LOUIS
Louis Dillon is a past patient of COSMIC. His mum Clair has this to say about…
LOUIS
Louis Dillon is a past patient of COSMIC. His mum Clair has this to say about her son’s stay on PICU:
On October 25th 1998 my two and a half year old son, Louis, was rushed to St Mary’s Hospital in Paddington. He had been poorly for a few days and an out-of-hours duty GP referred us to our local hospital, Frimley Park.
On arrival there we were told they suspected he had meningitis. Everything happened so quickly – we had no time to gather our thoughts at all. Within hours our baby boy was in intensive care in St Mary’s, being cared for by the most amazing, kind and passionate staff possible.
We were shown to the parents lounge and everything that was going to happen was explained to us. We were also told that the doctors and nurses would try their very best but to be prepared for the worst just in case. However, nothing ever prepares a parent for this; one moment you have a sickly toddler, the next you are listening to the worst possible scenario imaginable.
We were given a comfortable room to stay in and a meal card for myself and Louis’s dad, enabling us to stay close to him and be nearby should his condition change. Louis had a collapsed lung during all the events in PICU.
It was a scary time for us and all of our family, but the staff were brilliant and supportive. One night, there was a fire on one of the floors above, and we were being prepared to evacuate, but with the firemen fighting the fire and the ward staff organising us all, the situation was thankfully under control before the children in the unit and ward next door had to be moved.
Soon after, Louis’ condition improved and his diagnosis changed to toxic shock syndrome. After a week in PICU, Louis was brought out of his sedation; this was the most nerve wracking part, seeing if there were to be any long-term effects from the disease.
Louis’ recovery was quite quick. He has Asperger’s Syndrome, although we will never know if this is from his illness or not. Louis has never had it easy, and finds it difficult to fit in at times, but he is a strong, determined teenager who I am so proud of.
As a family we are indebted to the magical work of all the staff at St Mary’s PICU. For Louis’ 3rd birthday we had a huge party raising funds for the unit. In 2012 Louis and myself ran the Bupa 10k through London for COSMIC. My 40th birthday last year was also a charity event and I asked for no presents only donations to the charity.
The treatment and support we received makes us very humble. The PICU at St Mary’s Hospital is a sad and happy place to be and we are forever grateful to be part of the COSMIC family.
Thank you for giving me the chance to express what an amazing job everybody does!
DEXTER
Dexter has always been susceptible to chest infections and had previously…
DEXTER
Dexter has always been susceptible to chest infections and had previously been admitted to hospital. So when he developed a cough, I took him to our GP who checked Dexter over and gave him antibiotics. During the afternoon, he started to get worse, so I decided it was best to get him seen at the hospital.
My husband Mark was working in America, so I went to the local A&E. Dexter was seen quickly and after a chest X-ray a doctor told me it was a chest infection. As a precaution they would keep him on the ward for some antibiotics and oxygen. I felt worried but as this had happened before I assumed it would be the same as last time and after one night of oxygen, we would be sent home but as we got onto the ward things dramatically changed.
Dexter became more distressed and began grunting, it was clear he was really struggling to breathe.
Before I knew it the room was full of doctors and nurses. I was scared and really didn’t know what was going on. They tried to bring Dexter’s oxygen stats up by using several different machines, but it was getting lower and lower. A doctor explained to me that they wanted to move him and that they would be putting Dexter to sleep and on a machine to take over his breathing. I spoke to Mark on the phone and through tears tried to explain what was going on. It was all so hard to understand, an hour ago I was telling him not to worry and now I was telling him Dexter needed a machine to breathe and was being moved to an intensive care unit.
The next few hours were a blur. I was shown two X-rays, the first one taken when we first got to the hospital and the second one had just been taken. Dexter’s lungs had almost completely become full with the infection. The doctor explained the transfer to PICU. I knew nothing about St Mary’s PICU but they advised me it was an amazing unit.
The CATS team arrived and allowed me to watch and ask questions while they worked quickly but calmly. I felt so helpless looking at my baby on a ventilator with tubes everywhere. They were outstanding in the way they patiently prepared Dexter for his journey to intensive care.
We finally arrived at St Mary’s PICU at 5am. As they settled Dexter onto the ward, I was taken to the Parents’ Room where a nurse sat with me as I asked question after question, I immediately felt secure. I was then taken to Dexter while I sat by him for what seemed like hours. It was going to be a long process to get his lungs clear and find out why this had happened.
