The boy who stops breathing when he’s asleep

HE'S the little boy who stops breathing when he falls asleep.

Twenty-one-month-old Archer Howe looks like any other toddler as he plays with his toy cars and dances joyously around the house to music on his Dad's mobile phone.

But the tube in his neck is impossible to ignore.

As a tiny baby, doctors were left with little choice when blood tests confirmed he had congenital central hypoventilation syndrome, a genetic condition so rare doctors estimate there's fewer than 2000 cases worldwide.

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Surgeons at the Queensland Children's Hospital performed a tracheostomy - inserting a tube into his windpipe - which allows him to be attached to a ventilator to breathe for him while he sleeps. He's expected to depend on a breathing machine to survive for the rest of his life.

Archer Howe has a condition which means he stops breathing when he's asleep. He needs to be attached to a ventilator while sleeping. Picture: Adam Head
Archer Howe has a condition which means he stops breathing when he's asleep. He needs to be attached to a ventilator while sleeping. Picture: Adam Head

Although he can breathe by himself when he's awake, he stops within minutes of nodding off.

After a "fantastic pregnancy", Archer's Mum Summer Wallbank was looking forward to taking him home to the nursery she and her partner of five years, Tom Howe, had lovingly prepared for him in the house they rented at Marcus Beach, on the Sunshine Coast. He never got to see it.

Archer stopped breathing for the first time within seconds of being placed on his mother's chest soon after he was born on December 17, 2017.

"He was wriggling and then he just went limp," Ms Wallbank recalls. "He looked a bit blue. I said: 'Is he OK? I think there's something wrong'."

Her tiny son had to be resuscitated three times before leaving the birthing suite at the Sunshine Coast University Hospital.

At that stage, doctors suspected Archer may have hypoxic ischaemic encephalopathy, swelling of the brain caused by him being starved of oxygen during birth.

"They handed me a piece of paper and the first two lines on it read: 'HIE has a 50 per cent survival rate. Those that do survive will be severely brain damaged'," Ms Wallbank said. "That was pretty traumatic. I couldn't read anymore."

 

Archer Howe, 21 months, with his parents, Tom Howe, and Summer Wallbank. Archer has congenital central hypoventilation syndrome, which means he stops breathing when he's asleep. Picture: Adam Head
Archer Howe, 21 months, with his parents, Tom Howe, and Summer Wallbank. Archer has congenital central hypoventilation syndrome, which means he stops breathing when he's asleep. Picture: Adam Head

Around midnight, when Archer was less than 10 hours old, he was flown by emergency helicopter to Brisbane. His parents had to stay behind. There was no room on the flight for either of them to be with their baby.

They were unable to even cuddle their newborn goodbye. Archer was heavily sedated and wrapped up "like a baby burrito" in a cooling mat - therapeutic hypothermia is used to try and reduce brain swelling in babies with HIE.

His mother would have to wait a fortnight before she was able to take her baby in her arms again in the neonatal intensive care unit at the Mater Mothers' Hospital. By then, brain scans had ruled out HIE as a diagnosis and Archer's first-time parents were anxiously awaiting the results of genetic blood testing in Western Australia.

Just being able to hold her son, who was attached to machines and surrounded by tubes and lines, was an effort.

 

Archer Howe has a condition which means he stops breathing when he's asleep, pictured with his Dad, Tom Howe.
Archer Howe has a condition which means he stops breathing when he's asleep, pictured with his Dad, Tom Howe.

"They needed two people to lift him and place him into my arms and then I was too scared to move," Ms Wallbank recalls. "They had to tape stuff to me so that none of his tubes would move and of course, Archer had hardly been touched. He was really shaking, he was pretty distressed to start with. I was so scared about hurting him because he always looked like he was in pain and he was always trying to pull his cords out."

Archer was still barely a month old when his parents were told he had congenital central hypoventilation syndrome, or CCHS, as a result of being born with a mutation in the PHOX2B gene.

His respiratory physician Jasneek Chawla, of the Queensland Children's Hospital, said Archer was born with problems affecting his autonomic nervous system, responsible for bodily functions that occur without conscious effort, such as breathing and adapting his body temperature.

"Decades ago, these children may have been a case of sudden infant death syndrome or died shortly after birth, with no understanding of exactly what happened," Dr Chawla said. "They are among the most complex and complicated children we look after.

"Summer and Tom have done an amazing job. They have adapted to one of the worst situations you can face … with a new baby. It's a very unusual condition. It's really difficult to get your head around it."

 

Archer Howe has a rare genetic condition, known as congential central hypoventilation syndrome, which means he stops breathing when he's asleep. He needs to be attached to a ventilator while sleeping. Pictured with his Dad Tom Howe and Mum, Summer Wallbank. Picture: Adam Head.
Archer Howe has a rare genetic condition, known as congential central hypoventilation syndrome, which means he stops breathing when he's asleep. He needs to be attached to a ventilator while sleeping. Pictured with his Dad Tom Howe and Mum, Summer Wallbank. Picture: Adam Head.

