This is Oliver. He was born on 26th September last year at 40+1 weeks. After a normal pregnancy I went into labour at 40 weeks. The baby was back to back and therefore I required forceps to help deliver him. This was in Poole hospital. As soon as Oliver was born he needed to be resuscitated and was taken straight to Neonatal unit with fluid in the lungs.
As the day went on he got worse and they found his heart was failing. He was promptly collected by the amazing Southampton PICU retrieval team of consultants, drs and nurses and rushed to their paediatric intensive care unit where he continued to deteriorate. We felt so lost and helpless, left on our own by the empty bay.
By the next morning he had crashed three more times and was intubated and being pumped full of drugs to keep him alive. His organs were failing and he was put on dialysis. As the day went on the consultants worked tirelessly to establish the cause of Oliver's problems. We were told that there was a good chance he wouldn't make it to the end of the day and to get family to come to meet him ASAP. We were devastated.
The consultants were in discussion with Great Ormond Street about the possibility of Oliver being transferred there on heart and lung bypass. The prospect was terrifying. As the day went on he began to stabilise and made it through the night with copious amounts if drugs and machines supporting him.
As the next few days passed in a blur he started to pick up and his body seemed to realise what it needed to do. Each tiny step forward gave us hope.
After 5 days in PICU I got to hold him for the first time. Amazing. I was completely overwhelmed.
Later that day he was transferred to the NICU and started to feed a little more through his ng tube. As he progressed the drs started worrying about brain damage due to the fact he had been cooled and without oxygen at times. But after MRI scans and various other tests it seemed he had no long lasting damage.
After 2 long weeks we were transferred back to Poole to continue to recover.
After 3 weeks we were allowed home.
The diagnoses was Persistent Pulmonary Hypertension of the Newborn and the left ventricle of the heart not starting. This then case multi organ failure. The cause is still unknown.
He is now nearly a year old and doing amazingly. He's no longer on medicine to support the heart and his latests scan and assessments show he is developing 'normally'. We are sure he will continue to grow into a happy healthy little boy, completely unaware of his traumatic start in life.
It's been the toughest experience of our lives and I think we have experienced every emotion possible. We can never ever thank the nurses and drs enough for their work and their support. We are also incredibly lucky to have our family close by to help. - especially with our other son Charlie.
The PICU is a very special place where staff work tirelessly to deliver the most amazing care both to their patients and the families.
Since leaving hospital we have started fundraising - cake sales, calendar sales, runs, a sky dive and next up a quiz night - and we will continue to do so to try to give a something back and help other Mummies and Daddies.
Isabelle and Holly's Story
In October 2011 our daughters Isabelle and Holly then 5 and 4 became very poorly with what we thought was just a sickness bug. By day 3 Isabelle was barely recognising us and Holly was showing the same signs. We took them to A&E at our local hospital in Dorchester and Dr's suspected they had E-coli. At this stage Isabelle was extremely poorly and we were advised that she would be sent straight to PICU Southampton, Holly's symptoms seemed to be less severe and it was decided she would stay at Dorchester hospital. I decided I had to go with Isabelle and we set off in the ambulance to PICU arriving just after midnight.
As soon as we arrived (which is a bit of a blur!) I was told exactly what was going on and as they plugged her into machines and made her comfortable, I was always aware of what was happening and I felt very involved and an important part of what they were doing, just being able to cuddle her and hold her had at all times. Once Isabelle was settled I was shown to a room where I could sleep and shower. I was a little worried as although I was only over the corridor I felt so far away from my poorly little girl. However I was able to come and go to the PICU unit when ever I wished no matter what time and a phone by the bed meant the nurses could reach me and I could go back and be with Isabelle quickly.