Mark finally got to the hospital at 11am straight from the airport. We were able to speak to a doctor to find out the plan for Dexter. As we sat by his bed worrying about what was going to happen and trying not think the worst we were constantly being reassured by Dexter’s one-to-one nurse, who never left his room. We were reminded that we needed to eat with lunch being provided on the ward and that afternoon they sorted a hotel nearby for us to get some rest, as at this point we had both been up over 24 hours. I have never left Dexter’s side in a hospital before, but with his wonderful nurse providing one-to-one care and the promise of being contacted if anything at all changed, we felt he was in the best possible hands.
Dexter stayed in St Mary’s PICU for 5 days. During this time he saw two amazing doctors daily and was cared for by over 10 different but equally amazing nurses and physios. Each and every member of the PICU unit was approachable and caring, nothing was ever too much.
Dexter was diagnosed with a severe chest infection and is under our local hospital and GOSH for immunology issues. He is a normal, happy and extremely cheeky 2 year-old that loves life!
This is the most difficult time that we have ever been through and we are so grateful for all the care that we all received at St Mary’s – we have COSMIC to thank for that!
You never really know how important these services are until you need them and without these services this could be a very different story.
LUCY
It’s a moment we won’t ever forget. We took our 8 week-old daughter Lucy to..
LUCY
It’s a moment we won’t ever forget. We took our 8 week-old daughter Lucy to A&E because she looked grey and limp. She had been born 8 weeks prematurely, and had a cough and cold for 5 days, and she was getting worse. She was admitted to Chelsea A&E, and just half an hour later we were in a life-threatening situation. Our daughter was having severe apnoeas of up to 60 seconds. Out of nowhere the doctors and nurses appeared and we were asked to leave whilst they took charge. The doctors decided that Lucy would need to be intubated, so that they could control her breathing. Once she was stable, they decided that she would need to be transferred to an intensive care unit at St Mary’s by CATs ambulance. Our tiny little daughter was put into what looked like a space shuttle to transport her to A&E. I couldn’t go in it with her; I thought she was going to die.
At St Mary’s PICU the doctors explained that Lucy was seriously ill and how they would look after her. My husband and I had to learn fast, we had never been in an intensive care unit and we didn’t know what a ventilator was. The doctors were fantastic at explaining everything. Lucy was intubated and sedated. For a nightmare 3 days she got worse and worse. The X-rays of her lungs showed she had a severe case of bronchiolitis from 2 viruses, the rhinovirus and the human meta neuron virus. Every time the X-ray was taken her lungs looked worse. The doctors kept checking her bloods, and taking blood samples. We couldn’t pick up our precious daughter; she laid flat and was lifeless covered in tubes. The sedation had made her puffy; she didn’t look like the Lucy we knew. It felt like each day there was more bad news. Lucy would need to be moved on to a different ventilator, she would need a blood transfusion, she would need a central line put in and so on. The doctors and nurses were amazing the whole time, taking care of Lucy, and explaining what was going on to us. We worried and worried. Was she going to make it?
On Easter Sunday the doctors had good news for us, the X-ray showed that her lungs were getting better, Lucy was turning the corner. They tried to move her off the oscillating ventilator, but, unfortunately, she couldn’t cope. The next day they tried again, and it worked, then it was a matter of weaning her off the oxygen. Eventually she was transferred back to Chelsea and Westminster where we spent another 5 days getting her back to feeding normally and sleeping normally. When she came out of the sedation, she was so jittery and distressed. She needed to be held for 3 days and 3 nights, it was as if holding her made some of the pain go away. Eventually she was discharged.
At home, we tried to get her back on regular milk and regular sleeps, but she still seemed to cry more than a normal baby. Eventually I took her to see an osteopath who helped to relax her muscles and realign her. It was amazing to see her getting better.
I was petrified when she came home that she would pick up another bug from her big brothers. I kept her out of public places, I kept her away from her brothers when they had bugs. Each day she grew bigger and stronger.
Lucy is now a healthy, happy and chatty little 3 year-old. She loves ballet, playing with her brothers who adore her, seeing her friends, and reading books. The only scars she has from the ordeal are the little pinpricks from the blood samples.
