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The delivery room was eerily quiet when Ashlea and Paul Myson’s first child was born. The little girl didn’t make a peep.
“Stella was completely silent,” Ashlea recalls.
At the time, doctors thought because she had had the umbilical cord tightly wrapped around her neck when she was born, that her larynx had been bruised.
With a little time, thought her parents, who live in Cape Town, she would soon be gurgling, cooing and crying – like any other infant.
Weeks turned into months and Stella stayed silent, not even crying. “She was an abnormally quiet baby,” Ashlea says.
The little girl was three months old when doctors figured out what was going on – she had a rare congenital condition called laryngeal web.
A laryngeal web is a layer of tissue which develops in the larynx. It is formed when a baby is developing in the early stages in the mother’s womb but fails to disappear as the baby grows.
It typically affects a child’s voice and breathing.
A few weeks after Stella’s diagnosis, the web tissue was removed – and doctors discovered that her trachea was incredibly narrow too. “Her airway was less than 1mm wide,” her mom tells us.
A human trachea is usually about 2cm wide.
Stella would need surgery to widen her airway – but it could not be done until she was older, her parents were told.
Instead of a house filled with the sounds of a little girl growing up and learning to talk, the family had to endure six agonising years of complete silence from Stella.
“As a parent, I blamed myself. I wondered what I did wrong during my pregnancy and how I could’ve prevented this, because I tried to be so careful.
“I felt like a failure and went into this really dark place,” Ashlea says.
“Stella didn’t cry at birth, she never made a sound. My husband and I never heard her cooing baby voice say, ‘Mama and Dada’.”
But
Ashlea learnt to stop blaming herself, she says, and embraced motherhood.
Her advice to parents who have children with different or special needs is to find support from other parents in similar situations.
“You have to find your community because this can be an extremely lonely journey.
“Give yourself permission to grieve and feel the pain of what is happening to your child.
“And, lastly, find your child friends who have special needs too; do not try to pretend your child isn’t different because they are, and they will know.”
Ashlea and Paul went on a sign language course, and taught their daughter to sign when she was six months old. “Her receptive language is really good too,” her mom adds.
Stella went under the knife a year ago, just before South Africa’s Covid-19 lockdown began.
Surgeons removed a piece of her rib cartilage and inserted it into her trachea to enlarge it, so she would be able to use her larynx.
Stella spent six days in intensive care before she was sent home to recover. “She’s got a pain threshold second to none so she really did recover well at home,” Ashlea says.
She
spent four months with a stent in her throat to allow the graft to widen the
airway, but thankfully, doctors said the op was a success, and Stella now has
the use of 60% of her airway.
She’s set to undergo another op later this year, which should allow her the full use of her voice.
It’s
a thrill that she has her voice, her parents say. “We have an entire window
into what’s going on in that little head! Before [the op] she faded into her
own world because she wasn’t able to fully express herself and now it’s like
getting to know this whole little person.”
Her voice is still soft and gravelly, but her personality has blossomed. “We’ve discovered that she’s actually hilarious,” Ashlea says with a laugh.
“She’s got one hell of a sense of humour. She makes us laugh every single day. It’s typical six-year-old jokes, but how she comes up with some of these things we don’t even know.”
“Her
first word was hyena,” says Ashlea, explaining that it was inspired by their
family’s mini getaway to the Kruger National Park before her operation. “She
was absolutely fascinated by all the animals, especially the hyenas.”
The pre-schooler, her mom says, understands that she’s different from other kids.
“She
is remarkably strong, stubborn, sweet and kind, and she getting to a place
where she does understand that she is different, and that’s one of the reasons
we have put her in a school that has more of an accepting environment.
“As a mom I am so proud of her,” Ashlea adds. “I went from thinking, ‘Why my baby?’ to ‘How did I get so lucky that she’s mine?’ because this amazing human being has taught me so much.”
