Isabella, A beautiful Butterfly, A Dads Story
Hi everyone, my name is Dan Hill and I am a 46 year old very proud dad of seventeen kids. I always say seventeen as in our eighteen years of married life we have lost eleven babies during pregnancy, we lost Isabella tragically at just eight days old and we have five fabulous kids driving us mad at home. I am very, very proud and humbled to have been The Inspirational Father Of The Year and like probably all the other recipients of that award I am scratching my head a little as to why!!!! We don’t ask for recognition for what we do, we just do it cause we are dads….. we just can’t hold some of our kids as others can.
We, Jade and I, have always had complicated pregnancies and had already lost eleven babies in the early stages of pregnancy over the years but we had also had four wonderful kids, Charlie then 12 years old, Georgia 10, mason 3 and little Tabitha was almost two when Jade announced in early 2013 that we were to have another addition. I was a Search Dog Handler within the prison system having just returned from my 19th tour of Afghanistan and Iraq. It was a job I had always dreamed of and the new addition meant we had decided I would stay in the UK permanently and be close to them all. All was progressing well, work was fantastic and we settled into the daily routine that all expectant parents do until Jade developed severe pre-eclampsia eventually being transferred to Liverpool Women’s Hospital by emergency ambulance. I got there as quick as I could with Jade’s mum speeding up from Oxford to mind the kids at home. When I arrived Jade was pretty much out of it, her BP was dangerously high and although Jade elected to not deliver I was asked to make the decision for her ‘We deliver and we will try our hardest for the little one or we don’t and both mum and baby are in danger!’ Obviously I had to choose to deliver to give them both a fighting chance. At 11.04 am on the 10th July tiny, beautiful, perfect Isabella Hope entered our world crying and kicking at just 26 weeks and changed our lives forever. Jade was extremely poorly and was receiving constant care so I went to see my little butterfly in her incubator on the NICU. There she was, still crying softly but breathing unaided and so, so strong. The doctors were astounded, the nurses were cooing over her and there I was, looking down at the tiniest little girl and falling in love all over again. Jade was well enough to make a short visit to visit, a vigil she kept 24/7 for the next week. Isabella kept improving until three days later after a series of medical blunders caused a massive deterioration. Isabella had had a Universal Veinous Catheter (UVC) fitted to feed TPN fluids into the heart however, the doctor had to adjust the position and then should have X-rayed the new position. The X-Ray wasn't performed even though the local policy stated it should be and therefore the position of the UVC wasn't known. Instead of being just shy of the heart the line had skewered Isabella’s liver and the fluids were now filling up her abdomen and crushing her internal organs. Still no X-Rays were taken and when eventually they were the doctor still didn't cease the fluids. The consultant, on hearing that Isabella was deteriorating, rushed to the hospital from his home because she had been doing so well. Dr Chris Dewhurst is a leader in neonatal medicine and to me he is a hero, not just for his efforts in trying to save Isabella but also because he isn't afraid to put his neck on the line for the right reasons which I will explain in a second.
Chris immediately ceased the fluids and noticing that Isabella’s tummy was distended he started to drain the excess fluids to relieve the pressure on Isabella’s little heart and lungs. Immediately Isabella started to improve and over the next few days, with Jade constantly by her side, she became stronger and stronger to a point where we were told on day seven that we could look forward to taking our little fighter home in a month or two……….. The next morning Isabella died on her mummys chest, she was eight days old. The damage caused resuscitating her following the errors that were made had proved too much for her tiny heart to take. Chris Dewhurst was with us when she fell asleep for the last time and I am glad he was there as he had tried so hard to save her……. I had only held her once and that was as she was leaving us… ONCE!!!. Our world fell apart right then and there. The following weeks were a blur, I am a trained medic and my own doubts were confirmed when Dr Dewhurst ordered a post mortem and an inquest was arranged. Isabella was finally allowed to be laid to rest and with Jade by my side I carried our little girl past our family and friends to her tiny grave. Our inquest was not until October and we arrived to find the place full of lawyers and doctors all giving evidence. It was then that the truth about the neglect came to light. I cross examined (if that’s the right term) prompted by Jade elbowing me in the ribs regularly everytime we heard something that was blatantly incorrect. The doctor involved had stated that Isabella died due to her prematurity and denied any failure on his part…… we proved otherwise and subsequently the NHS admitted 7 counts of ‘sub optimal care’ and stated that ‘In all probabilities Isabella would have been with us had they not intervened’
