Childrens Health

CCHS Awareness: ‘My Baby Risks Dying Every Time he Falls Asleep’

Bedtime with both a toddler and a baby in the house is always hectic, but for the Oakley Roberts family, it’s also a matter of life or death.

Stephanie Roberts and her husband, James Oakley are parents to two little boys – three-year-old Max and 16-month-old Casper.

While Max may need a bit of cuddling and encouragement to drift to sleep each night, it’s Casper who requires constant supervision.

Without it, he could die.

Casper has an ultra-rare condition where his little body forgets to breathe. This is known as CCHS (congenital central hypoventilation syndrome).

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Casper with his mum, dad and big brother. Source: Instagram

Now his loving parents are sharing his story and tirelessly raising funds to build their son – and others with CCHS – a breathing pacemaker – the first of its kind.

‘We expected to take him home the next morning’ 

As Stephanie shares with The Mirror, when Casper was born, they assumed they would be able to take him home nearly straight away. They had toddler Max at home and were eager to settle into a family of four.

“In reality, it would be almost 10 months before that day came,” Stephanie shares.

As they prepared to leave, the nurses noticed Casper was a little cold as they did their routine checks.

Then one of them said suddenly, “He doesn’t look right,” and we could see he wasn’t breathing the way he should and was floppy.

Casper had been intubated and they believed he was in respiratory distress – in fact, he wasn’t breathing at all.”

The newborn was transferred to intensive care in London where he was diagnosed with meningitis which, they said had caused brain damage. However, this didn’t quite explain why Caspar wasn’t breathing and this diagnosis turned out to be incorrect.

Two diagnoses in one day

Casper remained in the hospital on constant watch while Stephanie and James took turns going from their home in Brighton to London to be with their newborn.

CCHS awareness - Casper's story
Casper has spent several months in hospital. Source: Instagram

About one month after Casper’s admittance, they discovered that Casper had numerous tumours running through his body.

James and I were taken into a room to be told that Casper had neuroblastoma, a form of cancer, and that coincidentally the results of genetic testing had also come back, confirming something called congenital central hypoventilation syndrome.”

As heartbroken as the parents were, they also now had a diagnosis – or two – and knew what they were fighting.

Neuroblastoma is the most common cancer in infants where cancer grows in the cells of the body’s nerves, and comes from a type of cell called a neuroblast.

Congenital central hypoventilation syndrome or CCHS is incredibly rare. As few as 1,500 people have it worldwide. People with this disorder take shallow breaths (hypoventilate), especially during sleep, resulting in a shortage of oxygen and a buildup of carbon dioxide in the blood.

For Casper, this means that when he sleeps he does not breathe and therefore requires mechanical ventilation.

‘Not relaxed for one second’ 

Caspar underwent treatment for neuroblastoma, and, thankfully, a recent scan showed his tumours are inactive.

At ten months old, this little fighter was finally able to go home with his family.

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The bravest little fighter, Casper has overcome neuroblastoma and now lives with CCHS. Source: Instagram

However, with Casper came a heavy ventilator, breathing mask and oxygen monitor that he must wear anytime he is asleep. Every night a nurse comes over to watch him closely.

Without this help, falling asleep could kill him.

“James and I will sit down to eat together when Casper’s nurse arrives in the evening but we have truly not relaxed for one second since he was born in December 2021.

Even at the dinner table, we have our eyes on his video monitor, double checking his mask is in place and everything is OK.”

Despite everything, Casper is the happiest, loveliest boy. He is fed through a ‘peg’ in his stomach but he continues to develop. He is now pulling himself up which is exciting but also terrifying as it brings a whole new set of risks.

Casper is surrounded by love and adores his big brother. However, every day is a struggle filled with fear, especially at night.

Keep me breathing 

As mentioned, CCHS is incredibly rare. Not much research had been done into treatment because there weren’t enough patients with this rare condition to make it commercially viable.

There is a solution, however, one that would ‘remind’ Casper’s body what it needs to do at night. This is something called a “breathing pacemaker”.

The problem is, this medical device doesn’t exist. The design is there but there isn’t the funding to bring this life-saving device to fruition.

As heartbreaking as it was to know that the only reason our child couldn’t get appropriate treatment was due to money, it was also positive news – it showed us there was a solution to Casper’s problem.

Someone, somewhere needed to fund it, develop it and also commit to overseeing the whole project.

James and I looked at each other and knew there and then it had to be us. Who else was going to do it? It could be Casper’s only chance.

That’s how our charity, Keep Me Breathing, was born.”

Stephanie and James immediately set to work and are currently raising funds to build their son’s breathing pacemaker.

An amazing research team at the University of Cambridge’s Consulting Network is working on the development of an advanced diaphragm pacer.

For Casper, this medical device would be a life changer. And not just for Casper, but for anyone who has CCHS.

There would be no need to take heavy ventilators everywhere or feel terrified he’ll doze off in his car seat – he could play with friends, have a normal school life and sleep through the night free from danger.”

100% of donations to Keep Me Breathing go directly towards discovering and developing treatments and cures for CCHS sufferers. The charity supports several children with CCHS, all of whom need constant supervision and are in danger anytime they fall asleep.

You can learn more and donate to this cause here and follow their journey through Instagram.

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Avatar of Jenna Galley

Born and raised in Canada, Jenna now lives in Far North Queensland with her tribe. When the mum-of-three is not writing, you can find her floating in the pool, watching princess movies, frolicking on the beach, bouncing her baby to sleep or nagging her older kids to put on their pants.

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