Isabelle and Holly's test results came back positive for E-coli, they both had renal problems and Isabelle needed dialysis. After 3 days of being apart Holly began to go downhill and it was decided that she would be transferred to the specialist renal team at Southampton, so at least they were both in the same hospital, but only time would tell if Holly would be as poorly as Isabelle. As the dialysis kicked in Isabelle seemed to improve and was able to leave PICU and head up to G4 where Holly was and both girls we lucky enough to spend a couple of days together in isolation. Holly's results started to improve, but Isabelle then developed HUS and suffered a small stroke and was again transferred to PICU and was left heavily sedated for about a week. Again the Dr's and nurses were amazing, we were always informed of what was happening and even when it was bad news we were told in a professional but caring manner. I never felt like I couldn't ask questions and most importantly I was able to be by Isabelle's side throughout. I was always worried to leave her, but I had to care for Holly who was still on G4 too. PICU staff were always in contact, by mobile or phoning the ward Holly was on.
After about a week Isabelle was woken slowly (the day Holly was discharged to continue recovery at home) and showed positive signs and she progressed so well 2 days after that she was back on ward G4 and continued to make amazing progress. That week Isabelle celebrated her 6th birthday with a big smile and a little girlie party in her room! A week after that and she was discharged home and our family was back together.
Today Isabelle is now 7 and Holly 5, both thriving and doing so well at school. We can't thank the team at PICU enough for the care they provided Isabelle (and of course G4 whom looked after both girls and worked with the PICU team in helping us have two healthy daughters again). We promised both girls a party when they got home and in October 2012 (exactly a year since the nightmare) they had a joint birthday party and big celebration for being so well. The girls decided that they didn't need lots of presents and so they told everyone if they wanted to give a gift then they would like them to donate money to Friends of PICU to help other children get better. Lots of friends donated online, but others gave the girls the money and in January 2013 we made the trip to PICU and the girls handed over a cheque for £100.
From the girls .. We are Isabelle and Holly and in October 2011 we were very poorly with E-coli. Isabelle spent a couple of weeks in PICU and we both spent time on the special kidney ward G4. In October 2012 we turned 7 and 5 and it was a whole year since we were poorly, so we celebrated with all our friends and family and had a big birthday party with a magician and disco. We decided that instead of lots of presents we would ask for money to donate to PICU. Then one day in January after we finished school we drove to Southampton hospital with mummy, daddy our brothers Bertie and Stanley and our new baby sister Tabitha-Ann, and visited PICU to donate a cheque for £100. We hope it helps lots of other children get better like we did!
Teri P's Story
Imagine, taking your 10 day old son and his 2 year old sister for their first family outing to the farm. 6 hours later you are in casualty and your son is fighting for his life. This was the situation we faced in November 2008.
William had been irritable all day, an upset tummy & not feeding. A lump under his right ear and a worsening condition meant we took him to A&E. But by the time we got there he was unresponsive and the resus team had to work on him to keep him alive.
I just wanted him to cry as whilst he was crying he was alive.
After being stabilised and given antibiotics, he was moved to PICU and we were told the next 24 hours were crucial and there were no guarantees that he would live. At this point, they could only guess what the infection was and treat everything in the hope they got it right. My tiny baby was hooked up to all the machines, wires covering him and I was too afraid to touch him in case I knocked off any of the monitoring equipment. There was just enough room to be able to stroke his cheek.
We were forced to leave him overnight and get some rest in the family rooms. I just prayed he’d make it through the night, and the nurses wouldn’t come to get us to tell us his condition was worsening. Fortunately he is a fighter, and although very sick, he made it through the first 24 hours.
After 48 hours, the blood tests came back. He was found to have late onset Group B Strep. GBS is an infection that affects new born babies and often leads to meningitis, disabilities and sadly children do die. William is one of the lucky ones. In addition, to GBS, he was found to have septicaemia and a blood clot in his groin.
He spent 5 days in PICU before being transferred to the ward for a further 2 weeks.
