital.

When Dan and I arrived at NICU the next morning, I saw William for the first time in over 24 hours. It broke my heart. He looked so vulnerable. He was sedated, intubated and on a ventilator in a humidified incubator to stop his skin from drying out. His skin was almost translucent and looked red raw. And his eyes were fused shut because he wasn’t ready to see the world. I began to worry about where we were going to stay and what to do about the girls. I felt torn between them and my seriously ill baby – how could I ever leave his side? As the worry began to engulf me, a kind man approached us called Alan. He was the manager of Stevenson House, which Dan had been previously told about. He explained all about The Sick Children’s Trust and what the charity could do for us. He said that there was a room available, which was completely free of charge, just a few minutes from NICU.

When we were shown around Stevenson House for the first time we were astounded. We were shown a large family room, which had three big beds inside – plenty of space for all four of us!

That first week, the girls stayed with us and didn’t go to school. They were very distressed and we needed to be together as a family. The staff at Stevenson House were so fantastic with them and knew exactly what to say to cheer them up. I will never forget how kind they were to my daughters. Stevenson House really helped the girls cope, which in turn helped us to cope! They loved the TV rooms and the playroom and I was able to cook us normal family dinners in the kitchen – being so young that kind of continuity was very important for them.

William’s life at the start was very rocky. The doctors made it clear to us that in order to survive, he needed to grow without any further complications. But at two weeks old – his lungs were still severely underdeveloped and he wasn’t getting enough oxygen so his body began to close down and his kidneys began to fail. However, extraordinarily, he pulled through and after 45 days on a ventilator, our little fighter could finally breathe all on his own for the first time. It was really tough because William was often too unstable to be cuddled during this time and the doctors told us that skin-to-skin contact was best for him, but not being able to pick up our baby was incredibly tough and there were a lot of tears. During these days when I couldn’t hold William, I also couldn’t feed him. But thankfully, there was a breast pump available for me to use at Stevenson House, so even if I couldn’t hold him I was able to give William my milk and I could express privately in my bedroom.

As William began to show signs of improvement, Dan would go home during the week to be with the girls so that one of us was there when they got home from school. This meant that I was often alone in London. It was really hard for me to be without my family, but the staff at Stevenson House saved me – I wouldn’t have coped without them – they were happy and cheery. It was the small things that made such a difference during that time. After a tough day on NICU with William, I would go into Alan’s office and we would have a cup of tea and a chat. Also, there were other families with premature babies who were going through a similar experience which meant we could share our stories. We also read the other stories in the folder at the house written by previous families, which gave us hope.

Stevenson House made us feel safe and welcome. The house was a second home and the girls loved it, especially when there were families with children there because it meant they had others to play with. And then of course they had Alan – he was their fun uncle! To this day they still talk about him. Without the Stevenson House our lives would have been very hard and stressful.

Three months later, William was transferred back to Southend. Almost a month before his due date and the next day I successfully breastfed for the first time. It was tough no longer having Stevenson House right there next to William, but somehow we managed and we finally got our son home on 8 October.

Since, William has had several admissions back to hospital. But so far 2018 has been a good year for us. We are full of hope and optimism for the future and can’t thank Stevenson House and The Sick Children’s Trust enough for what they did for our family last year.

Anita Hyams, William’s mum.