Great Ormond Street Hospital (GOSH) mum Natalie tells us about her son Ellis’s time at the hospital  and why their whole family is taking part in this year’s RBC Race for the Kids.

At just 10 months old Ellis was transferred to GOSH for his first operation. We were sent there from our local hospital as they thought one of his testicles was twisted. He was operated on and sent home the next day as it was thought to be just an infection.

Three months later after several visits to our doctor and local hospital, we finally got referred back to GOSH. The testicle was not healing and had become very red and sore with an open wound. The growth was bigger than a golf ball.

On Wednesday 22 February 2012 we were told that he had a tumour. They did all the pre-operative tests and were keen to operate as soon as possible. The next morning we were called and asked to go straight up to the hospital. On Friday 24 they operated and removed his tumour. We came home on Saturday 25.

A week later, on the Thursday, we found out that Ellis had a yolk sac tumour. This is a rare type and it is even rarer that it should be cancerous. Ellis was very lucky that the cancer was contained in the tumour in his testicle as this type of tumour can float around the central nervous system and thankfully Ellis’s was found at stage one.

Ellis had a full body and bone scan to check that there were no other tumours. At first he had to have regular blood tests every week at home, which now he has every three months at GOSH along with a scan.

Ellis is a very happy boy and he was the same even through his treatment. As a family we do lots of different things together – bike rides, playing in the park, walking the dogs, spending as much time as possible with our friends and family enjoying every day. Ellis loves going to nursery and is very independent. We are so proud of our little man.

We wanted to take part in RBC Race for the Kids this year as we wanted to thank everyone at Great Ormond Street Hospital for everything they have ever done for Ellis and the family whilst we were there and everything they still do for him now.

As a fundraising team we have been doing boot sales with help from family and friends and fundraising at my salon where we wore our pyjamas for the day, which was so much fun! We are planning a tea party at the salon on 2 June.

We’re also doing a raffle – local businesses have been donating lunches, vouchers and gifts and lots of people will be making cakes and donating their money to help us. We’re hoping to raise a lot more money as we also have sponsor forms going around at Ellis’s nursery, our work places and even at his older brother Harvey’s karate school.

The hospital looked after us so well, we want them to keep up their good work for all the children and their families in the future.

The RBC Race for the Kids is our very own 5k family fun run. We want this year’s event to be our biggest and best yet, so sign up today and be part of something amazing! Visit the RBC Race for the Kids website to find out more.

The CATS team transports very sick children from local hospitals to the intensive care units that have the facilities and the expertise to treat them. Doctors, nurses and ambulance technicians with training in retrieval medicine use specially-adapted ambulances, small planes or helicopters to get to these seriously ill children. They then look after them on their way to intensive care.

The team, based at Great Ormond Street Hospital (GOSH), covers North Thames and East Anglia, but can be called in to deal with transport needs much further afield.

Making the call

“If a child is sick and likely to need intensive care, they will probably get sick in a hospital without an intensive care unit,” says Dr Daniel Lutman, CATS Consultant and Paediatric Anaesthesia Specialist. “The child’s clinicians recognise that the child is becoming sick and they call us. We then send out a team to the local hospital. They meet the child’s team there, get the child ready, and transfer the child in the back of the ambulance and take them into the intensive care unit. There, hopefully, they will get the best chance of survival and a good outcome.”

Fielding emergencies

Surprisingly, given the nature of their work, there’s no clamour or sense of urgency at the CATS headquarters. Rather, there’s the quietly efficient voices of the specially trained administrators who answer calls. CATS ambulances don’t constantly use their sirens and blue lights.

Emergency driving is stressful and driver response times decay quickly in an emergency situation. That’s not ideal when a journey could last for two hours. So the CATS team uses a system that aims for an appropriate time target for a journey. The blue lights go on only if it looks as if that time isn’t going to be achieved.

Teamwork

Teamwork is a vital part of the service. Teams are commonly made up of a consultant, a nurse and an ambulance technician. Yet even in such a small team, procedures and organisation are crucial.

“Everyone knows what he or she should be doing next,” says Dr Lutman. “And it’s just as important for the CATS team to be able to work with everyone else they come into contact with – specifically, the clinicians who have called them in to help and the intensive care staff who will be receiving the child.”

