My son, Rorie, is a delight. He’s the happiest baby I know and continues to defy doctors’ expectations every day.
I gave birth to Rorie at full term and everything seemed fine. However, just 14 hours into his little life he started to have frequent seizures. Despite being full term, Rorie was admitted to the neonatal intensive care unit (NICU) at Burton Hospital. He looked big and healthy in comparison to the tiny premature babies surrounding him, but he wasn’t as healthy as he seemed. He was seriously ill.
For the next two weeks, my husband Ross and I travelled to and from the hospital every day. Much of that time was spent not knowing Rorie’s full diagnosis. It wasn’t long before he was diagnosed with hydrocephalus – a build-up of fluid on his brain which was causing a significant and life threatening amount of pressure.
For the first few days we spent the night either in a room on the maternity ward sharing a single bed or sleeping in chairs next to our son’s incubator. We live just outside of Lichfield, so in terms of distance it wasn’t too far to travel each day once we had made the difficult decision to leave the hospital without our son, to go home to try and rest. At this most difficult time we were so lucky to have all of our friends and family around us. But no matter how much support you have, it’s awful having your newborn baby in hospital. And even more so when they are unexpectedly transferred to a different one miles away from home.
Rorie required specialist neurological treatment at Sheffield Children’s Hospital, 80 miles away from home. It all happened so quickly. We were sent home to pack a bag before driving to meet him at the specialist hospital in the early hours of the morning. We weren’t sure what was happening and we didn’t know how long we’d be there for. We had no plan.
We arrived by 2am, and stayed on the ward that night, but very quickly it became apparent we weren’t going to be in Sheffield for a short stay, and there was no way I was going to leave Rorie. Lots of family members offered to support us financially in hotels, which was amazing and so generous of them. But before we had to pursue that option, we were told about a place called Magnolia House, free ‘Home from Home’ accommodation run by The Sick Children’s Trust. We were handed a key first thing the following morning and it was a complete godsend. Simply put, the nearest hotel wouldn’t have been close enough and at Magnolia House, you don’t even have to leave the front door to be with your child. There’s a corridor leading from the house to the wards, which means you are there, within minutes, by your child’s hospital bedside.
Rorie had a grade three/four bleed to the brain, which was triggering further issues in other parts of his body. He was really ill. The build-up of fluid on his brain was causing his head to swell and his eyes were being driven downwards by the pressure. It was so scary to see.
He underwent an MRI scan, which revealed mass pressure on his brain and the doctors told us he urgently needed it drained. A needle was inserted into his brain and 45ml of blood was removed. Rorie’s head required daily draining, and a way to do this less invasively was for the medical team to perform surgery to insert a reservoir for them to use as a ‘tapping’ point, and hopefully prevent further brain damage. We were then told that there was nothing more they could do apart from continue to drain the fluid and try to build his strength up, which would take several weeks. It was absolutely horrendous. Amongst the stress of daily procedures, we were constantly being prepared for the worst. We were told Rorie would never suck a bottle – which he soon got the hang of, and we knew we were to expect other developmental delays or disabilities in the future. But no matter what they have said Rorie will always be our perfect.
Magnolia House was really important to us, because it meant we could be right beside our son as a family when we all needed each other the most. We were able leave the ward when it all got a bit too much to gather our thoughts and be the strong parents Rorie needed us to be when we were with him. We could retreat to Magnolia House at night, where we were safe in the knowledge that if anything happened, the nurses would call and we could be with our son within a few minutes. At Burton Hospital, every night we had faced the agonising journey home (without our boy) knowing we had a sleepless night ahead, worried that the phone might ring and we’d have to drive half an hour before being back at Rorie’s bedside. We had been at breaking point, trying to cope with the uncertainty and nights away from our son’s bedside. Had it not been for Magnolia House, the stress and strain would’ve been much more difficult to deal with.
Over the seven weeks we were at Sheffield Children’s Hospital, we found Magnolia House gave us a huge sense of normality. Ross and I are so lucky to have such amazing friends and family. They would regularly make the two hour journey to the hospital to support us all and having Magnolia House there meant we could pop over to grab a cup of tea in the kitchen or we had somewhere to wait while doctors carried out further procedures when needed.
As the weeks went on, his draining, also known as ‘tapping’, was down to every 48 hours. It then became evident that despite the fluid running clearer each time, Rorie wasn’t able to deal with it himself and would need surgery to help improve his condition. The decision was finally made to send Rorie to theatre to have a shunt fitted, but days before the operation he turned a corner. Since then he has not needed any further interventions or treatment and the news we’d been waiting for also arrived. Rorie was finally ready to come home, two months after being born.
Rorie has significant brain damage, but I’m so pleased with how well he’s doing. A baby’s brain is a miracle and we are doing all we can to make sure his progress continues. He loves attending many classes each week including: Hartbeeps, Baby Development, Baby Discovery and Sensory. He attends physio regularly and we go to a Mini Mover’s class, which includes everything from concepts to speech. And every week we go swimming. Rorie is so strong and I know he is going to come on leaps and bounds!
I’ve never known of anyone having a seriously ill child in hospital, and didn’t once imagine it would ever happen to my family. And when you are thrown into a situation that is completely out of your control and that you could never be prepared for, it’s extremely unnerving. But with a charity like The Sick Children’s Trust, that gives you some stability and introduces you to others who are going through something similar, the situation is somewhat better. With that in mind, Ross and I are raising awareness of The Sick Children’s Trust, and a lot of our family and friends are joining in too! My Dad’s school has raised £500 for the charity and Ross, along with our wedding ushers, best man and other friends have taken on the Lichfield Half Marathon to help us cover the cost of our stay at Magnolia House. Even though we were never expected to pay a penny for our room, we want to ensure that a room is there for another family in their time of need.
Kat Adams, Rorie’s Mum