What does Christmas look like to you? We know that this year Christmas is going to be very different for everyone, but especially stressful and worrying for families with a seriously ill child in hospital. Together is where we want families to be this Christmas, families like Adele’s and Martin’s who will be spending Christmas by their son’s hospital bedside.
“Our twin boys, Joshua and Edward, were born at 34 weeks at our local hospital in Harrogate on 10 October 2020. As they were premature, they needed a little extra help before being allowed home and were admitted to the special care baby unit for 18 nights.” [Adele]
Joshua and Edward were greeted by their big brother, William, when they arrived home and from that moment, their parents looked forward to showing the boys off to friends and family. However suddenly just four days later, Joshua stopped feeding.
“In the early hours of the morning we called 111 and were told to take Joshua straight to A&E. He was rushed to the children’s ward where they tried to help him but he stopped breathing and crashed three times.” [Adele]
“We honestly thought he was going to die that day. We were standing just a few feet away, watching our son struggle right in front of us. It was frantic and hectic and he was just so poorly. They started to prepare us for the worst that he might not make it.” [Martin]
Eventually Joshua was stabilised but his condition didn’t improve. Adele and Martin were told that he needed transferring to Sheffield Children’s Hospital where medics could investigate what was making him seriously ill. As the Embrace team (transport for critically ill children to Sheffield Children’s Hospital) took Joshua to Sheffield, Martin followed in the car while Adele remained with Edward, who had also been admitted as a precaution, in Harrogate.
“Sheffield felt like a world away. Initially they didn’t really know what was wrong with Joshua and for the next three nights I slept in a chair next to his bedside. The horrendous thing was when the emergency button went off. All the doctors and nurses would rush into the room and I’d have no idea what was going on but I knew it was serious.” [Martin]
For two weeks Martin and Adele were separated, with Adele remaining in Harrogate with Edward and William while Martin stayed with Joshua in Sheffield. After spending three nights in a hospital chair by his son’s bedside, Martin was told about The Sick Children’s Trust and its ‘Home from Home’ Magnolia House. Magnolia House, which can be accessed via a corridor from the intensive care unit, gives families a warm and comfortable place to stay. Despite the coronavirus pandemic, the ‘Home from Home’ has remained open to keep families together. When Adele could travel to Sheffield, she brought Edward with her and the three stayed at Magnolia House.
“Magnolia House changed our whole world by allowing us to be by Joshua’s bedside. A baby needs their family, and we could be right there from the beginning with him. I don’t know how over these last few weeks we would’ve been able to be with Joshua and also be there for Edward without it. It’s really difficult to put into words how much Magnolia House means to us, we have been so focused on Joshua that we haven’t had chance to really step back and think about it but when we do we can see just how much support it has given us.” [Adele]
Joshua has been in Sheffield Children’s Hospital since the end of October and in that time has undergone two major operations for a life-threatening condition called necrotising enterocolitis or NEC, an infection which causes the bowel to die. His first operation wasn’t successful and he needed a second to remove 30cm of his bowel and have a stoma made.
“This was the scary part. He came out of his first operation and we just thought ‘the worst is over now, he’s on the road to recovery’. When I saw him in the intensive care unit he looked better but the next day he was almost double his size, having gained lots of fluid. He looked blown up and it was because the infection was still there and his tiny body was trying hard to fight it off. They were really worried about him, which made us worry.” [Adele]
“We realise just how important having the support of The Sick Children’s Trust has been when we think about times like that, when Joshua was really poorly. Right from the beginning, Magnolia House was there and it was that bit of support that we didn’t realise we needed. Without it, we would’ve fallen over. Life is so stressful at the moment and the logistics of being there with him would’ve been a nightmare.” [Martin]
“It can be very intense on the ward so having a space away does help. Magnolia House is really homey, so when you step inside you feel that you are somewhere that’s not the hospital and you can climb into bed and get some sleep. It really has given us a lot of help.” [Adele]
Following his second operation, Joshua is now making steady progress but his parents are preparing for Christmas and New Year in hospital.
“Joshua is doing OK but it will be a slow road to recovery, though things are looking upwards sometimes it feels like one step forward and one backwards. But he is making little steps and every step is important.” [Adele]
For seven weeks, Martin and Adele have been supported by Magnolia House and not only has the ‘Home from Home’ given them a place to stay it has also enabled Adele to continue breastfeeding both her babies.
“As Joshua has an issue with his gut it is so important that I can continue to give him his milk. By being at Magnolia House I can express and feed Joshua, while also feeding Edward and I can do it at any time, day or night, which is a big deal for us. If I was far away I wouldn’t be able to do this and it means a lot that I can.”[Adele]
As Christmas approaches, Martin and Adele are hoping to be able to see and spend time with all three of their children. Because of Magnolia House they will be able to wake up on Christmas Day and see Joshua first thing, then travel to Harrogate to see William open his presents from Father Christmas and spend time with Edward before going back to Sheffield to tuck Joshua in. By sharing their story, the couple are hoping to raise awareness for The Sick Children’s Trust and encourage people to support a family like theirs who will be in hospital this Christmas and together with their child.
“With our eldest, William, he had suspected sepsis as a baby and was treated in Harrogate for ten days, and I was able to stay on the children’s ward with him but this really hasn’t been an option with the pandemic and for both of us having that space away at Magnolia House has really helped us, especially with Edward being here too.
“It’s massively comforting to know we have Magnolia House. It’s made the impossible possible, without it we would’ve been struggling and worrying about where we would sleep rather than just focusing on Joshua. That means the absolute world to us and we can’t thank the charity enough for making this happen.” [Martin]
Martin and Adele Jefferson, William, Joshua and Edward’s parents