What got us through the whole ordeal were the amazing doctors and nurses, we knew she was in the best hands possible and they would do everything possible to help her to live, and they did. Thank you to everyone who saved her.
SOPHIE
In June 2001 I was looking forward to celebrating my birthday with my wife and..
SOPHIE (WRITTEN BY HER DAD, JOHN)
In June 2001 I was looking forward to celebrating my birthday with my wife and daughter Sophie, who was then aged 4. After nipping for a swim after work, I arrived home and a neighbour came rushing out to say that Sophie had been taken to the local hospital after trapping and cutting off part of her finger in the door.
My heart sank, but I rushed to the hospital. From the outset I could see that Sophie would need surgery to reattach part of her finger. She was quickly moved to Mount Vernon Hospital’s plastic surgery unit.
It was a nerve-wracking time for both my wife and I but we were reassured by the fact that the accident could have been much worse and the plastic surgeon was cautiously optimistic about the chances of a successful operation. Sophie was taken to the operating theatre. Hours passed and I became increasingly worried. The doctor arrived and explained that Sophie had had a bad reaction to the anaesthetic and had aspirated during surgery. As a result, some consumed food and gastric juices had entered Sophie’s trachea and lungs. We were told that Sophie would need to be transferred to the children’s intensive care unit at St Mary’s Hospital.
Nothing can prepare you for the news that your child is so ill that they need to be transferred to a critical care unit. At 1am, having had no sleep, Sophie’s simple accident had turned into a nightmare for us all.
We arrived at St Mary’s Hospital in a state of shock, disorientation and worry. However, from the moment we arrived we were struck by the professionalism and expertise of the team at St Mary’s. The team greeted us, explained what would be happening, and continued to give us regular updates throughout Sophie’s stay. Sophie had to undergo some gruelling physiotherapy to dislodge the food and gastric juices that had become stuck. It was tough but the team were amazing – I really can’t describe the sense we had as family of truly being in the care of an expert team – it was so reassuring. Sophie’s physiotherapy went really well and within 46 hours she was discharged.
I will never forget that day or night and the time we spent on the PICU, and how such a simple accident turned into potentially our worst nightmare and could have happened to anyone. As a parent, you try to keep it together for your child and family through everything, you want to be strong, but the pressure of knowing your child may die is so overwhelming. You’re in complete shock and just have to take one step at a time.
It was only years later that I truly grasped the huge impact Sophie’s time on PICU had upon me. I realised that I had not dealt with the trauma and stress of that experience, and it was really affecting my life and health. I realised that I had to do something to address and process what had happened on the unit and decided to take part in the COSMIC Walk.
It was one of the best decisions I ever made. Not only is it a great family day out, there is also a huge a sense of community, of shared experience, of understanding – you get to meet and talk to people who have been through a similar experience, who understand what that means, and to meet all the COSMIC supporters. Many of the staff from the unit attend and is led by Dr Parviz Habibi. I also decided I needed to go back to the unit to really face my fears, so I arranged to pop in that day. It truly was difficult, but having done that and attended the COSMIC walk I felt like a weight had been lifted. For anyone who is struggling to cope and process their time on the unit, I would say, please don’t keep it all inside, take a positive step forward and come along to the COSMIC walk – it’s such a lovely day of shared understanding – it’s a great way to reconnect and does help you process what you went through.
Sophie is now a happy 18 year-old, and I am an extremely proud dad. I was worried that she would be bullied because she has part of her finger missing, and there is a such pressure on young women and body image, but she has been strong and is now going on to study psychology at university. She even did work experience at Imperial College and plays amazing piano!
ELLIOT
Even as a tiny baby, Elliot was full of life (and quite a handful), so when overnight…
ELLIOT
Even as a tiny baby, Elliot was full of life (and quite a handful), so when overnight he became very sleepy and lost interest in feeding, we knew something was wrong.
He was just three weeks old when it happened, and it was incredibly shocking how quickly he went from being a healthy baby to seriously ill overnight. In the evening Elliot had seemed his “usual self” (as much as we could tell in that short time), feeding most of the evening before falling asleep around 11pm. He woke up in the night and seemed a bit unsettled and was sounding slightly nasal in his breathing. He didn’t have a temperature so we thought he was just tired and snuffly so we settled him back to sleep. When he woke in the morning and didn’t want to feed, we took him straight to the doctor who told us to take him to our local hospital in Ealing. On our way, Elliot’s condition deteriorated rapidly. He looked very pale and mottled and, while being checked by the hospital doctor, his eyes suddenly rolled back in his head. It was terrifying.