Worse than the diagnosis for Archer's parents, was news that he would need to spend up to 12 months in hospital and after discharge, they would be unable to take him home to the Sunshine Coast to live. The tube in his throat also means their dreams of having a beach baby, who loves the ocean as they do, have been shattered.

Ms Wallbank sobs as she talks about having to live so far away from friends and family.

"We got the diagnosis and you kind of go: 'OK, we'll manage'," she said. "But being told that we wouldn't be able to take him home to the Sunshine Coast to live, was pretty heartbreaking. That was traumatic.

"We were told he can't go near water, he can't swim with the trachy. We had always imagined our little surfer baby, learning to swim really young and taking him to the beach with us, being able to throw him in the water and jump in the pool with his cousins."

After Archer was discharged at 10 months old, he became part of the Queensland Children's Hospital home ventilation program, which requires families to live within a 40km radius.

Nurse navigator Nicole Bofinger said the program cared for about 20 children, requiring home ventilation for a variety of reasons. Carers are trained to look after Archer at night, allowing his parents to sleep.

Archer also spends two days a week with carers at daycare, giving Ms Wallbank time to go shopping and to attend medical and other appointments.

"They're the eyes and ears so his parents can sleep," Ms Bofinger said. "This assists and supports them to maintain a regular family life as much as possible."

For now, Ms Wallbank stays with Archer, in a rental house in southeast Brisbane, while Mr Howe, a carpenter, commutes between Brisbane and his parents' home in Noosa, to keep working.

 

Archer Howe with his Mum Summer Wallbank in the rental property they share in Brisbane. Twenty-one-month-old Archer is part of the Queensland Children’s Hospital home ventilation program. Picture: Adam Head
Archer Howe with his Mum Summer Wallbank in the rental property they share in Brisbane. Twenty-one-month-old Archer is part of the Queensland Children’s Hospital home ventilation program. Picture: Adam Head

Soon after Archer's discharge from hospital last year, on a rare four-day trip to the Sunshine Coast - thanks to the generosity of carers - Mr Howe proposed to his partner in one of their favourite places, Noosa National Park.

With Archer now stable, they are hopeful of being able to live together on the Sunshine Coast again one day. But at the moment they are taking everything one day at a time.

"When Arch was born, I thought about all the things he couldn't do," Ms Wallbank said. "He won't be able to go to sleepovers, school camps, all those kinds of things.

"The social workers at the hospital have said you can't think that far down the track. Just take each day as it comes. Who knows what technology's going to be around in the future?"

Although the couple was warned to expect Archer to be developmentally delayed, he's bright and inquisitive. Among his toys is a Peppa Pig with a tube in her throat, just like Archer. His parents are using the toy to help them talk to him about his tracheostomy.

 

Archer Howe has a condition which means he stops breathing when he's asleep. The 21-month-old is pictured with his Peppa Pig toy. Archer’s parents is using Peppa, who also has a tube in her throat, to talk to him about his tracheostomy. Picture: Adam Head
Archer Howe has a condition which means he stops breathing when he's asleep. The 21-month-old is pictured with his Peppa Pig toy. Archer’s parents is using Peppa, who also has a tube in her throat, to talk to him about his tracheostomy. Picture: Adam Head

"He's starting to notice now he's at daycare that other kids don't have one," Ms Wallbank said. "You don't see kids everywhere with a trachy. He's going to start asking questions about why does he have it and no-one else does. That's when it will get hard."

Eventually, when he's about six or seven years old, they hope the tracheostomy will be able to be closed and he can use a mask attached to the ventilator when he's sleeping instead. That would allow him to swim, although with much more supervision than other children. He'll also still need carers to watch him at night.

"This is a lifelong condition," Ms Bofinger said. "He'll probably never be able to live alone because of the risks and complications that could happen whilst he is asleep."

Archer also has bowel issues and he cannot control his body temperature or breathing rate, which means when he's older, he'll be unable to play strenuous sports, for fear of passing out.

He has been given the additional diagnosis of Hirschsprung disease, which causes bowel blockages, and is associated with CCHS. Together the two conditions are known as Haddad syndrome. Archer had an operation to remove a third of his colon as a baby and required a colostomy bag until corrective surgery before his first birthday.

Despite his significant health challenges, his parents say they feel fortunate he's able to breathe by himself during his waking hours. "There are quite a lot of cases of CCHS where they can't breathe day or night without a ventilator," Ms Wallbank said. "We're quite lucky."

•To donate to the Children's Hospital Foundation: childrens.org.au



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