James was a healthy happy 6 month old. In March 2015 he was hospitalised with Viral Meningitis. An MRI on April 1st showed severe brain damage due to a rare  form of Viral meningitis (HSV1) Encephalitis.

James parents are Sinead Peters (from Cahir, Co. Tipperary, Ireland) and Mike Grady (Salford, UK), a nurse and a teacher and they live in Manchester with James and his older brother Darragh.

James Story

Our son James was a happy and healthy 6 month old—always smiling and with the cutest laugh. His little personality was just emerging—a delight to us and his big brother Darragh (then 2 1/2 yrs). He was the easy-going laid-back type – a dream baby – who seemed content to listen to his Dad strumming away on his guitar even when the rest of us were shouting ‘give it a rest’. On the morning of March 6th 2015 James vomited but slept most of the morning and appeared in good form. I met a friend for lunch with her baby and out of nowhere James vomited again but projectile this time. I took him home where he quickly developed a fever and started to become irritable. I gave him some paracetamol and ibuprofen but after a sleep he still seemed no better. As soon as Mike came home we took him to see the Out of Hours (OOH) GP who told us it was probably something viral and sent us home. She wasn’t worried so why should we - we felt reassured by the doctor and didn’t suspect anything sinister – we’ve been here before we thought as Darragh had had many a virus so we weren’t overly concerned and we expected to see some improvement by the next day. He was still breastfeeding and having some albeit less wet nappies but his fever although never above 39c didn’t seem to break. By the next day it became apparent something was very wrong we took him back to the OOH where we saw a different GP. While in the consultation room James condition suddenly deteriorated he started to become very, very irritable with a high pitch cry and started to arch his back and nothing we could do would pacify him. I tried to breastfeed him to settle him but he refused - and vomited again. The GP called an ambulance and while in the ambulance James appeared to settle which I was grateful for then became quiet and listless and started to stare off into space. I didn’t realise at the time but he was having a seizure. At the hospital door the emergency staff were waiting for us and quickly took him off me. He started to have another seizure and they told me he was in sepsis and in shock. The room was flooded with people working on him and as they ushered me out of the room they told us his condition was critical. It was surreal. I didn’t quite believe what was happening and I think I was in shock myself. And throughout all of this I never once thought Meningitis or even considered the heartache and misery which awaited us.  James was quickly treated with strong antibiotics and antivirals as they suspected Meningitis – it wasn’t until a few days later that his lumbar puncture results came back and he was diagnosed with a rare and aggressive form of Viral Meningitis (HSV1) encephalitis.

 James appeared to respond well to treatment. We were told he would need to stay in hospital for 3weeks to receive antiviral IVs (intravenous therapy). He would get very irritable and cry incessantly and he hardly slept. It was difficult to watch him as he must have had horrendous headaches and been in a lot of pain. We were up all day and all night with him and we were exhausted. But he seemed to improve day by day and the doctors were all so happy with his progress. He started smiling at us after a few days and playing with his toys again and we were so relieved he seemed like the same old James. I would walk the wards with him chatting to the other mums, doctors and nurses with James flirting away with them all loving all the fuss and attention.  We were grateful James had survived and was doing so well and I thought we were one of the lucky ones and that this was a difficult chapter that we would soon put behind us and that James would probably not remember. Little did we realise that the nightmare was just beginning and how our world would change forever. The day before discharge his condition deteriorated dramatically. He became extremely upset, crying and howling and at times seemed psychotic like a crazed animal. The staff initially dismissed him as having colic, teething, being over-tired or as having a stomach virus.  They seemed to forget that the reason he was here was neurological - because of his meningitis – they seemed to look for other explanations for his irritability. It was extremely distressing – never had we seen him quiet so bad. We spent the weekend asking for help but no one listened. He would cry until eventually he would pass out. I really wanted to believe there was some other explanation but I had what I can only describe as a sickening, sinking feeling that something was very wrong. We were desperate for answers. On April the 1st an M.R.I confirmed our worst fears, it showed James had extensive brain damage—we were heartbroken and devastated on learning this news.  Almost simultaneously and over the course of a few days James lost all his skills. He went from a happy, playful baby to a baby I hardly recognised and who didn’t appear to recognise me. This was only the start of a very painful journey for us as a family and James remained in hospital for four months.

As you can imagine our world was torn apart as we watched him develop complications as a result of his brain injury. James suddenly appeared to lose the ability to breastfeed – to latch on and suckle – it was clear he wanted to (he was hungry) but he’d forgot how or at least he wasn’t able to and I couldn’t help him. I would cry and cry as I held him and it broke my heart to watch him. It was all so confusing. His appearance started to change – by that I mean the look in his eyes was different – he had a far-away gaze – he seemed to look through us. He looked lost and so were we. He lost everything - his head control, the ability to swallow and feed, to laugh and to see and recognise people (including ourselves) and objects around him. He was unable to sit up or indeed be held. Around this time he developed an autoimmune anti-NMDA movement disorder which left him with involuntary movements and he would thrash and kick continuously which meant he was difficult almost impossible to hold sometimes and these movements would even wake him from his sleep. As a result he suffered endless bouts of irritability and sleeplessness. His brain agitation and endless respiratory and gut problems (excess oral secretions, wind and constipation) would see him moaning and writhing about for hours and we just prayed -desperate for him to sleep – at least then he could rest. This went on for weeks and I wondered how much we or he could take – to see your child suffer is something no parent should ever witness. The whole experience left Mike and I feeling helpless as well as physically and emotionally exhausted - feeling ‘punch drunk’ and with no prospect or hope of any good news for James. We felt cheated - that we’d been robbed of our beautiful baby boy and our hopes and dreams for him, and for Darragh the little brother James he should have known. This is what I as a mother find most painful. We will always wonder what may have been for James and I will always see little boys/siblings playing together when we visit the park and wonder how things might have been. James is now severely disabled—visually impaired and we are not sure of the extent of his hearing ability.  We don’t know if he will ever talk or be able to communicate with us in the conventional sense or if he will ever walk. The future is full of unknowns and it is scary sometimes – all we do know is that we LOVE him – that he is an amazing, inspiring little boy that fills our hearts with absolute joy and that we are so proud of him and that despite all he has suffered he still can manage a smile.

We are home from hospital now. A few weeks ago he started to smile again and more recently has started to laugh and we’ve been overjoyed by this – to see glimpses of the old James come back to us. We are seeing small improvements in him thanks to a new treatment for the movement disorder which appears to be working but his recovery from his brain injury is a long one and he has a long journey ahead. We hope he surprises us and exceeds everyone’s expectations. He is still developing and we are full of hope. All our family, friends and neighbours have been amazingly supportive throughout this time—the acts of kindness that we have witnessed have been truly beautiful and donations made for James have been so generous. We thank them with all our hearts for that. We are looking to fundraise to fund James’ rehabilitation—to provide James with the right people and treatment to facilitate this. We want him to have as normal an upbringing as possible and to be the best he can be. This is our dream for James.

Sinead
(James' Mum)