We went home We had proved that our little girl hadn’t died, she was killed and she had fought so hard to stay with us despite having had that chance taken from her. It wasn’t enough…. She deserved better Jade and I sat down, we had heard at inquest that there was no national policy on the use of UVC’s and we couldn’t understand why!!! A simple X-Ray would have been enough to save our little girl!!! Why hadn’t they done one??? We decided right at that point that no other family would suffer our devastation, no more babies would be lost because someone decided to not bother following his own hospital’s policies. Justice For Isabella Hope came into effect that night. Justice For Isabella Hope: With the help of a friend Isabella’s facebook page was created and finally we could tell Isabella’s story. Baby loss of any type is a subject that people don’t talk about enough and we encountered many setbacks and negativity….. a word of advice….. don’t mess with Jade when she is on one!!! We are now at over 4500 followers and still growing. Campaign: We wrote to every medical board in England and Wales urging them to introduce a national guideline for the use of UVC’s but as expected we didn’t carry the weight needed to open doors, we didn’t even receive replies to our letters so as a desperate last resort I decided to go down the political route. Andy Burnham is not only our MP he was at the time Shadow Health Secretary and once we had met with him and his fab assistant Karen he was appalled at the lack of respect shown to us by the boards. Within days we had met with the Chief Exec of the GMC and his legal team!!!! We were getting in front of the decision makers at last and our little girl will have made a difference. It took two years but in the summer of last year The BAPM announced that there will be a set of national guidelines rolled out on the use of UVC’s in neonatal babies across England and Wales. This could save 50 babies a year who are at risk and never again will any family lose their wonderful little ones needlessly. By the time Isabella would have turned 21 she will have possibly saved a thousand tiny lives. That is some legacy! We have since had our rainbow Meredith who despite also being prem has helped us to smile again but is a daily reminder of everything we’ve lost. Moving On Wow!!! How crap is it!!! Our campaign had succeeded, I couldn’t work because Jade was struggling, with four children at home she hadn’t grieved and to be honest I was a mess too!! I had ploughed so much into the campaign that now I had no direction and I had nowhere to turn. There seemed to be no help for angel dads out there and I needed help. That’s when I was approached by Paul Scully-Sloan of Daddys With Angels. He had seen our campaign and heard of what we had achieved and he pretty much held my hand when I needed it. I read about his journey and what he has achieved and done to help grieving dads through DWA and I began to get more involved. Paul subsequently offered me a voluntary admin position on the DWA sites and I happily accepted. I now had a purpose, something to be involved with and I found that by helping other dads it was actually helping me. I now spend whatever spare time I have talking to dads, guiding those with new losses to gradually accept that their lives have changed and hopefully lifting the guys that are struggling on their darker days. It’s rewarding, it’s satisfying when you see a guy go from struggling to strength and see them helping others. Shortly I will be fully qualified in Bereavement Counselling and I aim to continue helping others through the devastation and just giving them somewhere to go when they need it. It’s fair to say DWA probably saved me and I am very proud to be giving back to Paul and the team. Volunteering As well as DWA I also tutor ex-offenders in Health and Safety and get them qualified in CSCS so that they can find work in the construction industry after release. The prison system isn’t always about punishment it can also give people a chance to change their lives for the better and I get a massive sense of achievement when someone with a career of criminality visits me to tell me that they have secured their first job in a decade. I have just qualified as a Football Association Coach and I currently volunteer to coach the academy kids at Earlestown Athletic Junior Football team. These are kids from all backgrounds and social demographics but they all share a passion for football. Watching them grow from shy little 5 year olds into confident, enthusiastic team players is a buzz that can’t be measured and it’s changing their lives. Work I’m back in uniform now having returned to the Prison System where I work for G4S as a Prison Custody Officer in the North West. Not many there know our story but I work with some awesome Officers and those that do know have shown total support for what both Jade and I do. I am very proud of my job and I truly believe we make a difference to some of the lads that come through the system. Our campaign still moves on, we will save more babies, Isabella will continue to make a difference, she was a fighter, she amazed the medical profession but above all she is our daughter and as long as I have a breath left I will continue to help others in her name.