Our James's Story
My husband and I had James in 2015, a perfect bundle of joy that completed us. We had wanted a child for so long but due to my poor health, we had to wait a while, just until my Kidneys were able to cope with the pregnancy pressure.
James was born after a very easy labour weighing 6lbs, he was a little darling. He hit every milestone in those first 5 months, he was holding his head up, rolling over and making beautiful sounds to name just a few. Everything was perfect until it wasn't.
It was in May that we noticed James was unsettled, upset and in some sort of pain. He then developed a temperature. We got him an appointment to be seen out of hours in A&E, we were told it was 'just a viral infection and sent home. It was then that I noticed odd movements and twitching at the side of James' mouth. The ambulance was with us in minutes, we were rushed back through A&E and then told it was very likely to be Meningitis. Something I've read about but never thought much about.
At that moment it felt like the world stopped. I remember falling to my knees, hardly able to breathe through the tears, worry and dread. Our baby was so poorly.
In the next few days, James had so many seizures, his temperature at one point was 40.1°C, he was in children's ICU for several days. Doctors kept coming over to us and saying complicated words that we didn’t understand. Eventually, James was diagnosed with Meningitis and Encephalitis. We took James home after 3 weeks in hospital, thankful that he was recovering and well enough to come home. Our routine now consisted of ensuring James had various drugs throughout the day to help manage his condition of West Syndrome. A lasting effect to having Meningoencephalitis. Each time he had a seizure he would forget how to sit up, roll over and make those beautiful little noises. I remember him forgetting how to open his hand at one point. Unable to lift up his beloved Giraffe toy. We took him to many appointments at the hospital to see various people, including Physiotherapy and Occupational Therapy, they helped us to teach James the skills he lost. It was such a draining time, we were physically and emotionally exhausted. We no longer had time to go out and see friends as James care regime was so intense.
Late November of that same year James developed what we thought was a case of sickness and diarrhoea, worried about his epilepsy drugs not having the desired effect at this time we rushed James to A&E, eventually being told that he had developed Meningoencephalitis, AGAIN! But this time we knew what we faced and that made the words harder to hear. How could this be happening, again?! It's just not fair, it's not right. I remember thinking constantly as I watched James go back to Children’s ICU, be put onto the same lifesaving antibiotic drugs as before and then witness his tiny little body fight. Whilst we sat and prayed. All we could do.
His veins shut down at the end of the first week and the Drs decided to drill near to his knee cap to insert a cannula, whilst all this was happening he was in a 3-hour long seizure and I was a mess. Being unable to help James at this moment in time was the most difficult thing I had ever experienced, I couldn't stand, I couldn't breathe and I was terrified. The nurses took the decision to call in James dad who was at work, someone else needed to take over, I felt like such a failure in those moments.
Once James was stabilised and back in ICU, I noticed he wasn’t speaking or looking at me anymore so I raised the alarm. He was later diagnosed as being Severely Partially Sighted and Non-Verbal.
Meningoencephalitis caused our little baby to be diagnosed with West Syndrome, Non-Verbal and Severely Partially Sighted.
With West Syndrome, he was drug-resistant to Epilepsy meaning he has a number of uncontrollable seizures during the day and at night and a label of high-risk SUDEP (Sudden Unexpected Death in Epilepsy), he has severe Global Learning Delay and hypermobility which alongside his visual problems and epilepsy means he must wear a protective helmet to keep him safe, due to the number of falls he has. He has broken his nose many times and it is now miss shaped and swollen.
Fear followed us every day, I sat up watching him at night, just in case anything happened.
When James turned 2 his epilepsy got worse and after failing the Ketogenic Diet James was diagnosed as having Lennox Gastaut Syndrome, his epilepsy was awful. He had around 20 seizures a day and many at night too. We were all exhausted. After giving up work after his second diagnosis of Meningoencephalitis I became James main carer, I took him to many appointments, classes and groups to try and help with his global development. He even had a VNS (Vagual Nerve Stimulation) device fitted at Birmingham children’s hospital to try and help reduce seizure activity as the drugs failed and brain surgery wasn’t an option due to the severity of the brain-damaged James suffered.
My health deteriorated too, the stress of caring for James and understanding his condition impacted my kidney health. Trying to look after myself and James at the same time was challenging, especially whilst hearing all these terms from the hospital about James and his risks of SUDEP. I couldn't sleep through fear of not being there to help James. I couldn't go out through the fear of James having a seizure and needing me. Fear took over our lives. We lost our friends; family members didn’t understand our situation and the need to protect James and got frustrated with us. Being the parents of a disabled child is very lonely, other people do not seem to understand the stress and added pressures to keeping your child safe and happy above anything else.
Recently, during the Covid Pandemic James health has deteriorated further, he has these unknown episodes which are increasing in frequency and length. They can happen at any time and anywhere and are terrifying for us as parents to witness and for James to experience. This has added even more stress to our lives and results in many A&E admissions due to James not breathing or being responsive for a number of minutes.
It was early 2019 when we were introduced to Zoe's Place through James Nursery. At first, we didn’t know what to expect, but James and I were invited to look at the place whilst Dad was at work. As soon as I walked through the doors I fell in love with the place. It was perfect. A colourful and loving environment with staff on hand to speak to and reassure us. James loved it, he was so happy and excited, he loved the 1:1 experience he was offered and even made a new friend! I remember happy crying because I was so overwhelmed by the love and support being offered to us. We didn’t have to fight alone anymore! They have a sensory room which James could freely visit, soft room which was perfect for James to safely explore alone, without me standing closely by his side like I normally do, ready to catch him when he falls or has a seizure. I couldn't believe we had found this wonderful place and was so thankful that we were accepted into this wonderful family environment. Finally, James was being accepted and with like-minded people. I could see that James would fit in well here at Zoe's Place and he would be surrounded by a happy and loving team of nurses. I felt relief and reassured that my little boy will be well looked after here, I immediately trusted them and most importantly so did James.
Zoë’s place is so great because it's a home from home environment where James is surrounded by love and happiness and I can go home and relax whilst knowing James is safe, happy and looked after. Something that we've missed out on due to his health needs and lack of understanding and resources from family members, it isn’t safe for James to be left with anyone that isn't epilepsy aware.
Taking James to Zoë’s Place for a sleepover allows me and my husband time together to do simple takes such as shopping or garden maintenance, an opportunity to catch up on sleep and housework. I'm able to phone Zoe's Place for advice and support at any time and I always feel reassured at their response. I've met other mums who I can speak to and share concerns and experiences with also, which I wouldn't have been able to do without Zoë’s Place and the groups they provide.
I feel like a human again, less tired and alone because I have the support from Zoë’s Place. I rely on the staff a lot and see them as friends, they've watched James grow and develop and have given me advice and support which I have found very useful. For example, they have recommended various toys which he enjoys playing with whilst having his respite, particularly a switch car.
If you're able to support Zoë’s Place, please do. They are a wonderful charity that offers support to babies and their families. Parents are often in need of desperate respite and Zoë’s Place is their only support network, the only source of help. Zoë’s Place is a charity and therefore relies heavily on donations to keep their doors open, in order to continue to support families and offer a bit of normality for the babies and their families. I don't know what we will do without the support from our much-loved respite centre. Zoë’s Place. The Covid pandemic has really affected the way in which Zoë’s Place run, due to a huge financial loss because charity events have had to be cancelled. So, they really need support from the public in order to continue to support families like ours, especially during the pandemic. Families need more support now.
They have completely changed our lives over the last few years and we are forever grateful.