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.

We will always value the accommodation run by The Sick Children's Trust...

The Sick Children’s Trust were there for us when we needed them most and they made a really terrible time in our lives a lot easier to manage. My husband Lee and I stayed in Guilford Street House for four weeks in July 2012 when our son Matthew was taken in to Great Ormond Street Hospital. Matthew was only three weeks old when he developed a cough and after three days without improvement we decided to take him to our GP, who diagnosed him with pertussis, more commonly known as whooping cough. He said that we should take him straight to Accident and Emergency at Barnet Hospital, our local hospital which really worried us. We had heard of whooping cough before and knew it was serious but having to take him to hospital was especially frightening. Matthew was admitted into the children’s ward that day and over the next few days his condition deteriorated; he was really struggling to breathe and his doctors decided that to give his body a rest, they would put him on a ventilator. However, even on the ventilator Matthew’s condition didn’t improve and after a further assessment from doctors, we were told the only way to stabilise him would be for him to go on Extracorporeal Membrane Oxygenation (ECMO,) a machine that is operated outside the body that continuously pumps oxygen into the blood. There are only three hospitals that offer this treatment in the UK, so in order for Matthew to be put on this life saving machine he had to be transferred to Great Ormond Street Hospital (GOSH) in central London. We couldn’t believe what was happening, Matthew was still so tiny and to know that he needed life saving treatment was terrifying. Matthew was in such a vulnerable condition that he had to be transferred to GOSH by The Children’s Acute Transfer Service (CATS,) which is an ambulance service that specialises in transferring children in intensive care. It took them three hours to get Matthew ready to transfer and after the long journey to GOSH it took another three hours to stabilise him on an oscillator. I can safely say that this was one of the longest days of my life. At three weeks old, the last thing I imagined I would be doing with by baby boy was spending time in GOSH. Matthew’s condition seemed to become so serious so quickly and it seemed like it could change at any moment. Our home is in Finchley, North London which is an hour away from GOSH. There was no way we could contemplate going back home and leaving our little boy on his own, so with no accommodation on his ward for us, we spent the first night sleeping on the floor of one of the meeting rooms in the Neonatal Intensive Care Unit (NICU). It was awful and I remember us both thinking that we should prepare for the worst as Matthew’s condition wasn’t improving and he was surviving at that moment because of the ECMO. Matthew made it through that first night and we realised that to stay close to him, we would need to find accommodation close by. We couldn’t spend the foreseeable future sleeping on the floor of NICU but we were also not going to go home and leave him, so this was our only option. We went down to talk to the Parent Advice and Liason Services in the hospital and they told us that GOSH didn’t have any rooms left that we could stay in but that we may be able to stay in Guilford Street House, a ‘Home from Home’ run by The Sick Children’s Trust. They phoned Tina, the house manager who said that they could offer us a room. I can’t begin to explain the relief that swept over us. The house was fantastic and it really became invaluable to us. Matthew was diagnosed at GOSH with pertussis and double pneumonia and spent over three weeks on the oscillator. We spent this whole time by his side and were only able to do this because we had Guilford Street House so close by. This was amazing as since the house was less than a five minute walk from his ward it meant we would never be too far away from our little boy. I just simply couldn’t face going home without him – I did go once during the three weeks and it was really upsetting. It didn’t feel right going home without him; seeing all the lovely gifts we had received from our family and friends for him just made me feel so much worse. There was no charge to stay in the house, which was great. Neither of us went to work when Matthew was in GOSH as we couldn’t deal with not being with him, so the free accommodation helped us to ensure we could keep up with the everyday payments at home. If we’d had to find alternative accommodation in London, it would have been really expensive and put an extra stress on us, which I really don’t think we could have coped with. We were also really lucky in that we didn’t even need to worry about our house as my mum was over from Australia and staying there with Lee’s mum who travelled from Wales. They both came to visit us at GOSH and it was really great to have Guilford Street House to take them back to. We could have a proper chat with them over a cup of coffee in a quiet environment away from the hospital. After three weeks in GOSH Matthew was taken off the oscillator and we were thrilled. Although he still needed a ventilator, this was a big improvement and we could finally say that he was one step closer to recovery and to coming home with us. It is such an emotional time seeing your child poorly in hospital, and between this and all the chaos and noise on the wards it was easy for the hospital environment to become too much. We had to wear masks whenever we were in Matthew’s room because pertussis is contagious. We found it hard to spend more than a few hours at a time in his room because of this, so we would often take it in turns to go back to the house and catch up on sleep during the day. It was great to be able to do this as it was essential for us both to rest in order to stay strong for Matthew but also, as we took it in turns it meant he was never on his own. There was also a phone in our room that was connected directly to Matthew’s bedside, so if there was ever any change in his condition, the nurses could notify us straight away. They did kindly call us on the phone once during the night to let us know that they had to re-ventilate Matthew, so that we wouldn’t be shocked when we saw him. The house had all the facilities you could possibly need; a clean bedroom, bathroom, kitchen and lounge area. It was great as it really made us feel at home and normal again but at the same time we were very aware that things were not normal in our lives. One thing we will never forget about the house is the emotional support we received. There were many families in the house, all going through similar situations to us and it was nice to talk to them when we got back from long days at the hospital. Tina was a wonderful support to us; she always had a smile for us and would always ask after Matthew. The support she gave us, even if it was just a chat over a cup of tea, made a lot of difference. After nearly five weeks in GOSH Matthew started breathing on his own and has recovered well. He still has very damaged lungs, but he is growing into a strong little boy and he is at home where he belongs. Since the outbreak of pertussis in the UK in 2012, women are now offered immunisation in the last few months of pregnancy to give their child immunity from the condition. As much as I wish this had been the case when I was pregnant with Matthew, I am so pleased that hopefully fewer families will have to go through what we have in the future. Since coming out of hospital Matthew has been ill with many different viruses and illnesses but he is here with us which is the most important thing. He is still under a respiratory consultant at GOSH with whom we still have regular appointments, and each time we visit we try and pop in to see Tina too. We will always value the accommodation run by The Sick Children’s Trust and we will never forget the help they gave us. Michelle Williams, Matthew’s Mum