Raising awareness Our blog Toby's story Our son Toby was born a normal screaming, weeing-on-mummy 7lb boy (writes mum, Jemma). His birth was very quick and painful but all the pain goes away as soon as you have your little love in your arms. Shortly after birth, I noticed Toby was sleepy and not interested in feeding. We all just thought he was a tired baby after being forced out his home he set up camp in for the last 9 months :) However, the following morning it was niggling at me that Toby still was not taking much milk and was still drowsy. I raised my concerns to a midwife who attempted to feed him and did manage to get another 5ml in - although she said he did need to feed more, he was still allowed home. Now I know all babies are different and I thought after already having two to expect our first night to be up and down, but I didn’t plan for how exhausting it actually was. To put it bluntly, it was horrific. Toby did not want to sleep on his first night home, he didn’t want any milk and he didn’t want a cuddle. His dad and I were just looking at each other, not really knowing how to comfort him because nothing would stop his high pitch screaming. Toby was now two days old and the midwife came to do her first visit. I told her he was very unsettled all night, was still poor feeding and he had a horrible scream if I picked him up, like we were hurting him. She said he looked a little jaundice so sent him back up to the hospital for a check-up. Once there I explained once again that he didn’t like being handled or to feed but it seemed to fall on deaf ears. Toby’s jaundice level was below the treatment line, so we were sent home. That night it took me an hour to wake him for milk and he still only took about 5ml. My gut was telling me he wasn’t right - surely no baby is this drowsy? I phoned the maternity ward and told the midwife my concern and was told to keep persevering, so that’s what we did. Day three came and Toby had visitors again :) my mother in law could sense something was bothering both Toby and myself so urged me to phone for help again. I didn’t tell her that we had already called the 111 and had the paramedics round to see him, I guess by this point I was feeling stupid constantly saying something wasn’t right with my baby but people saying he was fine. The paramedics didn’t take Toby to hospital because his observations were fine, apart from his blood sugars which were at 2. We were told this was normal for a new borne, I challenged this thinking he might be dehydrated due to barely any intake of milk but I was just dismissed. By this point, I was driving myself insane thinking I was an over reactive mother and maybe it was all in my head. Day 4 came and it was our nephew’s birthday so trying to forget my worries and enjoy the day we went out to the Trafford Centre with the kids. But my worries weren’t hidden for long because once in his pram Toby screamed each and every time we went over a tiny bump, it was like he was in pain. He continued to cry so I took him out the pram and tried him with milk, he gulped down 3oz. I was so happy that he drank this much I was making a big song and dance about it. Once home I gave him his last bottle and again he drank another 3 ounces :) I began winding him and as usual he was arching his back crying like I was hurting him. I stopped and just held him in my arms looking at him. It was then that I realised something was seriously wrong with my baby, he started squirming and his eyes were flickering, this went on for about 10 seconds when all of a sudden his gaze fixed on me and the left side of him started jerking, it looked like he was punching himself in the face his arm just would not stop it. After this episode stopped, I ran upstairs with him and told his dad that I think Toby had a seizure. He looked at me a bit confused, but that all too familiar painful cry came back and the squirming and eye twitching and he had another seizure which lasted just short of two minutes. We felt sick with worry but for some reason I remained very calm. I told Josh (Toby’s dad) not to phone an ambulance as I didn’t think they would take me seriously, not to phone a family member to look after the boys so we could drive down, just phone me a taxi because I don’t want any fuss. I just thought people would think I was being daft. Upon arrival at the hospital I took Toby to the reception and explained what had happened, he was rushed through to the children’s department where a little bed was made up for him. The consultant came to see me and had to ask some questions so I explained to her the exact same thing I had been saying since day one, that he didn’t feed well, he didn’t like to be handled and he was a very drowsy baby. The consultant asked if Toby could have been dropped or banged his head, obviously I was outraged but I knew she had to ask these questions. The answer to both was no. The next was past history, I mentioned I had something called Group B Strep in a previous pregnancy but wasn’t tested in this one for it, the doctors face then said it all to me, I thought that’s it… he has strep B. I asked if he was going to be ok and she gave me the most serious look anyone has ever gave me and said that Toby was a very poorly baby, and that it would be best if I had some support with me. I knew what she was insinuating but I didn’t want to believe that my son’s life was hanging by a thread. I eventually stopped being stubborn and called his dad, as soon as I heard his voice I broke down, something I had not done the four days I had been trying to get someone to listen to me when I was saying our baby was poorly. The next few hours seemed like a lifetime. Our tiny new-born had wires all over him, bandaged hands and feet from cannulas. And was being loaded with antibiotics and anti-seizure medicine. We were glad he was now in the right hands but all I could think was that he might not be able to cope with any more seizures and that he is too small to cope with whatever it was that was taking over him. Over the next few days, Toby had all the necessary tests to rule out what doctors thought might be causing him to be poorly, meningitis came back negative as well as strep B and a range of others so I was thinking what the hell is this that’s made him so poorly. Six days later we got our answer. Toby had enterovirus encephalitis. We just looked at the doctor with a blank expression, we had never even heard of this. He then said 8 out of 10 people have never heard of it until someone is diagnosed with it. What he said next broke my heart, he said it was an infection on Toby’s brain and the surrounding fluid. He said the painful cries that he had been doing were probably Toby’s headache and that his seizures were a warning sign that an infection had now spread too far. It made me angry when he said it would have started off as an everyday virus but because nobody had picked up on it. It spread up his spinal fluid in to the brain. I just thought if someone listened to me the day he was born would we be where we are now. Toby made massive improvements and started to take milk and liked a cuddle finally :) And the day came we were finally allowed to take him home. HOW EXCITING. But then came all the information I was not prepared for. Toby is now under the care of paediatricians for development, he has had a hearing test but failed this so is to undergo another at 18 months. He is at risk of a lot of after-effects such as epilepsy, learning difficulties, speech and behaviour problems. We are so grateful that we have our son with us but the torture is still there because it’s the not knowing if he is going to be affected by the illness in anyway. Toby is our warrior. From day one he fought hard to beat his illness and he continues to amaze us, every little milestone is a big one for us no matter how small it is. Finding the Encephalitis Society has been a comfort because now I know there are other families who have been through the illness and cope with it every day. So we are not alone if ever I just want reassurance, even just from reading bits of information on encephalitis. The worrying thing is how unheard of it actually is, and that Toby’s illness went undetected for so long until diagnosis. If it wasn’t for parental instincts and amazing doctors Toby’s story might not have such a happy ending.