The first place in the world that could change the future for babies like Billy

written by Helena Vesty, NHS, social care and patients reporter for the Manchester Evening News

Looming towers, dark red brick punctuated with black window frames, Gothic spires. An imposing Victorian stalwart that has dominated this northern city centre street since 1869.

It’s enough to make the most regular hospital visitor shift nervously in their shoes. Yet, for most of those people, they walk through the wood-panelled doors with a pit in their stomachs more vast than their surroundings could ever confer.

They are the parents and loved ones of fragile newborns in their first day of life, some extremely premature; weeks-old little ones struggling to cling on in the midst of complex heart conditions; babies who have battled terrifying odds for months.

But this is the only place in the whole world that uses a certain method of testing that can change the future of these little ones, and give doctors and parents crucial information they need to save these babies.

Here at Leeds Children’s Hospital, consultant in paediatric cardiology Dr Malenka Bissell and her team have found a way of giving MRI scans to these most high risk babies, without any sedation or contrast agents, substances that help blood vessels ‘light up’ on the results.

They use a baby MRI incubator, a pioneering advancement that allows babies too fragile to undergo regular MRI and CT scans to be imaged. The baby is wrapped in a thin blanket with cameras built in and placed into the warm incubator, which is then sent through an MRI machine.

Other countries, including in the United States and areas of Scandinavia, do MRI scan babies with the incubator. But Dr Bissell’s team is unique in the world in giving babies these scans while the baby sleeps naturally.

“I was very interested in the sickest of babies, our high risk programme. I was looking for ways of how to reduce their risk of dying,” Dr Bissell told the Manchester Evening News.

 

“We had some babies that couldn’t actually go through the MRI scanner [if we used general anaesthetic] because they were so sick that, once they had gone to sleep, they weren’t stable enough to have the MRI scan.

Dr Malenka Bissell (Image: Sean Hansford | Manchester Evening News)

“I was very keen to find options of how we could image them while awake, because they do it for the brain. I decided that it must be possible to do it without contrast and without giving any sedation for the heart.

 

“In the world, we are now the only centre that does that routinely without contrast and sedation. We’re doing a version that is completely hands off and as natural as possible.

 

“We’ve now given MRIs to over 100 babies. What we find is that the MRI can alert us to problems, probably about one or two weeks before we see any changes on the ultrasound scans.

 

“It really helps me to understand where the blood flows, how quickly the blood flows, how much it goes where.

 

“It really helps to tailor medical treatment, and more detailed surgical planning. More importantly, I can predict any problems that may arise, so I’m in a much better position to tell my intervention team when they go and have their catheter – wires put into the babies hearts – if they’re going to encounter any problems, and if we need to consider any procedures as part of that.

 

“As soon as the baby is born, we can scan. There are quite a few babies that we have scanned on day one of life to help with our decision making.”

A model baby shows how the baby is wrapped in a blanket, which has cameras inside, and placed in a warming incubator (Image: Sean Hansford | Manchester Evening News)

Thanks to the numbers provided by the MRI, for some babies, Dr Bissell could prove their hearts were strong enough to support life-changing surgeries.

“The difference is having a near normal life expectancy versus living to 20 at most,” she said. “Those are the kind of decisions that we have been able to make.”

Firstly, Dr Bissell worked with MRI manufacturer Siemens to cut down the length of a scan from almost two hours to just half an hour. Then she used years of expertise – both as a doctor and as a mother herself – to curate an experience for parents and babies that encourages babies to fall asleep naturally.

By connecting with and understanding her patients and their families, she honed a routine. Parents feed their babies when they arrive for the appointment to make them sleepy, wrap them up cosily, and wheel them up and down the corridor.

Then comes music, played at a loud level to match the noise of the MRI machine. The doctor has learned that it’s not the volume that keeps the babies awake, but the stop-start of the machine that disturbs them.

Often, Dr Bissell plays her ‘magic CD’, filled with her native German lullabies. She joked that she’s never known a baby who didn’t ease off into a lovely slumber to this music – apart from her own daughter.

Sometimes, she also plays Disney music or, for families of Muslim faith, the Quran, whatever will make them feel most at rest.

Once the babies are nearly asleep, the babies get noise-cancelling headphones and are go into the MRI room, where the lights are dimmed. And the scan goes ahead.

Dr Bissell can view the results as the baby is being scanned in the MRI machines (Image: Sean Hansford | Manchester Evening News)

Advances like this are vital for families like the Silvers. When they were expecting their first child, mum Charlotte and dad Joe thought the pregnancy was going just fine.

But, ‘as soon as he was born, it was obvious there was a problem’, Charlotte told the M.E.N. These new parents could never have imagined that their little boy, Billy, would arrive five-and-a-half weeks early in October 2023, in an emergency C-section, with an undiagnosed heart condition.

Billy was born with pulmonary atresia with intact ventricular septum, a rare and critical congenital heart defect. In the womb, Billy’s pulmonary artery didn’t open, so there was no blood flow to the bottom right ventricle of his heart. “It was like doing a constant bicep curl, but nothing moving through it,” Charlotte shared.

“He built up a lot of muscle, so it was extremely small.”

Billy arrived five-and-a-half weeks early in October 2023, in an emergency C-section, with an undiagnosed heart condition.

