In Our Hearts Stories
Less than 20% of those diagnosed with a brain tumour survive beyond five years
“To lose a child is the worst possible thing and I wouldn’t wish it on anyone. We talk about Jacob every day, Jessica says good morning and goodnight to him and chats about him as she rides her bike, imagining he would be doing the same thing. We knew nothing about brain tumours before this happened. Now they are a part of our lives. It doesn’t make sense to think that brain tumours kill more children and adults under 40 than any other cancer yet just 1% of the national spend on cancer research is allocated to this devastating disease. Jacob had his whole life ahead of him. If anything good is to come out of this it will be that more money will be invested in research.”
Jacob’s mother Julie Donoghue tells his story …
Jacob was born on 29th November 2014 and when we brought him home from hospital we felt as if our family was complete. He quickly put on weight and was happy and healthy. He grew chubby as the first weeks went by and was very smiley, particularly when our daughter Jessica entertained us all with her dancing and little shows.
Jessica had been born in August 2012. We went through IVF as I had had an ovary removed followed by a complication with cysts which meant Andy and I were unable to conceive naturally. When I discovered I was pregnant again we were surprised but delighted. The pregnancy went well although I had to be induced and there were a few complications following which Jacob had a respiratory infection diagnosed as bronchiolitis when he was three weeks old. Despite this, Jacob continued to feed well and was alert. He was holding his head up and cooing and doing everything he should be at that stage. He passed his eight week check-up with flying colours. No-one could have known that, within days, our world would be turned upside down.
On 3rd March I noticed he seemed to be sleepier and he was finding it harder to breathe at night. We took him to the hospital where we were assured he was fighting off a bad infection but all was well. He was discharged and we took him home that evening. His breathing became worse than ever and his chest was dipping as if he was really struggling to get any air into his lungs. It was nothing like before. I didn’t want Jessica to see what was happening so I put her to bed. We phoned for an ambulance and, while we waited, Jacob stopped breathing. I just froze and didn’t know what to do. Andy performed CPR and brought Jacob back. Help arrived within minutes and Jacob was rushed to hospital and taken straight to the resuscitation room while we had to wait in a family room. He started to come round and I was allowed to sit on the bed and hold him.
Jacob was taken to a high dependency ward and we sat with him. In the early hours of the following morning his condition deteriorated and it was then the doctors told us they thought it was something other than the bronchiolitis infection.
It was 8am in the morning when he went for a CT scan and we were told the devastating news that Jacob had a brain tumour. At that stage, they didn’t know what type it was but we were told it was quite big and Jacob needed emergency surgery. We were told very clearly that Jacob was extremely ill and that he might not make the journey by special ambulance to Leeds General Infirmary. Only one of us was allowed to travel with him and, whichever one of us it was would have to be very strong. We decided it should be Andy and I went by car with my mum.
I can only recall being in total shock. Things had happened so quickly and our beautiful baby was so, so poorly. We had a meeting with the doctors and our dedicated nurse and it became clear we were likely to be at the hospital for the foreseeable future, possibly as long as a year. Jacob would need numerous operations and we were taken to see a house where we would stay in what were expected to be the long and difficult weeks and months ahead.
The doctors broke the news that it was inevitable Jacob would be left with some degree of brain damage and, after three hours in surgery, we were told he had come through the operation but was not expected to live.
An hour later we were called back to be given the worst possible news. Jacob was dying. We were allowed to spend his last half an hour together. We took it in turns to hold him and kiss him. The machines which were keeping him alive were switched off. I was just horrified and threw up everywhere. Things had happened so quickly. Although I know there is nothing that anyone could have done to save him, I was angry that we had been to the hospital so many times and yet no-one knew about the brain tumour.
Jacob’s tumour was a grade four glioblastoma multiforme (GBM) which covered almost all of the right side of his brain. We can’t help but think about what a bright child he would have been. He had been able to function and develop so well although half of his brain was so badly affected. We were in shock for a long, long time. As the fog of losing him starts to lift we are left with the reality that he is not here with us. If anything, things get harder.
Jessica adored her baby brother. Jacob died on 5th March 2015, he was just three months old. The following day, we told Jessica that he had gone. He was an angel in the sky and wasn’t going to live with us anymore. To lose a child is the worst possible thing and I wouldn’t wish it on anyone. We talk about Jacob every day, Jessica says good morning and goodnight to him and chats about him as she rides her bike, imagining he would be doing the same thing.
We told her that Jacob was very poorly, that he fought well but the doctors couldn’t fix him. We will never let her forget that she had a special brother.
We knew nothing about brain tumours before this happened. Now they are a part of our lives. It doesn’t make sense to think that brain tumours kill more children and adults under 40 than any other cancer yet just 1% of the national spend on cancer research is allocated to this devastating disease.
Jacob had his whole life ahead of him. We had planned his future, talked about childcare, which school he would attend and then our dreams were shattered.
If anything good is to come out of this it will be that more money will be invested in research to prevent this from happening to other babies, children, sisters, brothers, parents, friends.