One Day at GOSH
A better future for seriously ill children starts here
Great Ormond Street Hospital (GOSH) is a place where seriously ill children from across the UK come for life-saving treatments. Where the brightest minds come together to develop pioneering medical breakthroughs to treat the hundreds of children who arrive at the hospital every day.
We spent 24 hours with the patients, families, staff and volunteers at GOSH. This is what happened.
A few hours after Phoebe was born, she was diagnosed with a heart condition. Five days later, the tiny baby underwent life-saving surgery from a world-renowned heart surgeon at GOSH. After being filmed for One Day at GOSH, Phoebe’s mum, Chloe, shared their story.
“All of our pregnancy scans had been fine, so we had no indication that Phoebe had any problems. She was born at home, and a few hours later, we noticed that her breathing was fast and she was quite unsettled. She became worse in the night, and by the morning, her feet had turned purple. We went to our local hospital and they did a heart scan. It soon became obvious that something was very wrong.
“We were told then that our little baby had a life-threatening condition called truncus arteriosus and that she needed to go straight to the Cardiac Intensive Care Unit (CICU) at GOSH for open heart surgery. Phoebe was taken by the Children’s Acute Transport Service ambulance to GOSH and we followed behind. It was very hard being apart from her for the first time. She was operated on four days later – she was only five days old.
“Knowing that Phoebe was going to the best place she could possibly be and would be in such excellent hands was the only reassurance we had at that time.
“From the moment we arrived at GOSH, it was quickly evident how many people were involved with Phoebe’s care, and we were grateful that experts from all around the world were contributing their advice and knowledge to Phoebe’s condition.
“We found out that world-renowned cardiac surgeon, Mr Victor Tsang, would be doing Phoebe’s operation, which was hugely reassuring.
“Without the trust we have in the CICU team, I don’t think we’d be able to leave the unit. I carried Phoebe for nine months and it was hard being away from her. The first time I left her was when she went into the ambulance and now I have to leave her every night. But knowing that she is in such excellent hands helps.
“All the medical staff are so personable and empathetic. Everyone makes the time to ask how we are and how our son is, as well as Phoebe. It does feel like an extended family.
“In some ways, it will be sad to leave CICU, and that’s something we never thought we’d say. When you arrive at CICU, it’s so daunting. Yet, after a few weeks of being here, with the reassurance we have from the excellent team looking after Phoebe, we actually find ourselves feeling at peace when we walk through the doors. It feels so scary at first, but once you get to know the staff and see the care your child gets, it almost starts to feel like a second home.
“It’s clear that no-one treats being at GOSH as just a job. We have seen that the CICU team are passionate about helping children to get better. Every time Phoebe makes a tiny bit of progress, all the people involved in her care pop in to see her, even if they met her yesterday or eight weeks ago.
"No one just comes into this room and then goes away and forgets about Phoebe. They all cheer her on – it’s quite amazing. Everyone genuinely cares.
“The next step is for Phoebe to get strong enough to move from intensive care to Bear Ward, the hospital's ward for children with cardiac conditions. I held her for the first time a few days ago, which was a very special moment.
“It’s amazing that all the medication and treatment Phoebe has needed – and all the outstanding people involved in her care – all of it is covered by the NHS and Great Ormond Street Hospital Charity. We knew that even if we were paying for healthcare, we wouldn’t have received any better care for Phoebe. The medical equipment and facilities here are amazing and the reason that GOSH has all of that is largely down to charity funding.
“Before coming to GOSH, we didn’t realise how much it relies on the charity. That’s something that has surprised us and we plan to do our own fundraising in the future, when Phoebe is better.”
For One Day at GOSH, Consultant Plastic and Reconstructive Surgeon Mr Neil Bulstrode opened the doors of his operating theatre to offer a rare glimpse at a complex and innovative procedure – using a patient’s rib cartilage to create a new ear.
The procedure was to sculpt a new ear for nine-year-old Lolita, who has microtia – a rare congenital condition affecting one in 7,000 babies, where one or both ears are either underdeveloped or absent.
Using a combination of expert surgical and artistic skills, Mr Bulstrode and his team operated simultaneously on Lolita’s rib cage and the site of her new ear.
Watch Mr Bulstrode and his team create an ear at GOSH.
“First, we make a pocket of skin where the ear needs to go, thinning it so as to mimic the skin on the ear," says Mr Bulstrode. "Then, we harvest three pieces of cartilage from the ribs, from which the new ear will be built.
“Using Lolita’s other ear as a template, we create a framework for the new ear using the cartilage and a wire frame, before placing it under the thinned pocket of skin. As I work to sculpt her new ear, my colleague rebuilds the missing cartilage in the rib cage using thin tubes constructed from extra cartilage and a glue-like substance.”