Immediately he was taken into another room and there were twelve people surrounding him, all trying to stabilise his condition. He was wired up to several machines while a doctor explained he had sepsis and would need to be transferred to the intensive care unit at St Mary’s hospital. It was the most devastating shock, we felt desperately scared for our tiny boy who we were only just getting to know but already loved more than anything.
The ambulance journey passed in a blur, though I do remember the exceptional kindness and sympathy of the CATS (Children’s Acute Transport Service) team that transferred us at St Mary’s.
Seeing Elliot in the intensive care unit was utterly heart-breaking. He was pumped with lots of fluids which made him look much bigger than he was and was laid out straight on his back. He was hardly recognisable from the curled up newborn we were used to holding – it hurt to look at him. The amazing staff at St Mary’s couldn’t have been kinder or more supportive. They helped to involve us in the little ways we could try to care from him, like placing my clothes with my smell around him, as we desperately wanted to look after him.
The COSMIC charity was a great support throughout. The information leaflet they provided explaining what happens at PICU was very helpful as we had no clue what to expect. We were also extremely grateful to COSMIC for arranging a local hotel for us as we were too dazed to plan anything. (I’m very pleased to hear that COSMIC are raising funds to create on-site parents’ accommodation as all parents want to be as close as possible to their children at this awful time.) I was expressing milk around the clock to maintain my milk supply and frequently shuttling bottles to the hospital to be frozen for him.
After an excruciating 48 hours of not knowing Elliot’s diagnosis or prognosis, we were told Elliot had the very serious group B strep bacterial infection, and suspected bacterial meningitis.
The consultant explained he would survive but that there could potentially be brain damage and life-altering after effects – only time would tell as he developed. Even now, I don’t know how we got through that time. It was impossible to process all the potential ways our son might suffer on top of all he’d already been through.
After a week in intensive care, he became stable enough to be transferred to the paediatric ward for a further week before we were discharged for treatment at home. It was a huge relief when he was brought out of his coma. He quickly picked up feeding and it felt amazing for us to be able to care for him as parents again. It was a tough road to recovery as Elliot was very unsettled in the months that followed and we were very anxious about his development, particularly as an MRI scan indicated some signs of damage to his brain.
Thankfully, so far we have been incredibly lucky with Elliot’s recovery. Elliot is now two and a half and is developing brilliantly with no apparent signs of any developmental difficulties so far. It is an absolute joy to see the happy boy he’s become – he is full of energy and curiosity about the world. We’re incredibly proud of him and every milestone he achieves. Now that Elliot’s talking, he is very chatty, and it gives us huge pleasure to see his personality coming through more and more each day.
We cannot ever thank enough the amazing staff at PICU and the great work that COSMIC does to support families in such terrible circumstances.
AMELIA
I remember it as if it were only yesterday. That low grunting sound that my 9-week…
AMELIA’S STORY (WRITTEN BY HER DAD, JOHN)
I remember it as if it were only yesterday. That low grunting sound that my 9-week-old daughter, Amelia, was making on a sunny Sunday.
She’d had a little cold for a couple of days, so my partner Michelle and I had been keeping a close eye on her, but it was on that Sunday when we started to get a bit concerned. Whilst she slept on me that low grunting started. I knew that something wasn’t right so I woke her up, but she wouldn’t open her eyes properly and felt like a rag-doll. Seeing a temperature of 40C, we immediately drove to nearby King George’s Hospital in Essex.
We had no idea what was wrong with Amelia, but when the triage nurse in the Children’s A&E took one look at her and subtly called for help, it quickly became clear that our daughter was very sick. At that moment Michelle and I both felt fear like never before. Seeing our perfect baby girl with several pairs of hands all over her with bits of machinery and wires all criss-crossing over her tiny body is an image that I’ll never forget. We felt numb, completely helpless and although I asked what they thought was wrong, it wasn’t until later that the word ‘meningitis’ was mentioned.