I hope that you cannot imagine the emotion to go from euphoria at the birth of your perfect son to utter dismay and fear that you may lose someone so small and precious. The doctors and nurses in PICU are amazing and without their dedication and care William may not be with us now. I know that we are very lucky to have William and I vowed that I would do whatever I could to help the unit.
On returning home, we decided that instead of Christmas gifts to our friends and family, we would make a donation to the unit. The company I worked for also made a donation and then once William was older I started to think about fundraising.
The first event in August 2009 was a children’s bike ride around Southampton Common. My daughter Emilia and 11 of her friends took part. We managed to raise about £3000.
The second event was a Quiz/Curry Night in March. We realised early on that without lots of hard work this wasn’t going to raise a huge amount of money. So we managed to get prizes donated from local business to do a grand prize draw. In addition we got a couple of items of football memorabilia and did a silent auction. In total we raised a staggering £3200.
The third event was a James Bond themed ball at Chilworth Manor. This was a great success and we raised over £4000.
I also ran the Great South Run (I’d never run before) and raised around £500.
I’d like to thank Tim (my husband), family, friends and colleagues for helping and supporting me and such a worthwhile charity.
Becky P's Story
Our baby, Jacob, was born apparently perfect in June 2010 and we went home the next day. At 4 days old, his breathing was fast and he was grunting so we took him to the GP, who thought it may just be reflux but sent us to the paediatric assessment unit to be on the safe side. We thought he could have a chest infection or something and never imagined what came next. While we were in PAU, he had some tests and his blood sugar was extremely low. The doctors and nurses began to gather round at this point although no-one knew what was wrong with him. The consultant said we would be staying in and my husband went home to get some clothes. While he was gone, the consultant started doing an ECG. Jacob started screaming and suddenly went very pale and floppy. The crash team was called and I rang my husband to come back. The consultant told us it must be his heart, we were told to kiss him goodbye and he was rushed to PICU.
When we saw him in PICU about an hour later, he had just had a second cardiac arrest and was surrounded by doctors and nurses working on him. The care and dedication they showed was amazing. We felt at the time that if the worst had happened, they would have done everything possible for him and they kept us informed and were completely honest with us at every stage. He was diagnosed with severe co-arctation of the aorta. His lungs flooded with blood and his kidneys, liver and other lower organs failed. No-one thought he was going to make it through the night and the PICU consultant told us she didn't think they would be able to do it as they couldn't get the blood to flow to his lower body instead of flooding his lungs but they would keep trying until his heart stopped. Amazingly, the staff pulled him through that night and the subsequent very rocky days to get him well enough for life-saving surgery. He had his first operation to correct the co-arctation 5 days later, at 9 days old. We went up to the paediatric cardiac ward when he was two weeks old but were back in PICU when he was a month old as Jacob needed a second operation (open heart surgery this time) to correct holes in his heart, which it was originally hoped could be corrected when he had grown a bit. We felt so confident with the staff on PICU, they were so dedicated and always happy to explain what was happening. Being able to stay in the parents’ accommodation was a big relief as well; we couldn't have coped with being away from him.
Jacob came home at 7 weeks old. We cannot convey how outstanding the care he received was or how grateful we are to now have a gorgeous, thriving 9 month old that no-one would ever know had very nearly not made it. We have lots of new heroes among the staff in PICU, particularly the consultant, doctors and nurses whose amazing expertise and determination brought him through that first horrible night. We can never repay the debt we owe them. My husband is a teacher and his school is currently fundraising for Friends of PICU via The Jacob Salisbury Appeal and we are planning to hold a first birthday party for Jacob and raise funds then as well. Our families have also been keen to help and have already raised funds by auctioning flowers from a family wedding and are including donation envelopes for Friends of PICU in invitations for my grandparents’ 60th wedding anniversary party as they have asked for no presents.
Donna W's Story
My son, Gary Westcott, was born prematurely at 27 weeks in our local hospital in Plymouth. We were told that he may not make it through the night but he fought hard and surprised everyone.
