Imagine being told that every second with your child could be your last...

Imagine being told that every second with your child could be your last and realising that you couldn’t stay with them at a time when they need you most. It is an impossible thought but it is one that my husband Bob and I had to think of when we were told that our darling Jacob Bear might not make it through the night. Thankfully we could be by Jacob’s side because of the ‘Home from Home’ accommodation provided by The Sick Children’s Trust. Our story began on the 6th December 2010 when our baby boy Jacob was born by Caesarean at Addenbrooke’s Hospital in Cambridge, our local hospital. We were so excited and just completely overwhelmed with love for him, we couldn’t wait to take him home and although he stayed in hospital for a week following his birth to help with his feeding, soon we were all home together as a family. When Jacob was six weeks old, his doctors became worried that he wasn’t smiling yet. They found that Jacob had no red reflex in his left eye and we were told to see a consultant who diagnosed Jacob with Unilateral Cataract and he was scheduled in for treatment in March 2011. We were really worried, but we were grateful he had been diagnosed and booked in for treatment. However, while we were waiting for this operation, Jacob was also diagnosed with mild hearing loss in both ears. I immediately thought that Jacob’s eyesight and hearing must be connected, but the doctors didn’t think there was any connection. However, only two weeks later Jacob’s feeding began to deteriorate. He would refuse one or two feeds daily and we noticed that he was really sleepy and could only stay awake for a few hours at a time. We knew this wasn’t normal especially as when I took him to a postnatal group the difference between him and the other children was clear. The other children would all be lying on the floor kicking and playing and Jacob wasn’t. I became really anxious about Jacob’s condition and took him to the doctors multiple times over the next few months. But they just seemed to repeat that all babies start to do things at different times and it was nothing to worry about. Jacob was not sitting, rolling over or holding things like his friends. Jacob was finally referred to the Early Intervention Team in July 2011 and we made appointments with the paediatrician and a physiotherapist. We felt so much better knowing that we were going to receive support and specialists were going to help Jacob with his movements, we even noticed that he was beginning to smile more and sit up in his high chair; he seemed to be so much more alert. Just when we felt like things were improving for Jacob and everything was going to be okay, in early September he began to become really withdrawn. He became really tired again all the time and wasn’t eating as much as he had been. I took him to the doctors again but they told me he was probably just at the beginning of a cold or virus and it would pass. I just knew this wasn’t right, I knew Jacob and I knew then that it was more serious than a cold. In the days that followed Jacob started to bring his legs up to his belly and it looked like he was really straining himself. He then one day had what we thought was a seizure. We took him to the GP and were told to come back if it happened again. It did and we rushed him straight to A&E, he was admitted straight away that night as he was having multiple seizures. It was horrible to see him struggling so much, knowing there was nothing we could do; we felt so helpless. The doctors took an Electroencephalography scan which is the recording of electrical activity along the scalp, which showed that he had chaotic brain activity and they immediately started treating him for epilepsy. They carried out other tests as well, but they all came back normal. The doctors felt that Jacob’s developmental delay and seizures could be connected so they referred him to the genetic team before sending us home just over a week later with no concrete diagnosis. We were really frustrated and scared, at this point Jacob was seizing up to 16 times a day for up to 20 minutes at a time. We were terrified; we tried multiple medication types and even high dose steroids. These did work for a little bit and brought our happy little boy back to us. He smiled and tried to communicate with us but as soon as the dose was reduced, his condition deteriorated again. We were so upset, doctors were unable to diagnose Jacob and couldn’t explain his seizures and we certainly had no idea what was happening; we were devastated. All Jacob’s genetic tests came back negative although his seizures began to lengthen and at times they began to last over 20 minutes at a time. The doctors told us that they suspected he may have Mitochondrial Disease which is a terminal illness. We tried to remain as positive as we could; we had to for Jacob’s sake but as well for ourselves. If we were going to help Jacob through this, we had to remain strong. Jacob was only one year old, it was impossible to think that we were going to lose him so soon. Besides, all tests were coming back negative so nothing was confirmed yet; we refused to believe what we were being told and wouldn’t give up. Jacob had a repeat MRI scan, a lumbar puncture and biopsies of his skin and muscles in the February of 2012. We were