Amelia’s condition worsened in the following hours. She suffered several seizures and was moved to the resuscitation room in the main A&E. The doctors were now almost certain that Amelia had contracted meningitis and they had begun treating her with antibiotics to help fight off any infection as quickly as possible. Amelia was also fighting the infection herself, which was probably causing the seizures. Time flew by and before I knew it, we’d been there for nearly 10 hours and the situation looked very bleak. With our family there, many prayers were made.
It was decided to move Amelia to a specialist intensive care unit that would give her the best possible chance of survival. The care that she’d received at King George’s had been absolutely incredible, but they could do no more. The CATS team (Children’s Acute Transport Service) were called and quickly arrived, and suddenly there were two paramedics by Amelia’s side with a very strange ‘pod on wheels’. We watched as the calm CATS team carefully prepared our baby for the most important journey of her short life, constantly explaining everything to Michelle and I. I’d never seen calmness under pressure like it before, it was so impressive.
Just a quick 18-minute drive after we kissed her goodbye, we were taken to the family room based in St Mary’s PICU. We both sat there in silence, crying and clinging onto each other waiting and praying for good news. After the doctor told us that Amelia had been settled into a bed on the ward and had been stabilised, we were given a voucher for a local hotel. A bed, running water, peace and quiet just yards from where our daughter was fighting for her life was a godsend.
Once called at 7am we made our way back to the hospital to see Amelia. She looked so tiny and fragile in the middle of a huge cot with machines surrounding her all bleeping in unison. We were introduced to the nurse who was taking care of her for the next 12 hours and watched as she constantly monitored our baby. How any of the staff are able to do what they do on a daily basis will always astound me, especially when the children’s parents are two feet away, scrutinising their every move. They’re very, very special people.
Michelle and I were by her side the whole time, taking turns to read and talk to her. We also spent time in the waiting room along with the other parents. We all had our moments in there, but I think we all felt like we were together. Although we had very mixed feelings seeing parents come and go over time, it gave me great strength and reassurance to know that what the PICU staff were doing was actually working.
We were soon given the news that Amelia had been diagnosed with Group B Streptococcus, a rare form of bacterial meningitis that usually affects newborn babies and often leads to the worst of outcomes. I said that Amelia was undoubtedly in the best possible place and I just knew she was going to get better at that moment. Virtually from then Amelia’s condition improved and it was clear that she was going to survive. Soon she was taken off the ventilator and brought out of sedation, and we’ve never been so happy to hear her cry! Being able to hold, feed, even change her nappy allowed us to feel like parents again.
Over the next weeks Amelia’s progress astounded doctors, and soon she was able to go back to King George’s Hospital. Her MRI scans showed damage to Amelia’s brain, indicating she would have ‘problems’ in the days to years ahead. But now 3 years later Amelia is a very happy and cheeky normal little girl. She’s extremely bright and thus far has shown no after effects as a result of her ordeal. She’s a shining example of the fantastic work that all the staff at St Mary’s and COSMIC do every single day of the year and she’s just one of many, many similar success stories. We will always be in their debt and cannot thank them enough for saving her life.
The level of care that Amelia received right from the start at King George’s, during the transfer with the CATS team, whilst at St. Mary’s and the several outpatient appointments in the two years following her ordeal was nothing short of incredible. Every day that Amelia spent on the PICU, COSMIC took care of Michelle and me. They provided hotel rooms every night and were always around to give us support when we needed it. Without them, the most difficult times of our lives would’ve been so much harder as we wouldn’t have been able to be near our baby girl whilst she battled to stay alive. Words can’t express the level of gratitude we feel and long may COSMIC continue to provide this vital service to parents who find themselves in such devastating situations.
John went on to cycle London to Paris with Team COSMIC in 2012 and also took part in the 2014 and 2016 London Marathons for COSMIC! His family are also regular COSMIC walkers, helping us whenever they can, and John’s brother-in-law Lewis also took part in last year’s marathon on behalf of COSMIC.
GRACE
Grace Bradburn was admitted to the Royal Berkshire Hospital on the 24th March 2007…
GRACE (AMAZING GRACE, A FAMILY’S STORY)
Grace Bradburn was admitted to the Royal Berkshire Hospital on the 24th March 2007, on her first birthday, as the chicken pox she had been suffering from had become more severe. In the week that she was in hospital her condition worsened, and she was transferred by CATS Ambulance to St Mary’s Hospital and came to our COSMIC Ward.
