9-month-old baby with rare condition can’t blink or smile
Mom of 5 neurodivergent kids finds her purpose in rare diagnosis
Victoria LaBrie was a special needs educational assistant before quitting her job to focus on the needs of her children. She has five kids who all are neurodivergent.
ST. FRANCIS, Minn. (FOX 9) - Victoria LaBrie, 31, has always had a love for special education.
"Nobody expects that this would be their life," she said. "It is my calling."
5 kids with special needs
What we know:
LaBrie was a special needs educational assistant before quitting her job to focus on the needs of her children. She has five kids who all are neurodivergent.
Five-year-old Colton is what she calls autistic savant, 7-year-old twin daughters Harley and Harper are autistic, Victoria’s 14-year-old sister, who she adopted, has ADHD and Victoria’s youngest daughter, Hazel, has an extremely rare neurological condition affecting facial nerves and muscles.
This condition has taught her a lot about Moebius syndrome, and now Victoria is teaching others.
What is Moebius syndrome?
Why you should care:
Moebius syndrome is a form of facial weakness or paralysis of facial muscles. It happens when certain cranial nerves don’t develop as they should during pregnancy.
According to the Moebius Syndrome Foundation, there are roughly two to 20 cases per one million births. The condition may occur with other symptoms like hearing loss, developmental delays and club foot, which is what Hazel has.
"Moebius syndrome was nothing that we were tracking, not a thing," Victoria said.
The condition isn’t curable, but doctors say many people with Moebius syndrome are able to live normal lives. Just like 9-month-old Hazel, babies born with this condition often can’t raise their eyebrows, smile, frown or close their eyes.
Hazel’s slight eye movements are the only signs of expression. Her mom reads her emotions by the direction of her eye movements. If she’s upset, Victoria said Hazel’s eyes move in different directions. If she’s happy, Victoria said Hazel’s eyes are focused.
"Her eyes really do say everything."
Since Hazel is unable to fully close her eyes on her own, Victoria does it for her. At times throughout the day, she will close her eyes and use eye drops or lubricating gel.
Victoria’s ultrasounds
The backstory:
When thinking back to any obvious signs of this condition, Victoria remembers her doctors’ appointments when scheduled for ultrasounds.
"Her eyes were wide open on an ultrasound and we would always just talk about how cute it was," she said. "Like, wow, who gets to see that? Not many people. But then it happened again. And it's like, wow, that's lucky. So then when she was born and her eyes were wide open then I was like, something is not right."
At 20 weeks pregnant, Victoria heard from her doctor about possible issues with her pregnancy.
"They thought her brain had fused together. It was actually suggested or more so kind of like, here's grief packets type of thing," Victoria said. "What are you wanting to do? And it took a lot of testing to get to the point where we found out that that wasn't the issue."
Through an MRI, Victoria learned Hazel had hydrocephalus, a neurological condition caused by an abnormal accumulation of fluid.
This has impacted Hazel’s ability to tolerate milk and grow. Essentially, at 9-months-old, Hazel is like a newborn.
"When we initially saw her, we had suspected that the buildup of excess fluid, which is called hydrocephalus, is causing a pressure on the brain which was not letting her develop normally so she was impaired with respect to her alertness and her feeding." Dr. Edward Ahn, Hazel’s neurologist at Mayo Clinic said.
Hazel has a G-tube for feeding and hydration.
Dr. Ahn placed a shunt into the area of her brain, which is a tube that helps drain the fluid.
"We have done a number of surgical interventions to try to relieve that pressure," Dr. Ahn said. "The shunt is a device that we commonly use to relieve pressure in the brain; it drains the fluid down into the cavity in the abdomen. It’s something that children can grow up with. We have many kids who have these and do normal things like play sports and attend school and it essentially is a life saver for the children."
‘My only goal in life is their happiness’
What's next:
"My only goal in life is their happiness, and I know it doesn't seem like I'm getting there, but I am trying."
As FOX9 reporter Symone Woolridge talked with Victoria about the effects of Hazel’s condition, she saw it for herself.
"It's hard to be a medical parent. It's really hard and I think it's amazing that he (Hazel’s dad, Bobby) cares so much about making sure she's okay and all that but also, it's very demanding," Victoria said as she had to briefly leave the interview.
"Tori! There’s something… she’s turning red," Bobby shouted from the other room.
Victoria calls these moments, good and bad days.
Some of these moments she has decided to share with the world to spread awareness.
She posts videos showing her experiences, and explains Hazel’s rare condition to the millions of people who now watch her videos on TikTok.
"She is lifting hearts. People are saying that I didn't know I needed to be grateful for blinking," she said. "Families everywhere are going to know who Hazel is and I can rest easy knowing that if we're loud and proud about what she has going on that these families are talking about it to their children."
Victoria created a GoFundMe in hopes to purchase a one-story home for her children that will focus on minimizing sensory overload and maximizing safety.