At 8 days old, we were told that Gary had Downs Syndrome, chronic lung disease and 2 holes in his heart. Despite all of these problems we were told that the outlook was positive and it was very likely that he would overcome these problems. However, at 4 months old Gary deteriorated and the staff in NICU sought advice from consultants at Southampton General Hospital, who immediately sent a team from PICU to retrieve him so that they could try and combat his health issues. That was 30th December 2009 and our first dealings with anyone from PICU.
The team arrived mid-afternoon and it was like something out of a film; they just swept into NICU and took over the situation. They were just so confident in everything they were doing and put me, who was a complete wreck, at ease almost instantly. Within hours of arriving in PICU, Gary was diagnosed with pulmonary vein stenosis and scheduled for a catheter to balloon his vein.
All through these tough first few hours, the doctors and nurses explained everything that was happening and always made sure that I was doing OK. Gary’s first operation went extremely well and within a few days he was moved to the cardiac ward, E1, and then transported back to Plymouth a few days later.
Unfortunately, within a couple of days of being back in Plymouth, Gary tested positive for RSV and again had to be retrieved by a team from PICU. Again, it was like watching the film, they just knew exactly what each other were thinking and worked brilliantly together and again I was instantly put at ease.
On this visit we stayed in PICU for about a month and whilst there Gary had surgery to close the holes in his heart. Unfortunately, after surgery Gary caught an infection and whilst I was falling apart, the nursing staff always stayed so positive and would often encourage me to take time out for myself. Once over this infection we were again moved up to E1 and then transported back to Plymouth a few days later.
Unfortunately, after just a week, Gary was once again retrieved and taken back to PICU after testing positive again for RSV. Luckily this time it was just for a long weekend and after being transported back to Plymouth we finally got to take Gary home for about a month.
This did not, however, last and Gary was admitted into our local hospital for a couple of weeks and then retrieved, AGAIN, by a team from PICU. After about a week, Gary went into cardiac arrest and a few days later after a lengthy discussion with the consultants it was agreed that we would turn Gary's ventilator off. This was 13th July 2010. The team of doctors and nurses that were with us on this day made the whole traumatic experience so much easier to deal with, everything was done when we were ready and when we wanted it to happen.
On each visit, there was always someone to talk to and always somewhere for me to stay so that I could be close to Gary. I made some amazing friends who I still have contact with today and because Gary was in PICU for so long I think nearly every nurse on the unit looked after him at some stage and they were all so lovely that they were like a surrogate family by the time we left.
Although Gary didn't make it, I believe that without the amazing care and treatment he received from everyone in PICU we would not have had him with us for as long as we did and for this we will be eternally grateful. Once again I would just like to thank everyone on PICU for the amazing work they do, they are truly all fantastic.
Emma W's Story
My daughter, Megan, who had complex heart condition was on PICU for a long time.
Sadly, she passed away at 13 months old. The staff made our situation easier by being friendly and great at their jobs. I also had a son, Lewis, who has also stayed on PICU for a bit.
Hanna D's Story
My son got diagnosed with Interruption of the Aortic Arch at 4 days old on 30th December 2008 and got rushed to Southampton that night. He had an operation the next day which went well but he went into shock at midnight on New Year’s Eve.
His blood pressure went up and down for days until his consultant thought he was turning a corner but sadly at 1.45am that night he died at exactly 2 weeks old, on 9th January 2009.
My mum and I were so grateful for all the care and support the nurses, doctors and surgeons and staff gave my son and us during that week and a half - they were brilliant! I know they done the best they could for him; he just wasn't strong enough.
I miss him every single day and tell my daughter, his twin, about him every day - how special and beautiful he is. I’ll always be grateful for Southampton giving me that extra time with him during that week and a half and I couldn't thank them enough.
Hannah-Kate H's Story
My daughter was born with a single ventricle condition and has relied on PICU for her survival after 2 Open Heart Surgeries; with at least 2 more Open Heart Surgeries to come in the near future.