It soon became clear to the PICU medical team that Grace’s immune system was not functioning properly. Whilst she was on our unit, research was initiated to find out as much as possible, as quickly as possible, and this led to some innovative treatments for Grace. She benefited from life support equipment, genetic sequencing machines and research, all funded by COSMIC. Since her time in PICU, her family have always spoken highly of the outstanding care given by the medical team.
For three weeks, Grace bravely fought for her life, but without her immunity her little body could not repair itself. On 24th April 2007, Grace sadly passed away aged 13 months.
Since the day Grace lost her battle, her tough fight and bravery has never been forgotten by her family, friends, COSMIC and St Mary’s PICU. Her incredible family felt that they wanted to deal with her passing with a positive light – through fundraising and enabling research to further understand her rare condition and help children with the same illness in the future.
Professor Levin, who cared for Grace, and his team at Imperial College continued researching after her death and were able to discover that Grace was missing a large chunk of Chromosome 7. This vital chromosome includes a gene that is an essential component of the viral-detection pathway. Without this gene, Grace’s immune system was unable to fight viruses like chicken pox.
Grace’s genetic impairment could have only been discovered through an illness like the one she suffered. But comfort has been found in the knowledge that her case will allow the Medical Profession to discover more about the workings of the human immune system; and that her death has meant that many other sick children will benefit from the funds that have been raised in her memory.
To this day, the Bradburn’s have raised over £100,000 in memory of Grace. This incredible amount has been achieved through doing lots of different activities including attending the COSMIC Walk every year, cycling the Dunwich Dynamo and from London to Paris, and getting communities involved through rotary clubs, restaurants and carnivals! Family, friends and kind supporters also continuously give to Grace’s Just Giving In Memory page. This amazing effort and amount raised has made a huge difference to the lives of hundreds of children, parents and PICU staff. For this, we cannot thank the Bradburn’s and their supporters enough.
Grace’s amazing story perfectly represents all the incredibly brave, tough patients and families that COSMIC has and will continue to support for many years to come.
SOFIA AND PHILIPPE
On 21st October 2013, our Philippe and Sofia were born 7 weeks early. They were so tiny and yet…
SOFIA AND PHILIPPE’S STORY (TOLD BY THEIR DAD, EDOUARDO)
On 21st October 2013, our Philippe and Sofia were born 7 weeks early. They were so tiny and yet so strong that 2 weeks later we were able to go home…
After their first vaccinations on Tuesday 18th December, Philippe started breathing a little more heavily and by Thursday night he was really struggling to breathe and started coughing. On Friday morning we took Philippe to our GP, who suspected he had contracted bronchitis and advised us to immediately take him to hospital. He also told us to take Sofia for a check-up at the same time as she might have contracted a similar virus.
We took them to the children’s A&E at Chelsea and Westminster (C&W) Hospital and Sofia was soon given the all-clear. But they confirmed that Philippe had bronchiolitis so he needed to be given oxygen and monitored overnight in hospital. That night my wife stayed with Philippe while I took Sofia home.
We both had the feeling that this was going to get worse, but unfortunately we could not imagine how much worse.
The day after, we swapped so I could spend time with Philippe. When I got there he seemed a little more comfortable, but his condition had not improved and throughout the day he got worse. He had to be transferred from the ward to the Paediatric High Dependency Unit (PHDU) and put on a SEPA machine to control his breathing. What happened after was very quick, but to me seemed like an eternity. After a few minutes on the SEPA machine, Philippe had an apnoea (stopped breathing) and a team of doctors and nurses were around him in seconds to help him. My whole world seemed to collapse in one moment. I was advised to call my wife as Philippe had to be sedated, intubated and transferred to the closest Paediatric Intensive Care Unit (PICU). Once my wife arrived we were explained in detail what was going to happen. We were terrified, but the team at C&W were really supportive and helped by talking us through the process step by step.
Once Philippe was ready, the CATS (Children’s Acute Transport Service) team arrived and they told us they were going to transfer him to St Mary’s Hospital in Paddington. We went with him in the ambulance and it was heart breaking seeing this little man, who up until a few days ago was full of life, completely still in what looked like a little space shuttle. We got to St Mary’s very late at night and we were immediately offered a hotel room to rest. Being provided with a hotel room by COSMIC was a great support as we didn’t have to think about going home and could stay close to Philippe. Once Philippe was stable, we were taken to see him and the nurse in charge explained to us the care he would receive and how they were monitoring his breathing. We were advised to get some sleep at the hotel and to come back in the morning.