“I don’t turn up in a blue light, tell everyone to stand back, pull off my shirt and announce that I’m Superman!” says Dr Lutman with a smile. “We are all on the same team, and that helps a lot. It’s about trying to do what’s right for the child with the team that you’ve got, and making best use of everybody’s skills.”

Supporting the patient and their family

It’s not just medical professionals who benefit from good communication. The child’s parents will already have experienced the anxiety of seeing their child fall very ill, and watched as more and more senior people are called in to help manage that child. CATS ambulances are specially adapted to include not just room for specialist intensive care equipment, but also an extra seat for parents, who are always given the option of travelling with their child.

“A good start,” says CATS Advanced Nurse Practitioner (ANP) Mark Clement “is to let them see exactly what’s going on amid the seemingly chaotic wires and machines. Feedback from parents tells us that when the CATS team arrives, they feel this sense of calm and control. Many are relieved. It means that the child is going to get what they need. So we quickly introduce ourselves, give parents a basic plan of what we’re going to do, let them see what we’re doing and talk them through it.”

CATS Ambulance Technician and former police officer David Warren not only drives the ambulance but will happily chat to parents while the medical team are working with the child. It’s an essential part of his job. “I can’t discuss the clinical side of things. That’s not my role or my expertise,” he says. “But they ask what the CATS is about. We try to explain and give them a bit of background. We put them at ease as much as we can.”

Both Dr Lutman and Mark Clement say that the high point of their time with the service so far has been the party organised for past patients, which took place last year. “We didn’t recognise the children,” says Mark. “When we last saw them, they had tubes and lines everywhere. Now you see them in their party dresses, getting their faces painted. You forget that this little child doing cartwheels was somebody that was so unbelievably unwell,” says Dr Lutman. “Now, here they are, at a party. That’s great to see.”

Visit our blog again next month when we’ll be hearing from a family who were helped by the GOSH CATS team.

Patient Kayde-Jo tells us about her time at Great Ormond Street Hospital (GOSH) and why she’s taking part in this year’s RBC Race for the Kids.

When I was born problems with my heart, kidneys, spine, bladder and bowels were found. I was diagnosed with a congenital heart condition called Tetralogy of Fallot.

This meant that I had a hole in my heart, which was repaired at GOSH alongside other heart related problems. I had reflux of the kidney and had my right one removed at GOSH. I also have curvature of the spine along with bladder and bowel problems. My parents were told that I would not live past three but I will be 19 in November this year.

The treatment and care I received at the hospital was amazing. The staff made what could be such a scary experience a bearable one. I have a very bad needle phobia but the staff were always patient with me. I could not fault the hospital at all.

I want to take part in the RBC Race for the Kids so that more children can get the expert care they need. I feel that it is something that I can do to give back to the hospital after everything they have done for me.

I have put posters at my work and college in order to fundraise. I have also informed my friends and family so they’ll donate if they can. I am also planning to do a sponsored silence and other fundraising events to raise more money. I have also been going to the gym.

Although my health problems will always be an ongoing thing I am doing alright. In my spare time I spend time with my friends and my family. I also like to read. I spent some of my spare time getting a tattoo of the Great Ormond Street Hospital Charity logo on my wrist. Great Ormond Street Hospital is so special to me and my family.

The RBC Race for the Kids is GOSH’s very own 5k family fun run. We want this year’s event to be our biggest and best yet, so sign up today and be part of something amazing! Visit the RBC Race for the Kids website to find out more.

When I went to the Moshi Monsters HQ I had a very good time because we went on a gingerbread slide. I loved it. It was fantastic. I liked making the mini-moshi monsters do a hand stand on the computer. I loved my goody bag. 
Thank you
Luke, age 6

His older sister Jenna, also wrote us a note telling us about her day:

I had a really fun time at the moshi Monster HQ. I think it was the best place that I have been to in my entire life. My favourite part was when we went down the slide in the gingerbread house. When we went down the slide my brother went round the corner and he went over the top. And we also went into the microphone room and we all screamed apart from me because I was too shy. Then we went to Mr. Moshi’s desk, he had so many Moshis on his desk that I just wanted to take them all home.
Thank you so much for letting us come.
Jenna

Over £100,000 raised for the charity

Moshi Monsters have been fundraising for Great Ormond Street Hospital Children’s Charity since November 2012, when they launched a limited edition GOSHI Moshi tin. Three pounds from the sale of each tin supports the building of the hospital’s British Kidney Patient Association Children’s Kidney Centre.