Billy was born at a general hospital close to their Harrogate home, needing an urgent transfer to a specialist hospital equipped to deal with his complex condition.

“He was emergency transferred, luckily, to Leeds which is down the road from us,” said Charlotte.

Billy was meant to be three-and-a-half kilos before his first open heart surgery, but everything changed when he went into cardiac arrest. When he had the operation in an emergency, ‘he wasn’t even two-and-a-half kilos’.

The first operation had to perforate the pulmonary artery to try and get the blood flowing,” shared Charlotte. In another heartbreaking turn, it failed.

“We didn’t know if he was going to die or not,” added Billy’s dad. “If this was the only chance we’re going to have to care for him, then we had to do it – it wasn’t giving him milk, or giving him a bath, wrapping him up, and sending him to bed like it normally is – it was changing a tube.

 

“But if that’s the only thing we could do because he might be dead this time next week, then that’s what we’d do.”

Billy was born with pulmonary atresia with intact ventricular septum, a rare and critical congenital heart defect.

Billy defied the odds. Three months later, he was finally able to go home for the first time, in January 2024. A few months after, he was asked to come back for more tests.

Billy had always been examined using echocardiograms, known as ‘echos’ – ultrasound tests are routinely used to look at the heart’s structure, pumping function, and valve health.

But they have drawbacks, especially for a ‘prodded and poked’ little baby, ‘having a blood test every day and wires coming out of him’.

“There were a lot of times we’d come out of an echo, and Malenka would say ‘we didn’t really manage to get a good view of X, Y, and Z’ – either because he was unsettled or other reasons,” said Joe.

Parents, Charlotte and Joe Silver, were determined to make sure they could give Billy the best care possible when he went home from hospital, learning as much as they could from long stints on wards (Image: Sean Hansford | Manchester Evening News)

But when he was invited back, Dr Bissell wanted to try doing an MRI – as one of the first patients to go through the process she was trying to craft. Still early in creating a routine that would work for most babies, Billy struggled to settle.

So the family and the doctor decided to get Billy to sleep during the scan by letting mum Charlotte go in the machine while breastfeeding the baby.

Unconventional perhaps, but Dr Bissell said Billy’s MRI gave results that could change the course of his treatment, and ultimately his life.

“We’ve had quite a few babies, like Billy, where the MRI actually showed us that the heart is more capable than what we were predicting in ultrasounds,” she explained. “In Billy’s case, he had a good left heart, but there was always a question about whether the right heart would be able to do anything.

 

“Because of the MRI, we were able to actually design a bespoke surgery for him, rather than the standard surgery, so that we are still making use of that right heart.

 

“Actually, we have seen some growth of that right heart over time showing us that the MRI was right, and it was right to say that actually it can cope with more than the ultrasound was showing us.”

Billy (Image: Sean Hansford | Manchester Evening News)

The MRI results also allay the fears of parents like Charlotte and Joe.

“Parents really struggle with the uncertainty in the high risk programme,” Dr Bissell added.

 

“With the MRI, we can provide more certainty and that is really important for parents, even if there are problems. And because we’re so hands-off, we can also repeat the MRI.”

Doctors can check medical care has worked. Or, if a child has such poor heart function they couldn’t have surgery at first, they can be regularly monitored.

Dr Bissell is now working with hospitals globally to teach her method – including sharing her ‘magic CD’. But this style of treatment still only exists in Leeds – and the incubator here had to be funded by the charity, Heart Research UK, alongside the Children’s Heart Surgery Fund which has a base at Leeds General, and other groups.

The Silvers say they were ‘extremely blessed’ that Billy managed to get a bed in Leeds, only 40 minutes away from home, but it should at least be available at major cardiac centres across the country for every family like theirs. While Dr Bissell is hoping that the incubators will be funded more widely through the NHS, in light of her promising results.

“We were one of the first families to use the MRI, and that imagery helped Malenka push things forward for the incubator,” said Charlotte.

 

“Malenka is the reason that Billy’s surgery has been directed in the way that it has, it was her plan. We couldn’t be more grateful for that.

 

“And if [the MRI] helped her get to the conclusion that ultimately helped Billy, and more families can benefit from that, that’s amazing.”

Billy playing with a toy version of the MRI machine (Image: Sean Hansford | Manchester Evening News)

Billy’s first years have been unimaginable, but thanks to his care – shaped by Dr Bissell’s groundbreaking work and the unwavering dedication of his parents – rays of sunshine are breaking through the clouds.

Billy’s last scan shows ‘his heart was looking better than they ever could have hoped for really’, shared Charlotte. Unless you looked at his scar, his parents told, you might never know he had a heart condition.

“For me, the biggest reward is seeing children like Billy doing so well, living normal lives, despite their really quite severe heart condition,” added Dr Bissell.

Instead of wires surrounding the now two-and-a-half-year-old Billy, he’s racing around with Bluey, Peppa Pig, and the Potato Heads.

“Billy’s excelling – he’s walking now, his speech is amazing, he is just enjoying life. So when he does, you’ve got to let yourself go with it,” Charlotte sighed, looking proudly on at her son.

 

“He’s an absolute legend. There’s only one Billy Silver.”