This is Exeter -- IT was a room full of little miracles – babies born during the past year that were given little chance of survival. Many were very premature, one was born in the back of a car, but they have all been through a medical rollercoaster to make it to their first Christmas – a day their parents thought they would never see. And during a gathering to thank the neonatal unit at the Royal Devon & Exeter Hospital, they shared their remarkable stories that swung from despair to hope to joy as their babies defied the odds to make it home. They were brought together by SNUG (Supporting Neonatal Users and Graduates), a peer support service for neonatal families cared for at the RD&E. The group's co-founder Leanna Toms, of Newton Abbot, gave birth to Roo – weighing 1lb 7oz – at 25 weeks and one day. She said: "Roo was in intensive care for three months in total and the special care baby unit for another month after that. She had problems breathing for herself at that time and you just take things hour by hour and then day by day. "We stayed in four different hospitals throughout our neonatal journey and the care we received at Exeter was absolutely outstanding. "You never know if you are going to take that baby home until they tell you. I was terrified to bring her home. She had been in medical care for such a long time. But we have been very well supported by the RD&E." She formed the group after realising that there was little peer support group out there for parents going through what she did. "We are delighted with how well it has taken off and really happy that the neo-natal unit has supported us to take it forward," she said. "It would not be as big or successful without them. "After I left the unit I began working very closely with the RD&E and other parents. Since neonatal services became centralised some years ago, local parents of vulnerable babies find that often they stay in several different hospitals instead of just one. "This can be tough on families as they build up trust with the doctors and nursing staff. The RD&E understand how challenging moving around can be for families and are absolutely committed to ensuring families receive the maximum amount of support possible. "The matrons at the neonatal unit have totally embraced the idea of peer support and now SNUG's thriving service is benefiting over 100 families across Devon. "The RD&E has been instrumental in the formation of SNUG, which is the largest community based peer support service in the country, they are a shining example of how neonatal services can deliver family-centred care." *ROSIE Giles, 30, of St David's Hill, Exeter*, had a normal pregnancy and her 20-week scan was fine. But on a one-night holiday to Bath in January, shortly after dining at Jamie Oliver's restaurant, her waters broke. She was just 23 weeks into her pregnancy. "He was that impatient," said Rosie. "We made it to just outside the hospital and as they ran in to get medical help, I gave birth in the back of the car by myself. "It was the most terrifying experience of my life. It did not feel real – it was like some sort of scary nightmare that I would wake up from any second. "But there were lots of incredible nurses. He had bleeding on the brain. They got him into the hospital and ventilated and stabilised him. "It was a big rollercoaster, and they gave him a very slim chance of survival at some points. "Over the next few months we had several episodes of nearly losing him. He had a severe case of sepsis, lots of blood transfusions, lumbar punctures to help drain excess fluid from his brain. He was dependent on the ventilator for a lot longer than the doctors hoped, every time they tried to take him off he would sometimes cope for up to a few days but then would not be able to sustain his own heart rate and oxygen levels. "There were at least three occasions when the staff at Exeter saved his life, one of which we stood by and watched them giving CPR and thought we were going to lose him." Every time Alfie had to have the ventilator put back in it caused scarring in his trachea. This resulted in its narrowing which also made it very hard for him to breathe by himself. It was down to the doctors in Exeter who were able to take a video of his throat and send it to a consultant in Bristol who then realised Alfie needed immediate surgery to help him be able to breathe. "In March he had reconstructive surgery done on his trachea where they took some cartilage from his rib and used it to enlarge the area of his windpipe that was too narrow," said Rosie. "For the first few days afterwards it seemed to have worked but in the early hours I got the call to come over as it wasn't looking good. We almost lost him again that night but luckily they managed to ventilate him just in time. "He still needs 24 hours a day care at home. "Having him out of hospital is just amazing and terrifying at the same time. You get used to hospital doing all the care with nurses and doctors right there on hand. scared quickly grow in confidence. "You cope with it all because you have to. If you have moments to stop and think it is quite easy to break down. It is really intense. But it is amazing how positive you can be but that is what you have got to do. "Now we have got home, I am starting to process it a bit more. When you are allowed to stop and digest – oh my god. "It has been eight months full of ups and downs but we are so happy how he is developing now. It is hoped he will be off oxygen by next spring and the trach can come off in the next one or two years. "Aside from that he is really happy and chilled baby. Being part of SNUG has been incredible. There are moments where I am not sure what I would have done without it. It is so hard to find others who know what you are going through. "It feels like a weird dream. It has been the craziest year but the most wonderful as we have got Alfie at the end of it. "He was given a five per cent chance of survival after being born on the back seat of a car so early. But he has proved himself a real fighter. "He is the best Christmas present we could ever have." *EXMOUTH mother Donna Chalk gave birth to Jackson eight months ago.