I could not thank the PICU staff enough for what they have done for my little girl. I nearly lost her after her 2nd emergency surgery and it is thanks to them and the surgeon, theatre staff, etc. that she is still here.
With the possible closure of children's cardiac surgery at Southampton, I don't think another hospital could possibly compete with the quality of care and expertise that is provided on both PICU and the ward, E1.
Laura W's Story
After spending five days with our new arrival, Stanley, we were devastated when he became ill. After a traumatic few hours in our local hospital in Oxfordshire, we arrived in the early hours of the morning to Southampton General Hospital and rushed to the paediatric intensive care unit to see our beloved baby. A nurse came and asked us what we had been told and as we explained, her face suggested that our earlier optimism was unfounded and she went to get the consultant. The fact that this important man was still in the hospital at 2am in the morning was another sign that things were much worse than we thought. He sat us down and in the kindest way possible explained that Stanley had an incurable heart defect called Hypoplastic Left Heart Syndrome. In very simple terms, he had half a heart and there was nothing that they could do to fix it. The tiredness, blueish skin colour and lack of wet nappies were all as a result of Stanley’s organs shutting down due to a lack of oxygenated blood.
The doctor talked us through what this all meant, drew us diagrams and answered some of our questions, but the magnitude of what he was telling us was starting to sink in and we both broke down in tears. We were then able to go and see Stanley in the intensive care unit. It was unbearable. He looked so small and was on a ventilator with tubes in his mouth and up his nose. He had a catheter attached and drips and lines in his head, groin and hands. It was just so sad. Less than a week after giving birth to him, I was looking at him being kept alive by drugs and machines. The scene was too painful and we could only spend a few minutes looking at him. It had been an exhausting and devastating day so we went and settled ourselves into one of the family bedrooms to try and get some sleep as we knew that the days ahead were going to be no less traumatic.
The following day we met with the consultant again and he gave us more information on Stanley’s condition and started to tell us about the options available to us. Basically we had two choices. The first was a series of operations starting with open heart surgery at two weeks old, followed by an operation at 3 to 6 months old and then a third operation at about five years old. If Stanley even survived these major operations, which were very risky, then he would still only have a short life expectancy and we would easily outlive our son. Not only this, but Stanley and I would possibly have to live in Southampton Hospital for months on end.
The other option was ‘comfort care’ where his life support systems would be removed and he would pass away comfortably in his own time. No parent wants to make a decision like this and we took a couple of days to talk and think, but in reality we both knew almost immediately what the right thing to do was for us as a family. We knew that we had to let our son go now when he could pass away peacefully with his loving parents at his side.
The nurses and doctors were amazing and supported us throughout. They arranged for us to have Stanley christened, which was a very sad occasion and not how we had ever imagined. Although Stanley was asleep for most of the service, he did open his eyes as he was blessed and we took a great deal of comfort from that.
When Stanley was taken off his life support systems, we did not know how long we might have with him so made the most of every minute. He was either in mine or Gordon’s arms and over the next few days we really got to know him and caught a glimpse of the little boy that he would have become. He was quite the toughie and his fighting spirit shone through. He developed a little frown and looked so much like his big brother. We talked about what a force the two of them would have been. In fact we talked constantly about everything, cried a lot too, but above all made sure that we communicated throughout and stayed strong for each other. I also took the time to tell Stanley every single detail about us and his family, even his own birth! I felt that it was important that he knew us and how wanted he was.
In his final days, I was able to bath him and sleep in a bed with him. The team on the unit even allowed us to take him out for a walk in a pram. It was surreal doing all of these things with him but nonetheless, it was comforting and we will treasure these precious memories forever. The nursing staff suggested we take photos of him and although I was initially reluctant and felt that it wasn’t right to do so, I am now eternally grateful that I have this permanent record of Stanley’s short life. A memory box was given to me containing hand and footprints, some of Stanley’s hair, his ID labels and a teddy. These were all things that I knew would allow me to hang on to his memory.