The procedure lasts for four to five hours, and is the first part of a two-stage process to reconstruct Lolita’s ear. At the end of this first procedure, Lolita is left with the framework of her new ear attached to the side of her head beneath the skin. In May, she will undergo the second phase of the process – a further procedure to lift the new ear away from the side of the head.
Despite the procedure being purely cosmetic, it can have a significant impact on the confidence of the children involved – something Mr Bulstrode takes great pride in.
“One of the things about operating on children is that you can affect not only their health, but also their confidence and their belief in themselves," says Mr Bulstrode. "By affecting that in a positive way, you will change what they are able to achieve in their lives.
“You see patients when they’re very young, with things that can be so frightening for parents. It’s great to reassure them that there are solutions and possibilities to really make things better. You form strong relationships with the parents and strong relationships with the children, and that is really fulfilling because you see patients develop over time.
“I hope that, in part, the experience that patients have in reconstructive surgery gives them greater confidence in themselves, so that they can feel they can go on to achieve all the things that they want. That they can go on to do great things, because they’re not held back by a lack of confidence or self-consciousness.
“That’s the true value that we can add here – we can affect the whole trajectory of people’s lives. If we can change that trajectory by just a few degrees, then, over the course of a lifetime, they might end up in a much, much happier place.”
When we filmed 10-year-old Freddie for One Day at GOSH, he was getting ready to spend the night on the hospital’s Sleep Unit, where specialists could monitor his breathing for his severe sleep apnoea. Following Freddie’s stay at the hospital, his mum, Helen, told us about their experience of coming to GOSH.
“I was pregnant with Freddie and his twin sister, Mia, when we found out that Freddie had a heart condition called tetralogy of fallot (TOF),” says Helen. “We were told that he might need an operation straight away, but it turned out he was okay so we brought him home.
"But then, he wasn’t feeding or thriving very well. We came back to GOSH, and at five months old he had his first heart operation.”
Freddie’s pulmonary artery – the tube that carries blood from the heart to the lungs for oxygenation – was wider than usual. Coupled with the holes in his heart, it meant that too much blood was going to his lungs. To ease the blood flow, surgeons repaired the major holes in Freddie’s heart and placed a band on his pulmonary artery.
“It was a tough, scary and worrying time,” says Helen. “He was just a little dot then, such a tiny baby. We thought the surgery would be the answer, but he began to lose more weight, which was even scarier. When Freddie was six months old, doctors discovered he had severe sleep apnoea.”
In order to help Freddie breathe and put weight on, he was given a feeding tube up one nostril and a breathing tube up the other. “That was the most awful thing, to see our little baby having so many problems,” says Helen.
The nasal tube was causing Freddie to be sick, so doctors decided to place a tube directly into his tummy to help feed him. “He started to put on weight, which was a huge relief,” says Helen. “We were in hospital most of that first year, though, because he kept getting chest infections.”
When Freddie was one year old, the doctors removed his adenoids and tonsils to open his airway – which meant his breathing tube could be removed – and his sleep apnoea improved.
“We had a lot of support from GOSH at that point because Freddie hadn’t learned how to swallow, suck and chew,” says Helen. “It was a long, slow process. I remember the day when he ate his first chip – we were in a restaurant on holiday, and we had a celebration!”
Since then, Freddie has returned to the hospital to be monitored for his heart. Sadly, almost two years ago, his sleep apnoea became worse.
“We don’t know yet why it’s returned,” says Helen. “There’s nothing we can do to make more space in Freddie’s airways, so he has help from a machine to breathe at night, otherwise he stops breathing for periods of time.”
Freddie is still being monitored for his sleep apnoea at the hospital, and there may also come a point in the future where the band on his pulmonary artery will need to be widened to allow sufficient blood through as Freddie grows.
“GOSH has been incredibly important to us,” says Helen. “I came to the hospital when I was eight years for treatment for a heart condition. Without GOSH, neither Freddie nor I would probably be here – they’ve saved both of our lives. We got the best care in the world as far as I’m concerned.”
“The hospital has changed massively since I was a patient. Parents are encouraged to stay, and there’s room for them to do so. I was on my own as a child, which can be really daunting. I don’t remember there being play specialists, either, but that was something Freddie had when he stayed on Badger and Ladybird Wards as a baby. It meant I could get toys for him when he was in his cot.”
Despite years of procedures, check-ups and some setbacks, Freddie’s condition hasn’t held him back. “He’s a normal, energetic, amazing boy,” says Helen. “He really loves sport, and he’s good at it. He plays football, tennis, cricket, golf… he’s said he wants to be a sportsman one day. I hope that he’s happy, fulfilled, and reaches his potential, whatever that might be.”