Beau’s story

My son, Beau, is three. He’s a very smiley child with a wicked sense of humour. At the moment, fake burps are his thing. He’ll take a drink of water and pretend to belch, which he finds very funny. He loves everything his five-year-old brother, Harrison, enjoys – Hot Wheels, dancing, singing, and being outdoors.

Becoming a parent of a child with complex needs

Despite his comical personality and appetite for mischief, I’ve never actually heard Beau laugh. That’s because ever since he was three months old, he’s had a tracheostomy – an opening in his windpipe to help him breathe – due to an extremely rare and life-threatening condition. Congenital central hypoventilation syndrome (CCHS) is a genetic condition affecting around 150 people in the UK. Put simply, Beau can’t breathe while he’s asleep. He requires 24-hour care and takes a suction machine, emergency tracheostomy box and ventilator everywhere he goes.

Beau was born two-and-a-half months early after an emergency C-section in Worthing Hospital. He was immediately taken to the Neonatal Intensive Care Unit (NICU) in Brighton, and I wasn’t well enough to see him for four days. We didn’t see his face until he was three months old because it was covered in tubes and tapes, and we were told to say our goodbyes twice in his first six weeks.

Eventually, he was diagnosed with CCHS, and we were referred to Chestnut before he was a year old. The hospice supports us with respite care throughout the year, as well as a four-hour community visit each month from our nurse, Helen. We’ve been going to Chestnut’s baby and toddler group, Little Squirrels, since Beau was very small and before he started nursery. It’s a great place for him to socialise with the wonderful staff and other children with similar needs.

Recently, we held Beau’s birthday party here. He attends a mainstream nursery, and I really wanted his friends and their parents to see Chestnut. Unless you’ve visited, you don’t really understand what children’s hospices are about. People expect to see very poorly children and they’re surprised that it’s so full of life.

Getting the care in place to help Beau thrive

When we discovered that Beau doesn’t have any cognitive delays, we knew that we wanted him to go to the same forest nursery his brother, Harrison, attended. Because it’s an outdoor setting, his consultants believe it’s less of a risk for spreading germs. It was hard work to get a core team of nurses and carers in place to enable him to attend – he needs to have two specially trained people with him, as well as two trolleys full of equipment.

I had to give up my wedding business and job as a swimming teacher when Beau was born because he needs full-time care. My husband also had to streamline his businesses. Our whole lives revolve around Beau and his care. Because of the nature of his condition, he must be watched constantly. The simple act of dropping off to sleep is highly dangerous for him and as a result, I find it very difficult to relax myself.

We have agency carers at night but even so, we’re only half asleep most of the night because I’m lying there listening to his machines beep. Or I think I’ve heard a knock at our bedroom door, so I have to get up and check. Beau’s an extremely early riser so my husband, Ash, tends to go to bed at 7.30 and get up with him at 4.30.

When we found out that Beau had to have a tracheostomy and would be vulnerable to infection, I worried that neither of our boys would be able to have a normal life. Harrison was at nursery at the time, and I was worried we’d have to take him out. But touch wood, Beau’s pretty robust. The last time he had to go into hospital was over Christmas in 2023, when he had RSV and Covid, but he’s had a lot of things trying to kill him, including a double lung collapse, pneumonia and meningitis.

I’m always a bit worried that if Beau got lost in a shop, he can’t communicate to say, “Where’s my mummy?” Provided he always has somebody by his side that knows him, he looks like an average three-year-old, but if he were to fall over and pass out without someone trained on putting on his ventilator, he would be in danger very quickly.

Looking to the future with hope

We don’t know exactly what the future holds for Beau. I’m a trustee of a charity working to raise enough money to redevelop existing technology, so that children with CCHS can have a breathing pacemaker which would revolutionise their care. In the US, a lot of children move to mask ventilation when they’re aged between six and nine, and I would like to push for that. If we were able to reverse Beau’s tracheostomy, he would be able to talk, swim and play freely – and I’d finally get to hear my baby laugh.