CMN: Even with outlook bleak, child overcomes surgeries to beat - KCBD NewsChannel 11 Lubbock

CMN: Even with outlook bleak, child overcomes surgeries to beat the odds

(Source: KCBD) (Source: KCBD)
(KCBD) -

According to the National Institute of Neurological Disorders and stroke, about one of every 500 babies are born with a condition called hydrocephalus, or the inability to properly drain fluid off the brain.

In children, it can cause enlargement of the head, delayed development and sometimes death.

Most little ones with the condition will need surgery, a scary thought for parents. But, as the Janssen family shows us, having a great support system and determination like their daughter, Claire,  makes this tough situation easier.

Finding out you're having your first baby is an incredible feeling.

"And as all new parents, we were excited, but also nervous as to what you're going to be like as a parent," Dusty Janssen said. 

But it can also be incredibly scary, especially for new parents Dusty and Mindi Janssen. 

"We went in to get our first ultra sound at 12 weeks and they said that they wanted the doctor to talk with us," Dusty said. 

They discovered their baby, Claire, had a bright spot on her heart, kidney problems and abnormalities with the shape of her brain. They called it obstructive hydrocephalus, meaning her body wasn’t properly draining fluid off her brain.

At that point, the Janssens had moved from Washington state to Lubbock, where Claire started seeing neurosurgeon Dr. Muhittin Belirgen, a neurosurgeon with UMC, and found out they were pregnant with their second daughter Camille. Claire already had a cat scan and several MRIs, but when they arrived at the hospital for her sister's scheduled C-section, things took a turn. 

"We're in the hospital room and Dr. Belirgen's office actually called Dusty and said we have the results of Claire's scan," Mindi Janssen said. 

"We compared the scans with what they did in Seattle and here, and we realized the water spaces are getting worse, getting larger," Belirgen said.

Dec. 18, 2014, 20-month-old Claire had an 'endoscopic third ventriculostomy'. 

"We do a very little cut on the top of the head, and with a camera we go to the water spaces and then try to make a hole to bypass the normal circulation of the spinal fluid," Belirgen said. 

The procedure was successful, but they still had a long road ahead of them, dealing with neurological setbacks. 

"She was very weak, using her hands together was not there at all, so we started working on that, and find motor strength, fine motor coordination, all trying to just get her ready for school and being able to take care of herself," Christy Pitner, Claire's occupational therapist, said. 

For about a year, Claire attended speech, physical, and occupational therapy, sometimes multiple times a week, improving more each day. 

Hitting each milestone with ease, and today, she seems like any other kid. 

"At the beginning of the year, it was definitely a little nerve-wracking to see if she would have the same balance as the other kids, and she goes slower, but she can do everything those other kids can do, and she has the confidence to do anything that anyone in my class can do," Amy Hess, Claire's preschool teacher at Calvary Baptist, said. 

"Just to see the change in her at first when she would talk people couldn't understand her, before we didn't know if she'd be able to run and she can move now, so it's just awesome to see," Mindi said. 

Claire's parents say they're thankful for the wonderful doctors here in Lubbock, and for being involved with Children's Miracle Network. 

"It's such an honor to be a voice for kids in this community, because we can firsthand say the giving that people of this community do, many of them don't have kids, but they're helping people on the South Plains access care that is so needed procedures, place to sleep."

Looking back to the day they got the news,  Dusty and Mindi say they never lost hope. 

"One of the doctors came in and said that things weren't OK and I'll never forget that Mindi was just still laid there just had Claire and as strong as anybody's ever said just no, everything will be okay. She's a bright spot, and we're so grateful and proud to be her parents." 

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