Moshi Monster Poppet was on hand for a special cheque presentation, when Vivid Imaginations and Mind Candy presented the charity with a donation of £104,730 from the sale of the limited edition tin.

Justine Trumper from Great Ormond Street Hospital Children’s Charity said: “We’re thrilled that the GOSHI Moshi tin has been such a huge success. All the money raised will make a real difference to the very ill children with kidney conditions who are treated at the hospital.”

Read about when Moshi Monsters visited Great Ormond Street Hospital and find out more about how Moshi Monsters are supporting the charity.

The group trekked from Lukla to Namche Bazaar in Nepal, where they underwent a range of rigorous tests at an altitude of 3,500 metres. The children, aged 8 to 16, had previously been assessed at the London Clinic to gather baseline data on their normal physiology.

Dr Mark Peters, Intensive Care Consultant at Great Ormond Street Hospital, led the children’s expedition and explained what they hoped to achieve: “The testing we are doing is a world first, because at high altitude we can isolate the effect of low oxygen on otherwise healthy children. We want to describe the physiology of kids who do well at low oxygen levels, to then apply that knowledge to treat patients in intensive care.”

One of the children taking part was nine-year-old Jack, a former patient at GOSH. His father, Dr Lee Elliot Major, accompanied him. Lee explains why they got involved: “There is a personal connection for us. Ten years ago Jack was born with a condition that blocked his bowel. Thanks to the doctors at GOSH, he had a successful operation, lived to tell the tale, and is now a healthy young boy. Since then I have kept in touch with the charity – and serve on the research advisory panel representing parents and past patients.”

“This was a once-in-a-lifetime trip – getting to see the world’s highest mountain, but also contributing to a really exciting medical study that has the potential to help other children in intensive care in GOSH and other hospitals. And it was the first time Jack and I had travelled together alone.”

The trip wasn’t all plain sailing: “I did find myself slightly out of breath as we reached the highest points of our trek. Life becomes very basic – no heating, no clean water, no electricity, so after eight days I was ready for a proper hotel room and shower! Jack was sick at the highest altitudes, but seemed absolutely fine when he wasn’t vomiting. At times I was concerned that he may get weak, and it was a long walk back at that point! But he didn’t complain once.”

Mark Peters explains the questions they hope the trip will answer: “Research with these children will address questions like: Is oxygen extracted more efficiently at altitude by the muscles? Does the muscle ‘learn’ and alter molecular pathways to become more efficient? We know that tissue dies when it doesn’t get enough oxygen, but we also know that too much oxygen can be damaging, so we hope our findings will help us to optimise the delivery of oxygen to patients in a critical condition.”

Lee expands on this: “Jack had to undergo three hours of various tests – checking heart rate, blood flow and various other things. All are needed for the medical study to find out how children adapt to low levels of oxygen – which may give some clues on how to better manage the use of oxygen in intensive care units for critically ill children.”

On their return Lee added: “We had an amazing time – Jack turned around to me one morning and said, “Dad, this is not so much a holiday as an adventure” and that sums it up. It will stay in our memories for the rest of our lives.”

Find out more about groundbreaking research carried out at the UCL ICH and Great Ormond Street Hospital and how you can help support it through our ‘Bringing research to life’ campaign.

I have wanted to raise money for Great Ormond Street Hospital Children’s Charity because the hospital gave my daughter Katherine her sight. She was found to have bilateral cataracts which meant she could not distinguish between day and night.

Isabelle Russell-Eggitt and the team operated on her at 11 weeks old. In the subsequent months Katherine received a lot of visual stimulation,  then excellent follow-up as an ophthalmic outpatient for 14 years. Together with the expertise of her contact lens clinic, this meant she developed, with suitable correction, good eyesight. She’s now coming to the end of a successful time at school, and is poised to go to university.

