KIDS WITH COURAGE: Xenia Berwald

ST. PAUL, Minn. (KTTC) – KTTC is honored to introduce viewers monthly to some of the youngest among us, facing the unthinkable with bravery and optimism. In our 15th “Kids With Courage” segment, Caitlin Alexander introduces us to 3-year-old Xenia Berwald.

November is an excellent time for families to reflect on what they are grateful for. For the Berwald family in St. Paul, they’re thankful for something quite simple: that Xenia is feeling well.

“I’m Xenia!” the toddler proudly proclaimed to KTTC on a recent video call.

Her parents explained she’s currently into anything Disney, Frozen, or princesses.

But unlike some of her favorite movie characters, this princess’s battle is ongoing. It started in her very first month of life.

Xenia was having trouble gaining weight as a newborn.

She had her first surgical procedure for an issue with her airway.

It wasn’t long after that doctors handed down another diagnosis. Pediatric Neurosurgeon Dr. Kyle Halvorson was on her care team at Children’s Minnesota.

“They had gone through an extensive workup to figure out what was going on with her, and they got imaging just to be sure there was nothing wrong and, lo and behold, they found the Chiari malformation,” recalled Dr. Halvorson.

According to Children’s Minnesota, a Chiari malformation is “when the cerebellum--the part of the brain that controls coordination and muscle movement--pushes down through the hole in the bottom of the skull.”

Xenia was having trouble with things like sleeping lying down.

Dr. Halvorson met with Xenia’s parents, Joshua and Joy, to talk about repairing her Chiari malformation.

They went to another hospital for a second opinion and that’s where Xenia had her first neurosurgery at about 7 months old.

Then, a few months passed.

“She started having choking episodes. So, she was having a lot of issues swallowing and she started losing weight again,” Joy said.

The Berwalds returned to Children’s and planned a path forward with Dr. Halvorson. They agreed to do a surgery that went further than the one she’d had before.

Doctors found more issues than what had initially shown up on imaging.

On top of that, Xenia experienced complications.

“We went back in. She had developed meningitis and the cerebral spinal fluid leak,” Joy said.

Doctors placed what’s called a shunt to stop her spinal fluid leak. As fate would have it, she had complications with that too.

She’s had numerous revisions since then.

“If there was a complication, she developed it basically,” said Joy.

In all, Xenia has had 10 surgeries. Eight of them have been neurosurgeries.

With all these complications, there’s still a missing piece in her diagnosis.

“I think I’m constantly going like, ‘Is there something else coming down the pipe, so there’s just a lot of unknowns still,’” Joy said.

Dr. Halvorson believes there could be a connective tissue disorder involved, but he indicated that’s hard to determine in a child of her age.

For now, having a toddler with serious medical problems and a lot of unknowns means a lot of worrying.

“If she has a hard time going to sleep or a day where she’s just grouchy and throwing things like is this a medical emergency or is this a 2-year-old?” Joshua said.

It helps that through it all, Xenia has stayed her spunky self.

She loves to dance, and she loves her siblings. She has a big sister and little brother.

“She’s had the whole host of neurosurgical issues to manage, but she’s a super bright kid, and she’s really really thriving now. It’s fun to see her in clinic,” Dr. Halvorson said.

“She’s funny! She’s really funny and really outgoing,” Joy said.

This princess’s battle isn’t over. But as a Kid With Courage, she’s well on her way to her happy ending.

For that matter, the group “Wishes and More” sent Xenia and her family to Disney World for her third birthday in early November!

Children’s Minnesota’s year-end giving campaign is happening now. A spokesperson told KTTC, “Thanks to donations, Children’s Minnesota has the technology and expertise to deliver the care kids like Xenia deserve. As a nonprofit, we rely on the generosity of the community.” You can learn more here.

If you know a Kid With Courage Caitlin should meet, email her at kidswithcourage@kttc.com.

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