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To have that access to your child in hospital is so important and something every parent with a seriously ill child should have.

News   •   Jan 30, 2019 13:03 GMT

"Jacob is crawling and really trying to walk now - he's doing great!"

We knew before the day Jacob was born that we wouldn’t be taking him home straight away. In fact, Jacob would need major surgery the very next day, and he would spend the first three weeks of his life recovering in Leeds Children’s Hospital. We were frustrated to say the least – like any other first-time parents all we wanted to do was take our newborn baby home.

Because of the complex surgery, I had to give birth to Jacob in Leeds – at least half an hour’s drive from our home in Bradford. It would’ve been so easy for the panic to set in about how my husband, Nathan, and I would be able to stay near our son, but fortunately we were told about Eckersley House.

Eckersley House is free ‘Home from Home’ accommodation run by The Sick Children’s Trust and although we couldn’t book a room for Jacob’s arrival date, we were just relieved to know there was a chance that we could be close to him. Neither of us could imagine being separated from each other or our baby boy – especially when he had so much to go through during his first few days.

At a pregnancy scan, we were told that Jacob had myelomeningocele – a form of spina bifida. In the first trimester of my pregnancy, Jacob’s neural tube (brain and spinal cord) failed to close and the neural tissue was exposed through his back. Without protective covering of the skin, the spinal cord becomes damaged and spinal fluid often leaks. Therefore, Jacob needed an operation as soon as possible to avoid any further damage. At this stage, we were told the worst case scenario. Everything that could go wrong. Jacob might not ever crawl, walk or even be able to sit up. It was difficult to listen to the challenges he’d face and possible surgeries throughout his life. But there was no way we were ever going to give up on him. Whatever challenges we were faced with, he was our baby and we were in it together.

Eckersley House has been a lifesaver for us, as it has for many other families. In the early days, it was particularly hard for me seeing other parents taking home their babies, especially while we’d be spending hours upon hours by Jacob’s side. Not only did he need an operation to put his spinal cord back into the spinal canal, he had developed hydrocephalus. Fluid had built up on his brain, causing too much pressure and he needed a shunt fitted to divert the fluid. By having a room in Eckersley House we realised we were not the only ones unable to take our child home, we were surrounded by other families in similar situations. We no longer felt so alone.

If it wasn’t for The Sick Children’s Trust we would’ve had to pay for a hotel room nearby. But even that would’ve felt like a long way from Jacob’s side. At Eckersley House we were never more than a few minutes away – no matter what time of day or night we could be with our son in an instant. I remember once in the middle of the night saying to Nathan that I just wanted to see Jacob and as quick as a flash I was there by his hospital side. To have that access to your child in hospital is so important and something every parent with a seriously ill child should have.

We’ve been supported by The Sick Children’s Trust on two occasions. The last time was in October when Jacob had to go in for an operation. It was very different this time as Jacob was older and a bit more active – he just wanted to play! Eckerlsey House was great as we could take him over to the playroom and finish off the afternoon with a family meal in the kitchen before taking him back to his hospital bed and kissing him goodnight.

We would love to repay The Sick Children’s Trust for its support. Not only has it been a ‘Home from Home’ for me and Nathan, it’s became one to our wider family. On the wards, you can only have two visitors at a time so we would often take Jacob’s grandparents over to Eckersley House. We could do the things that we would’ve been doing had we been in our own home, like sitting down for a cup of tea and having a chat.

Our family, and friends, have been so amazed with the support we’ve received from The Sick Children’s Trust that they’re raising money for the charity. One of our closest friends ran the Leeds Marathon to raise money for Eckersley House and Jacob’s Nana has asked for donations to be made, rather than receiving birthday presents. We’re touched by their generosity as we know the difference it will make to other families.

Jacob is 19 months old now and has had four major surgeries but he’s defied all the odds set against him. At times it really has been hard, but we feel so lucky with Jacob – he’s doing so well. He’s crawling and really trying to walk now which is more than anyone ever expected of him. It’s a world away from what we were being prepared for. He’s a cheeky little monkey – but he’s our monkey and we wouldn’t have it any other way.

Gabi Matthews, Jacob’s Mum

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