I first began running about ten years ago when I was working in Copenhagen. A colleague encouraged many of us in the office to make up teams for the annual DHL relay race, which is the largest fun run in the world. I was in my late forties and really unfit. It was a struggle to train and make the distance – mind you it still is 10 years later.

I then ran the Brussels 20k and since returning to live in the UK have run in several half marathons. In 2009 I stepped up to the London Marathon for the first time and raised money for the British Heart Foundation.

Ever since then, I have wanted to run it again and raise money for Great Ormond Street Hospital Children’s Charity. Every year I was unsuccessful in both the main ballot and the charity ballot. But to my surprise, the charity team called just before Christmas and asked if I would like to take over from somebody who had dropped out.

Surprise and consternation ensued. Only four months to go. The excessive consumption of Christmas and New Year was approaching with the scales already groaning at 115kg. Still, it gave me a reason to get fit, and the charity is a great cause, so I said yes. I remembered all the advice from the BHF team 4 years ago, and still had my old training logs, so off I started.

I am lucky to have the beautiful North Downs to run on. Consuming less food was a very tough discipline (with frequent lapses), but the benefits are there to see with the 100kg mark in sight now. My left ankle has been a problem from the start so I have mixed up running with cycling. The weather has been tough, but if you can’t face training in bitter winds and snow, and running in ankle deep mud, how will you ever get round 42km?

Amazingly I found myself running three or four half marathons a week and not being overstressed. Still I know that I will struggle to run past 20 miles and the route back from Canary Wharf will be an immense challenge. This is when the spectators drag you along. The vocal support is inspirational.

David completed the marathon yesterday, with his family cheering him on. David has pledged to raise an impressive £3,000. Support David and donate by visiting his JustGiving page. Thank you David, for supporting the charity and running the marathon.

Five-year-old Mia was born with a rare abdominal wall defect called exomphalos. Her mum, Amy, talks about the first months of her life, which were spent at Great Ormond Street Hospital (GOSH) undergoing life-saving surgeries.

I knew something was wrong when I was having my 12-week pregnancy scan. It was taking ages and the sonographer wasn’t saying anything. They told us our baby’s liver, intestines, and stomach were developing in a sack outside her body.

At home I googled “exomphalos”. Everything I found was so negative and hopeless. Luckily I found an online support group, which gave me some hope.

I wanted as normal a pregnancy as possible but everything was tainted with anxiety and fear. I must have had at least 10 scans. Each time the sonographer was focused on her defect but all I wanted was to see was our baby’s face. They never asked if we wanted to keep a photo. But each time I requested one and I’ve kept them all.

Feeling at home

A friend suggested I contact Great Ormond Street Hospital because it had such a good reputation. When I visited the hospital for the first time, seven months pregnant, I walked into the cafe and the lady behind the till started waving and shouting ‘Good morning’. I looked behind me thinking there must be someone she knew. But she was waving at me.

She probably has no idea what impact that had on me. I immediately felt at home. The family was the patient, not just the child. People had time for us and Mia was going to be their priority. Our surgeon, Mr Curry, always seemed so calm, which was reassuring at such an anxious time for us.

Mia’s arrival

Mia was born by c-section at University College Hospital (UCH). They immediately wrapped her in medical cling film and gave her to my husband, Paul, to hold. We never imagined it would be possible to hold her. When she screamed it was such a relief. It was amazing.

I was worried that I might focus on Mia’s defect. But actually all I could see was her face, her beauty. That night I stayed in UCH and Mia was transferred to GOSH to have her first operation, to put a protective silo over the organs outside her body. Two days later I was discharged and after that I never left her side. I didn’t get to hold Mia until she was three weeks old. But when I did the feeling was indescribable.

Mia needed a series of operations to tighten the silo and gradually move her liver, intestines, and stomach inside her abdomen. I was scared witless each time. My mum (or my sister) and I spent Mia’s first five weeks in the parent accommodation at GOSH, which meant you could almost be like a normal parent, close by. Mia was then moved to a private room, which meant I could be with her night and day.

Her first outing

Mia had her first outing when she was nearly three months old. I bundled her up and we went to Baby Gap. It’ll sound completely trivial to most people but it meant the world to us. A year before we’d been told our baby might not make it. But here we were doing something completely normal.