* He was born at 27 weeks and four days and weighed just 1lb 11oz. He spent three months in the neonatal unit in Exeter where she became aware of SNUG. "He was very small and sick and needed to be ventilated a couple of times and suffered infections," said Donna. "It was horrendous. We have other children and it was hard trying to keep it normal for them going back and forth to hospital. "The weight is everything and he gradually got bigger and stronger. There were times when we thought he would not make it. "There were mixed emotions when we came home. Once you leave hospital it is not over. We still have to go back regularly and the anxiety hangs over us. "But he is doing really well. Christmas will be very special this year because we have been through so much this year. The older children think the world of him. It feels different and we will have a family gathering that will be very special. "The benefits of the group are just knowing someone is there to give advice and encouragement that we are doing the right things. "If I had been a millionaire I could not have paid for better care than the neo-natal unit gave us. They were absolutely brilliant. They really are amazing people." PANEL 3: *MICHELLE Foster, 43, of Newton Abbot, gave birth to Olivia in March* at 31.2 weeks via emergency C Section after discovering she had stopped growing in the womb. Since birth she has suffered multiple infections and the family were also told when she was five weeks old that she had Downs Syndrome and had a hole in the heart. "She was so poorly during the third infection that she developed chronic lung disease and had to receive oxygen support which is ongoing," said Michelle. "She is now eight months old and still receiving oxygen therapy but currently being weaned down. Her hole in the heart is stable and she is developing marvellously. "At times you feel quite lonely and isolated from the rest of the world but the nurses at Exeter were amazing. Other mums in the unit in Exeter mentioned the support group and it was the best thing I have done. "She came home in June and I was so scared I cried all morning but then we were able to link into SNUG. "Obviously we are unsure what the future holds. When diagnosed with Downs Syndrome it was the biggest smack in the face but the way the medical staff in Exeter dealt with us really helped. Olivia is our little miracle and is doing so well. For Christmas we are just looking forward to spending time together as a family and enjoying Olivia." *LORI Hingston, 33, of Moretonhampstead, gave birth to Link at 30 weeks via emergency C section at Torbay hospital.* He was transferred to Derriford after he was stabilised and from there to Exeter. "After seeing Link initially for a few moments in Torbay I didn't see him again until I was transferred to Exeter myself," said Lori. "When I arrived I was extremely upset and the staff were amazing at informing me of everything that had happened whilst we had been separated. Link unfortunately had a necrotic area on his wrist from a failed arterial line that was fitted in Derriford. Exeter treated the area, photographed it and were so vigilant that my concerns never overwhelmed me. "At eight days old Link contracted bacterial meningitis and being taken into the quiet room to be told your son is again fighting for his life is something I still dream about. "It was horrific. You just switch off and go numb. All cope with tunnel vision. You can only deal with one minute at a time. The doctors and consultant handled it with such empathy and for that I cannot express my gratitude enough, they made sure I was fully aware of the situation and I could see that they genuinely cared and would do their best to save my son. "We were told to ring people we wanted to see him and that if he didn't respond to treatment within 72 hours then we would have to reassess the chances of him recovering. Link made us wait 78 hours until he responded. When Link started to improve the relief and joy we shared with the staff at the RD&E was incredible and knowing that to them he wasn't just another patient meant so much. Trusting your baby's life to someone is the hardest thing to do. Knowing it means almost as much to them makes it easier. Tiny, little baby but proved to be stronger than any of us were prepared for. "We were on the unit for almost six weeks, in that time Link had his ups and downs and needed a blood transfusion, he also spent a little time in isolation because of a suspected virus. "The nurses were considerate when I wanted to be alone and always encouraged me to do all I could for my son which has made a huge difference in how I look back on our time there and I feel that thanks to all the staff I've been able to form a powerful bond with Link. "We were encouraged to visit, ring and ask questions whenever we needed to. "After Link was discharged home he contracted meningitis again and ended up back at the RD&E in PICU, again the care he received was exceptional and I will never forget the gift the staff both on the unit, in maternity and on the children's ward gave me every time I look at my son. "He is our little miracle and has defied the odds. But being part of snug has made all the difference, knowing we are not going through it all alone and are part of a community that understands your worries. "I am also a volunteer for SNUG now and it is a real honour being able to give something back. "This Christmas is a huge deal for us and we will be able to have the whole family home together, which we have not been able to do before."
Reported by This is 6 days ago.
