All of a sudden we were being told the worst news a parent can hear

When my four year old son Harvey woke up in the middle of the night sleep-talking, my husband, Garath and I just thought he was dreaming and maybe overtired, we never considered that it could be a sign of something more serious.

However, in just a few days we began to notice changes in Harvey’s behaviour. We were told by his nursery teacher that he had wet himself at nursery which was so unlike him and over the next two nights he continued to wake up in a trance, saying random things. He seemed to be very spaced out and we noticed that his pupils were enlarged. It was really weird but we thought he was half asleep and dreaming. By the third day he began to vomit and his trance like states were happening more often. It came to a point when we were talking to him and it was like he wasn’t even there; his pupils were huge and he was drooling. We knew that something was seriously wrong so we rushed him to our local A&E at Grimsby Hospital. Garath and I were terrified as we didn’t know what was happening to our little boy.

Harvey had several tests and scans before we were given the heart-breaking news that he was suffering from seizures due to a lesion on his brain. We were so confused; to us a seizure meant someone having a physical fit, we didn’t realise that a seizure could also be the vacant episodes Harvey was experiencing. We were told that the lesion could be due to an infection or a cluster of blood vessels known as Arteriovenous Malformation. But as both options were extremely unlikely, we were told to prepare for the worst case scenario; that our little Harvey had a brain tumour. I was hysterical – I just didn’t know what to do. A couple of days earlier my little boy was fit and healthy and all of a sudden he was lying in a hospital bed and we were being told the worst news a parent can hear.

That night Harvey experienced several seizures and it was decided that he should be transferred to Sheffield Children’s Hospital for specialist treatment. We have another son, Blake, who was just two years old at the time but fortunately we were able to leave him with family as we didn’t want him to see his big brother poorly in hospital.

Harvey was admitted and scheduled in for an operation. Sheffield is over 70 miles away from our home in Grimsby so returning home just wasn’t an option, we couldn’t bear to leave Harvey so frightened and alone in hospital which is why it was such a relief to meet Ann, House Manager of The Sick Children’s Trust’s Treetop House. She came to the ward to offer us a room and showed us to the house which was just a lift ride away from Harvey’s bedside. It was wonderful and gave us peace of mind straight away to know that we didn’t have to leave our little boy.

Harvey’s operation was scheduled in for a week’s time so we were able to spend some time with him before. Our family came to visit with Blake and Harvey was able to come to the house with us so it was great to be able to spend some time as a family. Treetop House was everything we could have hoped for; it had a real homely atmosphere and had all the facilities we could possibly need. Garath and I had a lovely bedroom, there was a well-equipped kitchen for us to cook home-made meals, a cosy lounge with DVD’s for Harvey and Blake to watch and a playroom full of toys to keep them occupied. Having Treetop House really helped Harvey take his mind off his operation and also helped to keep him positive. There were many poorly children on his ward which was difficult for us all to see and especially for Harvey.

Garath and I were in a constant state of worry and although we had to trust the consultant’s opinion, it was so difficult to know if we were doing the right thing. We signed a consent form before Harvey’s surgery, not knowing if we would ever see him again and then faced the most anxious wait, for what felt like the longest five hours ever.

Nothing could take our minds off Harvey but having Treetop House offered us a distraction from the constant noise and distress on the hospital wards. Even just to go back to the house to sit and have a coffee helped because it gave us a sense of normality. Being able to stay in the house meant we could always be together and offer each other support. We could stay with Harvey all day and go to bed with the peace of mind that if anything happened we would get a call from the ward directly to our room. 

When Harvey came out of surgery we were told that it may take him days to come round, but after just a few hours he woke up and we have never been so happy to hear him demanding to play his favourite game; ‘Angry Birds.’

Thankfully, after a few days in intensive care Harvey was able to come home. We had to return to hospital a week later as his head started to swell and he needed a lumber puncture but he was only kept in for a couple of nights. Once again Treetop House was there for us and it felt so familiar that it actually began to feel like our second home!

It was during this second visit to hospital that we were told that Harvey did in fact have the rare condition, Arteriovenous Malformation (AVM) which is an abnormal cluster of blood vessels in the brain. They have called Harvey a little miracle as it is so uncommon to catch the condition before it causes a stroke or brain hemorrhage.

We feel extremely lucky to have our Harvey back, he is still on medication but we are hoping that at his next appointment he will be able to come off it completely. Harvey has made fantastic progress in such a short period of time; more than we could have ever imagined.  We are thrilled to say he is now back to his old self and it is lovely to watch him and Blake playing together.

What happened to Harvey presented us with the most difficult time in our lives and as bad as it was, it truly was a blessing in disguise because if his condition hadn’t been found, it doesn’t bear thinking about what could have happened.

Karley Holder, Harvey’s Mum