It was an agonising few days as we did not know when Stanley would slip away from us. At least a dozen times he stopped breathing, turned blue and his little heart stopped beating for several minutes only to then take a gasping breath, open his eyes and ‘come back to life’ again. It was so painful saying goodbye to him each time it happened and emotionally exhausting. In the end we were actually willing him to stop holding on. We needed him to know that it was okay to let go.
When Stanley decided that the time was right to leave us, he closed his eyes and slipped away very peacefully. It was comforting to have had the chaplain there with us again. It was naturally extremely emotional and not only did we cry, but so did our very special nurse Kate. We had bonded so much with her and it was clear that she was feeling our pain as well.
After he had died, Kate offered to get him dressed in the outfit that I had chosen for him, as I had previously said that I would find it too difficult. When it came down to it though, I was Stanley’s mummy and I had to find the strength to look after our son myself. I carefully took off his clothes and changed his nappy and put him into his vest and candy striped babygro. I then put his pale green cardigan on that his nana had knitted and wrapped him in a family blanket. I was still conscious that I wanted him to be warm. It sounds silly but it was important to me that he looked cosy. Gordon and I then spent time giving him our final cuddles.
In the days immediately after Stanley’s death we set up a charitable donation page to raise money for the Paediatric Intensive Care Unit in Southampton as we were so grateful for the level of care and support that we all received. We have been overwhelmed by people’s generosity and are expecting the total to top £15,000. With Friends of PICU’s help we are in the process of purchasing something for the unit in Stanley’s memory that will benefit other children and families who are going through a difficult time, whose outcome we hope will be happier than our own. Stanley will live on in our hearts and will be talked about forever with love and adoration. He was a brave little boy and will forever be our cherished son and brother.
Vicky B's Story
My son has been on PICU a few times…
He was born with a Tetralogy of Fallot and the repair didn’t work so had a gastrostomy and an esophagostomy. He then returned after 9 months to have a gastric transposition and a jejunostomy.
It was lovely on PICU and I hated being anywhere else! The staff are fantastic, so helpful and understanding. They are amazing at their jobs; it’s like being in a bubble in there as its more isolated as everything is on hand and you feel like your child is being so protected.
The staff also offer support to the parents as well – such a fantastic team and place.
Emma E's Story
My daughter, Chloe, was admitted on to PICU in 2007, following a retrieval from our local hospital in Portsmouth. We had taken Chloe to hospital after she became unwell and she actually had contracted E-coli 0157. Sadly, despite the best efforts of the staff on PICU, Chloe suffered complications and passed away.
We were so impressed with the professionalism and dedication of the team at PICU, as well as their compassion and support at that terrible time that we decided, instead of buying flowers for the funeral, to ask people to donate money to PICU and our involvement with Friends of PICU began.
Chloe’s school also gave a donation and my mother found out that our local running club were doing a marathon on the anniversary of the day of Chloe’s funeral, so she decided to take part in this in order to raise enough money to buy a specific piece of equipment.
We managed to raise in total just over £4,000, over half of which was raised by my mother, and we decided to purchase a Nippy ventilator, which will enable a desperately ill child to go outside and will hopefully make their stay in hospital that much more enjoyable, as well as providing a valuable break for parents from the confines of the ward.
After becoming involved in fundraising for PICU, we realised what an enormous job Friends of PICU have in trying to buy equipment for the ward and ensure that the children there receive the very best of care.
We then agreed to take some collection tins, which is an ongoing project which we hope will help raise enough money, in time, to buy a new transfer ambulance. This is a vital piece of kit which makes all the difference when transferring desperately ill children, as we know from experience.
Friends of PICU is a wonderful charity to support and we are very pleased to be able to do our bit to make a difference.