This is Exeter -- IT was a room full of little miracles – babies born during the past year that were given little chance of survival. Many were very premature, one was born in the back of a car, but they have all been through a medical rollercoaster to make it to their first Christmas – a day their parents thought they would never see. And during a gathering to thank the neonatal unit at the Royal Devon & Exeter Hospital, they shared their remarkable stories that swung from despair to hope to joy as their babies defied the odds to make it home. They were brought together by SNUG (Supporting Neonatal Users and Graduates), a peer support service for neonatal families cared for at the RD&E. The group's co-founder Leanna Toms, of Newton Abbot, gave birth to Roo – weighing 1lb 7oz – at 25 weeks and one day. She said: "Roo was in intensive care for three months in total and the special care baby unit for another month after that. She had problems breathing for herself at that time and you just take things hour by hour and then day by day. "We stayed in four different hospitals throughout our neonatal journey and the care we received at Exeter was absolutely outstanding. "You never know if you are going to take that baby home until they tell you. I was terrified to bring her home. She had been in medical care for such a long time. But we have been very well supported by the RD&E." She formed the group after realising that there was little peer support group out there for parents going through what she did. "We are delighted with how well it has taken off and really happy that the neo-natal unit has supported us to take it forward," she said. "It would not be as big or successful without them. "After I left the unit I began working very closely with the RD&E and other parents. Since neonatal services became centralised some years ago, local parents of vulnerable babies find that often they stay in several different hospitals instead of just one. "This can be tough on families as they build up trust with the doctors and nursing staff. The RD&E understand how challenging moving around can be for families and are absolutely committed to ensuring families receive the maximum amount of support possible. "The matrons at the neonatal unit have totally embraced the idea of peer support and now SNUG's thriving service is benefiting over 100 families across Devon. "The RD&E has been instrumental in the formation of SNUG, which is the largest community based peer support service in the country, they are a shining example of how neonatal services can deliver family-centred care." *ROSIE Giles, 30, of St David's Hill, Exeter*, had a normal pregnancy and her 20-week scan was fine. But on a one-night holiday to Bath in January, shortly after dining at Jamie Oliver's restaurant, her waters broke. She was just 23 weeks into her pregnancy. "He was that impatient," said Rosie. "We made it to just outside the hospital and as they ran in to get medical help, I gave birth in the back of the car by myself. "It was the most terrifying experience of my life. It did not feel real – it was like some sort of scary nightmare that I would wake up from any second. "But there were lots of incredible nurses. He had bleeding on the brain. They got him into the hospital and ventilated and stabilised him. "It was a big rollercoaster, and they gave him a very slim chance of survival at some points. "Over the next few months we had several episodes of nearly losing him. He had a severe case of sepsis, lots of blood transfusions, lumbar punctures to help drain excess fluid from his brain. He was dependent on the ventilator for a lot longer than the doctors hoped, every time they tried to take him off he would sometimes cope for up to a few days but then would not be able to sustain his own heart rate and oxygen levels. "There were at least three occasions when the staff at Exeter saved his life, one of which we stood by and watched them giving CPR and thought we were going to lose him." Every time Alfie had to have the ventilator put back in it caused scarring in his trachea. This resulted in its narrowing which also made it very hard for him to breathe by himself. It was down to the doctors in Exeter who were able to take a video of his throat and send it to a consultant in Bristol who then realised Alfie needed immediate surgery to help him be able to breathe. "In March he had reconstructive surgery done on his trachea where they took some cartilage from his rib and used it to enlarge the area of his windpipe that was too narrow," said Rosie. "For the first few days afterwards it seemed to have worked but in the early hours I got the call to come over as it wasn't looking good. We almost lost him again that night but luckily they managed to ventilate him just in time. "He still needs 24 hours a day care at home. "Having him out of hospital is just amazing and terrifying at the same time. You get used to hospital doing all the care with nurses and doctors right there on hand. scared quickly grow in confidence. "You cope with it all because you have to. If you have moments to stop and think it is quite easy to break down. It is really intense. But it is amazing how positive you can be but that is what you have got to do. "Now we have got home, I am starting to process it a bit more. When you are allowed to stop and digest – oh my god. "It has been eight months full of ups and downs but we are so happy how he is developing now. It is hoped he will be off oxygen by next spring and the trach can come off in the next one or two years. "Aside from that he is really happy and chilled baby. Being part of SNUG has been incredible. There are moments where I am not sure what I would have done without it. It is so hard to find others who know what you are going through. "It feels like a weird dream. It has been the craziest year but the most wonderful as we have got Alfie at the end of it. "He was given a five per cent chance of survival after being born on the back seat of a car so early. But he has proved himself a real fighter. "He is the best Christmas present we could ever have." *EXMOUTH mother Donna Chalk gave birth to Jackson eight months ago.