called in to see the doctor. They showed us his scan and pointed out that his brain stem was largely fluid and showed us the large lesions of dead brain tissue, they then mentioned Leigh’s disease and Alpher’s disease, they said they were unable to confirm which disease it was until further tests came back, but that we should expect the worst and we had very little time left with him. We were heartbroken. The thought of Jacob leaving us and the world at only one year old was devastating. We loved him so much and he was everything to us, the thought of carrying out our lives without him was just unthinkable. We were experiencing our worst nightmare and there was absolutely nothing we could do to help him. We took Jacob home with us and tried to carry on as normal as best as we could. A few weeks later Jacob woke up with a temperature and he was resisting taking his medication. We rushed him straight to A&E and he was diagnosed with a chest infection. Only three days later, late one night, he stopped breathing and we were told he was being moved to the Paediatric Intensive Care Unit (PICU). We were told that he may not make it through the night and we should start to say our goodbyes. We spent the whole night with Jacob and he did make it through. But the following day we were told by his doctors they felt sure he had Leigh's Disease which is a Mitochondrial Disease and there was a high chance that Jacob would not be coming home with us again. We wanted to spend as much time as we could with our Jacob, so we didn’t even think about going home. We live 25 miles away in Sutton, near Ely, which is over an hour’s drive away, and the thought of being this far away from him in such a vulnerable condition was just unimaginable, but we were unable to stay on the ward either. It was when we were facing this situation that we were offered a room in The Sick Children’s Trust’s Acorn House. I cannot begin to explain the weight that was lifted off our shoulders. It really was a ‘Home from Home’ and what was fantastic is it was free to stay and there was no paperwork to go through. A nurse on Jacob’s ward simply handed me the keys at about 4 o’clock in the morning and the room was ours. Bob and I were exhausted so it was amazing to just be able to go back to a safe place and rest. The house itself was brilliant; it was only around the corner from Jacob’s ward and it took less than five minutes to walk there. Our bedroom even had a phone line connected straight to the ward which was great if the nurses needed to contact us, but also because I could call through at any time. I remember waking up in the middle of the night sometimes and just phoning through to make sure everything was ok. We began to prepare for the worst and family and friends came to visit Jacob on the ward to say goodbye. We cried every day by his bed side. We even got Jacob christened in PICU, which was a really emotional service but lovely to do for him at the same time. Acorn House helped us in so many ways. With so many family members and friends coming to visit Jacob, it was so helpful to have the house that we could take them back to, for a cup of tea and a proper chat or just some much needed peace and quiet. It also gave Bob and I a sense of normality at a time when our world was turned upside down. We were able to cook a home-made meal and sit on the sofa while watching the TV. It also helped to have other families around us who knew what we were going through. They immediately understood and could sympathise with our situation. We are still in touch with some of the families we met in the house now and they have become good friends. Having our bedroom to go back to at night was really helpful to us too, especially knowing the upsetting news that Jacob didn’t have much time left. The ward was a constant hub of noise and chaos. Having the quietness of our bedroom ensured we had a place we could go to cry and let all our emotions out. We needed to grieve and come to terms with what we had been told and having our own space was essential to do this. I sat with Jacob every day and begged him to come back to us, to just open his eyes and come home. He couldn’t leave the world yet, we had so much we wanted to do with him, he had so much left to experience, he couldn’t leave us. Jacob listened to me and was able to come home after two weeks in PICU. Doctors asked us what we wanted them to do if the situation was to happen again and we made the heart wrenching decision for them not to intubate him. Bob took a couple of months off work and we made a list of things we wanted Jacob to do before he died, making his last few months as happy as possible for him. Sadly just over two weeks later at 11:30am on the 20th April 2012 our darling Jacob died peacefully in my arms with his Daddy holding his hand. We miss Jacob every day and there will always be a hole in our lives because he had to leave the world so soon. Jacob was with us for just 501 days but he changed the lives of Bob and I and hundreds of other people (over 200 came to his funeral). We will be forever grateful to The Sick Children’s Trust for enabling us to spend as much time as possible with our Jacob Bear. Without them, we would have faced sleepless nights on the hospital floor or in the car, as there was no way we were going to leave his side and go home. Claire, Jacob’s Mum.