The Eve Hughes Memorial Fund

Our goal is to raise £30,000 to honour the memory of our daughter, Eve Elizabeth Hughes, who sadly passed away after spending her four months of life in hospital. We will divide this amount equally between Ronald McDonald House, Glasgow - where a £10,000 donation will earn a permanent plaque on their "donation tree" wall in Eve's name, and the Neonatal Intensive Care Units at both The Royal Hospital For Children, Glasgow, and Ninewells Hospital, Dundee. Here is Eve's story, with some information about the extremely vital services your donation will go towards: Eve was born at 10:21 on the 17th of December 2016 at Ninewells hospital, with a unique chromosome 18 disorder, which caused complex respiratory (breathing) problems, congenital heart defects, limb and bone abnormalities, cleft palate, and other significant medical problems. None of Eve's issues had been picked up on any antenatal ultrasound scans. We were terrified to hear as a provisional list of her many issues was rattled off to us by one of the doctors on the day she was born. She'd arrived six weeks earlier than expected, so we were already completely shocked. "How could this have happened to two healthy 27 year-olds, with no family histories of such problems?" Regardless, as soon as we laid our eyes on Eve, we loved her more than anything else in the world.  The days after Eve was born were filled with uncertainty. We wouldn't have a diagnosis of her chromosome disorder for another few weeks; she was struggling with her breathing, and the doctors were concerned about her still-undiagnosed heart problem. On the 20th of December, Eve was sent to the Neonatal Unit at the Royal Hospital for Children, Glasgow - who have a specialist Paediatric Cardiology department - so that she could have a detailed Echo (heart scan).  Whilst Eve was staying in the hospital, we were checked into the hospital's free accommodation "home-from-home", Ronald McDonald House, on the hospital campus, for as long as was required. This was vital for us, as it would have been impossible for us to afford a hotel over such a long period. The house keeps families close to their sick child, and is such an incredible service for parents and children alike. In Glasgow, Eve was found to have several heart defects, which Doctors would continue to monitor for changes over the next few months.  Eve was sent back to Dundee for monitoring on the 5th of January, as it appeared she would start to grow out of some of her problems - we would just have to wait. During this time, we stayed with family in Fife. We were warned that at some point, when she'd grown, we would have to return to Glasgow to address some of Eve's other issues.  Eve was a fighter; she endured regular painful blood tests, and physiotherapy to help her knees, hips, feet and hands - things that no innocent baby should have to go through. We persisted because everyone involved believed there would be a life for her worth living at the end of this journey, even if it did take months. Just ten days after returning to Dundee, Eve's breathing was so poor that she had to be sent back to Glasgow. Once again, we found ourselves living in Ronald McDonald House. Eve was asleep almost all of the time, as she was constantly exhausted from having to breathe so fast - often considerably more than twice as fast as would be expected for a child her age. She couldn't carry on this way, and so had to undergo a tracheostomy at the end of January. After the surgery, we were told she'd more than likely be ventilator-dependent for a while. She was put onto a ventilator, with the intention of weaning her off it over the following days and weeks. Eve would never be weaned off the ventilator. In addition, she started having frequent distressing episodes, which resulted in her airway collapsing, to a point where even the ventilator wouldn't help her - she'd need hand-ventilated ("bagged"). To prevent these episodes, she needed to be on continuous background sedation. Improvements in her condition were slow, but during February and March, she had a number of good days, when she was alert and relaxed. We were able to get her out for cuddles, which she really enjoyed - not only could you see her relax, but you could see her blood oxygen saturation increase on her monitoring system. Cuddling Eve was the greatest feeling we've ever known. Eve's improvements weren't to last, however, as the episodes became longer and more frequent, and her sedation had to be increased. Eve was almost never settled whilst awake. Eventually, she was almost never awake. By the beginning to middle of April, it was becoming clear that Eve was having no quality of life at all, and we were advised by the medical staff that if she didn't show improvement, we should consider ending her ventilation, and allowing her to pass away. Sadly, Eve didn't improve, but her condition deteriorated to a point where she was worse than ever. Whenever she was awake, she was having an episode of airway collapse. There was nothing that could be done to alleviate this that was sustainable in the long term, or fair to Eve. The medical staff continued to run all sorts of tests and scans. Eventually, we were advised there were other complex contributory factors to her breathing problems due to her chromosomal condition, which she'd never grow out of. Learning from the Consultants in charge of Eve that she would never have any kind of quality of life but would only continue to suffer, we made the agonising decision to have Eve taken off the ventilator.  In her last days Eve was moved to a side room of the unit. The nurses had filled it with fairy lights and made the clinical aspects of the room almost disappear. We spent quality time with her; reading her stories, lots of bath time, and cuddles with her family. Amazingly, she was alert and awake for most of this time with us, despite the high levels of sedation. Through a combination of short-term medicines and increased ventilator pressure, her episodes were kept to a minimum. She made us laugh and we had a perfect few days. Of course, we knew this wasn't sustainable in the long-term. On the night of Wednesday the 19th, the staff moved her cot out of the room and put in two foldout beds pushed together. We lay on the bed with her in between us, and cuddled her in a way that would seem totally normal for other parents, but for us was the most precious time of our lives. We sat and watched Finding Nemo together as she fell asleep, and at 2.15AM on the 20th, she passed away in our arms. As she was appropriately sedated, she wasn't aware when the machine was switched off - she drifted away peacefully in her sleep. Eve has touched our lives forever. As we sit typing this, a few days after her death, the grief is still extremely raw. To honour her memory, we would like to make a donation in her name to Ronald McDonald House, Glasgow of £10,000. This will be hugely beneficial to what is an entirely charity-funded "home-from-home", that allows families from all over Scotland, the north of England (and even further afield in some cases) to stay on the campus of the Royal Hospital for Children, whilst their child receives the lifesaving specialist medical care they need. We would like to match this amount with equal donations to the Neonatal Intensive Care Units in both Glasgow, and Ninewells. This will go a huge way towards helping extremely sick babies with complex needs. Whilst Eve's problems were too significant to be overcome, we were inspired to hear of some of the incredible work that has been done to save so many other sick babies. No one is prepared to have their child end up in an intensive care unit, but as we have learned firsthand, and witnessed from other families, it can happen to anyone.  The level of care and compassion shown in both Glasgow and Ninewells from the nurses and doctors really was second to none. We'll be forever grateful to them for being so kind and caring towards Eve. We were in Glasgow for so long, that we now consider many of the staff our friends. We would love to be able to make a difference to help sick babies and their families in the name of our brave little girl. It would mean the world to us to have your help. We will never forget her. Please donate what you can to help us reach our goal. Thank you. Michael & Karen Hughes (Eve's Daddy & Mummy)