* He was born at 27 weeks and four days and weighed just 1lb 11oz. He spent three months in the neonatal unit in Exeter where she became aware of SNUG. "He was very small and sick and needed to be ventilated a couple of times and suffered infections," said Donna. "It was horrendous. We have other children and it was hard trying to keep it normal for them going back and forth to hospital. "The weight is everything and he gradually got bigger and stronger. There were times when we thought he would not make it. "There were mixed emotions when we came home. Once you leave hospital it is not over. We still have to go back regularly and the anxiety hangs over us. "But he is doing really well. Christmas will be very special this year because we have been through so much this year. The older children think the world of him. It feels different and we will have a family gathering that will be very special. "The benefits of the group are just knowing someone is there to give advice and encouragement that we are doing the right things. "If I had been a millionaire I could not have paid for better care than the neo-natal unit gave us. They were absolutely brilliant. They really are amazing people." PANEL 3: *MICHELLE Foster, 43, of Newton Abbot, gave birth to Olivia in March* at 31.2 weeks via emergency C Section after discovering she had stopped growing in the womb. Since birth she has suffered multiple infections and the family were also told when she was five weeks old that she had Downs Syndrome and had a hole in the heart. "She was so poorly during the third infection that she developed chronic lung disease and had to receive oxygen support which is ongoing," said Michelle. "She is now eight months old and still receiving oxygen therapy but currently being weaned down. Her hole in the heart is stable and she is developing marvellously. "At times you feel quite lonely and isolated from the rest of the world but the nurses at Exeter were amazing. Other mums in the unit in Exeter mentioned the support group and it was the best thing I have done. "She came home in June and I was so scared I cried all morning but then we were able to link into SNUG. "Obviously we are unsure what the future holds. When diagnosed with Downs Syndrome it was the biggest smack in the face but the way the medical staff in Exeter dealt with us really helped. Olivia is our little miracle and is doing so well. For Christmas we are just looking forward to spending time together as a family and enjoying Olivia." *LORI Hingston, 33, of Moretonhampstead, gave birth to Link at 30 weeks via emergency C section at Torbay hospital.* He was transferred to Derriford after he was stabilised and from there to Exeter. "After seeing Link initially for a few moments in Torbay I didn't see him again until I was transferred to Exeter myself," said Lori. "When I arrived I was extremely upset and the staff were amazing at informing me of everything that had happened whilst we had been separated. Link unfortunately had a necrotic area on his wrist from a failed arterial line that was fitted in Derriford. Exeter treated the area, photographed it and were so vigilant that my concerns never overwhelmed me. "At eight days old Link contracted bacterial meningitis and being taken into the quiet room to be told your son is again fighting for his life is something I still dream about. "It was horrific. You just switch off and go numb. All cope with tunnel vision. You can only deal with one minute at a time. The doctors and consultant handled it with such empathy and for that I cannot express my gratitude enough, they made sure I was fully aware of the situation and I could see that they genuinely cared and would do their best to save my son. "We were told to ring people we wanted to see him and that if he didn't respond to treatment within 72 hours then we would have to reassess the chances of him recovering. Link made us wait 78 hours until he responded. When Link started to improve the relief and joy we shared with the staff at the RD&E was incredible and knowing that to them he wasn't just another patient meant so much. Trusting your baby's life to someone is the hardest thing to do. Knowing it means almost as much to them makes it easier. Tiny, little baby but proved to be stronger than any of us were prepared for. "We were on the unit for almost six weeks, in that time Link had his ups and downs and needed a blood transfusion, he also spent a little time in isolation because of a suspected virus. "The nurses were considerate when I wanted to be alone and always encouraged me to do all I could for my son which has made a huge difference in how I look back on our time there and I feel that thanks to all the staff I've been able to form a powerful bond with Link. "We were encouraged to visit, ring and ask questions whenever we needed to. "After Link was discharged home he contracted meningitis again and ended up back at the RD&E in PICU, again the care he received was exceptional and I will never forget the gift the staff both on the unit, in maternity and on the children's ward gave me every time I look at my son. "He is our little miracle and has defied the odds. But being part of snug has made all the difference, knowing we are not going through it all alone and are part of a community that understands your worries. "I am also a volunteer for SNUG now and it is a real honour being able to give something back. "This Christmas is a huge deal for us and we will be able to have the whole family home together, which we have not been able to do before."
Reported by This is 6 days ago.