That was by far the worst night of our lives. Sofia was at home with her grandparents, still healthy, but we had been told at the PICU that she was likely to follow her brother as the RSV virus was very contagious. So we were in a hotel room not only fearing the worse for our little boy, but the future for our little girl too.
Over the following days the doctors and nurses at St Mary’s took amazing care of Philippe. At first he got a little worse and we were told he had contracted meningitis and needed a course of antibiotics. Just after a couple of days of treatment he started showing signs of improvement. The team at St Mary’s were also very attentive to us and they would always make time to answer our questions, give us a word of comfort or simply have a chat to distract our minds.
In the evening of 23rd December, our fears for Sofia come true. Her breathing started becoming heavier and we immediately knew we had to take her to C&W. Over the next 36 hours Sofia followed a similar pattern to her brother and she was soon intubated. It was difficult seeing our 2 babies ill and in 2 different hospitals – being 25th December we were supposed to be all together at home celebrating our first Christmas as a family. My wife and I were in pieces.
When Sofia needed to be transferred to a PICU, we were told that there was no guarantee that she would be able to move to St Mary’s with her brother as it depended on availability. We spoke to St Mary’s staff and once again they were brilliant. They did everything they could to hold a bed for Sofia to make this experience a little easier for us, and luckily that evening Sofia was transferred to St Mary’s PICU.
On 29th December, after one week in PICU, Philippe was extubated and after 3 days he was well enough to be transferred to St Mary’s paediatric ward to fully recover whilst being monitored. He was finally discharged on Saturday 5th January, exactly 2 weeks after he was transferred to PICU.
On the other hand, Sofia did not seem to be reacting well to the treatment and her condition took longer to improve. Every day we were hoping to see improvements, but her condition was only slightly getting better. She had to stay intubated for 10 days before the doctors felt comfortable with extubating her on Friday 4th January. Since her brother was being discharged the following day, the doctors decided to transfer her back to the PHDU at C&W to complete her treatment as this was our local hospital. Unfortunately, the transfer put a lot of strain on her and when she got there her condition had worsened. Although we did not want to admit to ourselves that something was wrong, we were both very worried seeing her almost in the same condition as she was 2 weeks earlier.
That night my wife spent the night with Sofia and I took Philippe home with me. But at 8am the following morning my wife called with the news that Sofia had stopped breathing and needed to be intubated again. I thought I was having a nightmare. When I got to hospital the team of doctors and nurses were already working on our little girl. The second intubation was difficult as it took three attempts before to complete it. My wife and I were struggling to make sense of it all, we thought we were almost at the end of this nightmare and here we were again back to square one with Sofia. The doctors and nurses at C&W and St Mary’s (where she was transferred to again) were very supportive and explained to us that a relapse is very rare, but can happen especially considering the strength of the virus. The team at St Mary’s really went the extra mile to ensure that Sofia had even better care (if this was possible) than before, and make sure that we were fully involved in any decision moving forward. They reassured us that they would not have discharged Sofia from the PICU until they were completely sure she was fully recovered. After 5 more days in PICU and 5 days in the Paediatric Ward, Sofia was finally back home with her mum, her dad and her twin brother.
The following month both Philippe and Sofia struggled to get back into the routine as they had gone through a very difficult time and were still recovering. But after a few weeks things started getting back to normal and 8 months after Sofia’s discharge, both of them have flourished into two healthy and happy toddlers. They are crawling everywhere and have even started trying to walk!
This has been a horrible experience for both my wife and I, but I can say that something good came out of it as we came in contact with wonderful people who dedicate their life to help sick children: all the doctors, nurses, physiotherapists and the COSMIC team at St Mary’s were fantastic and we will never be able to thank them enough. Also, we have decided to be actively involved in COSMIC as the support they provide to St Mary’s PICU is invaluable and we hope that our support can contribute to help other sick children and their families getting through very difficult times.
Through their work, Edouardo and his wife have been able to set up fundraisers in aid of COSMIC. Sophia and Philippe regularly write to the PICU staff.