World Prematurity Day - 15 weeks early: Brooks' story

Guest Blogger: Aaron

It wasn’t completely unexpected. My pregnancy was classed as high-risk, however, being born so premature, took my husband Ben and I completely by surprise.

One minute we were out at a family meal and the next minute we were in the back of an ambulance. Brooks was delivered less than 12 hours later… it all escalated so quickly.

Within 24 hours of being born, he was in critical condition. We knew he had a long, difficult and uncertain journey ahead of him. We didn’t even know if he would make it through the night.

Thank goodness he did, but he was a very poorly, premature baby.

He was five days old when we were offered a room at Ronald McDonald House Brighton. It’s free family accommodation, just over the road from the hospital, a short five-minute walk to his cot side. Not having to leave him to travel over 40 minutes home gave us huge comfort, otherwise it would have been unbearable.

At two weeks old, Brooks had to be transferred to Guy’s and St Thomas’ in London for a heart operation due to his premature birth. Our room was kept for us at the Brighton House and we returned a few days later where Brooks then spent three months being cared for in the Trevor Mann Baby Unit. He was extremely sick during this time, suffering from many of the complications associated with his extreme prematurity.

We had many anxious days when we just didn’t know what the next hour might bring. We couldn’t be with him every minute of the day, so having the Ronald McDonald House meant we had somewhere to escape to. We could have a moment to ourselves, make something to eat, chat with another family or get much-needed rest.

At three and a half months old, he reached full-term and was transferred from the neonatal intensive care unit (NICU) to the Royal Alexandra Children’s Hospital, again, within walking distance from the House – even closer in fact! I tried to stay by his side for the first two nights, but he still needed specialist care, so it wasn’t practical to be at his cot side, we wouldn’t have gotten any sleep… But we had the room at the House with a direct telephone line to the ward if anything went wrong.

Emotionally, I was the most exhausted I’ve ever felt in my life.

We continued living at the Brighton House, which had now well and truly become our ‘home away from home’. I was able to get a restful night’s sleep, which meant I could spend all day with my premature baby Brooks and was in a good state of mind to be able to be as involved in his care as possible.

I could do his teeny-tiny, premature laundry at the House and this helped prepare me for the moment the hospital would say we could finally take him home.

Being able to wash your own baby’s clothes may seem trivial, but as a first-time parent who had to hand over the care of her child to medical teams, this little chore was an absolute pleasure!

Unfortunately, before we were able to go home, we had another setback. Brooks was transferred to Great Ormond Street Hospital (GOSH) for emergency surgery to save his eyesight. Again, we returned just a few days later, back to what had become our new home.

He was in the Royal Alexandra Children’s Hospital for another two months before he was well enough to be discharged.

We spent a total of five and a half months living at Ronald McDonald House Brighton.

Though it felt like the longest, scariest journey of our lives – we look back at our time in the House with great fondness. A lot of the memories are very difficult, but it wasn’t all that way. It was an enormous part of our journey to becoming parents.

The House and it’s team were there to prop us up at the end of many long, stressful and upsetting days. We even celebrated some special occasions like Halloween and were able to take Brooks to meet the House team who had become more like family to us.

It was our home.

I hadn’t slept a single night at our own house since Brooks was born. After five and a half months away, it was very daunting to return to “normality”. Having a chat with one of the lovely members of the House team, or another family, had became our support network when we couldn’t have our own family on-hand.

We will never forget what living there did for our family.