Mia left GOSH after three months. It was Christmas so the first thing we did was decorate the tree, together as a family. It was like bringing a newborn home. I was overwhelmed with this leap forward.

She’s now five years old. By the time she was one she’d had 10 operations to correct her birth defect. She is so resilient after everything she’s been through. She has a future because of the amazing care she received. She can do whatever she wants with her life. She’s skipping around, riding her bike and she’s so happy.

Mia doesn’t have a belly button and, right now, it doesn’t seem to matter to her. Her favourite swim suit is a bikini. She’s confident. I heard one of her friends asking her why she doesn’t have one. Mia said, ‘It’s because I’m special.’ It was the perfect answer.

Discover more stories from patients and parents at Great Ormond Street Hospital on our blog.

So it is crunch time, and I need to make a decision. There are several influencing factors, and these are (though not necessarily in this order):

1. My ankle, probably the most important influencing factor. It’s still not right and we all knew it wouldn’t be. I worry about whether it’s okay enough – will I do myself some long term damage? In reality I have had to change my mindset about what I want to achieve and any dreams of a cracking time are well out of the window. Now it is all about enjoying the day for what it is – a momentous occasion, and the result of lots and lots of hard work for thousands of people.

2. My physio, Simon is fantastic and a great facilitator. He runs and understands what we have all been through to get to this point. He doesn’t just work on the physical problem, but really gets the psychology behind it, and each session without question has this element. Without him I would have given up weeks ago.

3. Brighton Marathon. I spent Sunday supporting our fantastic team at Brighton. Usually in my mind’s eye I have myself positioned in the middle of the field, but this time I felt so inspired by all those at the back, those for whom this was a huge challenge, injured, tired, and persevering - that’s the part of the field I will be in, and if they can do it so can I!

4. Boston Marathon. The events of Monday were horrific, and my thoughts are with all those effected. Us Londoners live in a city that has over the years experienced a number of attacks, and with that it seems to me that the “Blitz” spirit hasn’t died, and for me I will be running in defiance of such attacks, and in honour of those people who were injured or killed in Boston.

So it seems that I have made my decision. When I cross that finish line (which I am determined to do), I shall have my hand on my heart for those in Boston, and for everyone who will benefit from the money I have raised.

I wish you all the very best of luck, I look forward to seeing you as we nervously congregate at the start, along the route as we spur each other on, and at the end where for the first time in months we can finally kick our shoes off, and celebrate.

Good luck everyone!

Laura

p.s. A cheeky ask (I am after all a fundraiser, and you’d be disappointed if I didn’t ask), if you would like to sponsor me please do by visiting my JustGiving page.

Earlier this month, a group of Great Ormond Street Hospital patients spent a day training with members of the Saracens rugby team in the run up to the RBC Race for the Kids, our 5k family fun run. Hayden and his brother Charlie took part and wrote us a blog about the day.

On Tuesday 2 April me and Charlie (my little bro who is a Great Ormond Street Hospital patient) and some other GOSH reps called Jacob, Ben, Buster and Joe went out for the day of our lives, to train with the Saracens rugby team at their training ground in St. Albans.

At first we got some RBC Race for the Kids T-shirts and then we went with some of the players to take part in some games. We did some tactics then we played a match. I scored the opening try and made my trousers very dirty.

We then had some lunch and while we were in the canteen we got some autographs from John Smith, Owen Farrell, Chris Ashton and Joel Tompkins. We then went out to do some passing.

Alex Goode said I was very good and called Owen Farrell over to watch me. While I was there I got Alex Goode’s autograph I then got interviewed by Channel 5 news. It was excellent.

We are preparing for the RBC Race for the Kids in June. Me and my brother are practicing running because five kilometres is a long way, so we need to train.

We chose to do the RBC Race for Kids so that we had something else to be proud of.

By Hayden, age 9

Hayden and Charlie are taking part in this year’s RBC Race for the Kids, a 5k family fun run taking place in Battersea Park on 9 June 2013 and have already been fundraising with a bake sale. Find out lots more about the event and how you can be part of it on our website.