Girl with floppy baby syndrome makes great progress at Texas Children's Hospital West Campus

Friday, May 20, 2016
Girl with floppy baby syndrome makes great progress at TCH
A little girl battling a musculatory disease is making huge strides, thanks to doctors at Texas Children's Hospital.

HOUSTON (KTRK) -- A little girl battling a musculatory disease is making huge strides, thanks to doctors at Texas Children's Hospital West Campus.

"Having a sick child is like a full time job. Their successes are your successes, and their hardships and your hardships," Morgan Vonberg told us.

The Vonbergs' daughter Verity has overcome some monumental obstacles in the past two years. But the journey getting here has been a challenging one.

"During the pregnancy they told us there would be complications. But we just knew she was meant to be here and we had to see it through," Morgan said.

After she was born on August 5, 2013, "they diagnosed her right away with lax ligaments, hypotonia, and torticollis, which sometimes is considered floppy baby syndrome," Morgan said.

It's a devastating diagnosis, with numerous limitations.

"So they told us she might not roll over. She might not sit up, she might not crawl, she might not walk," Morgan explained. "She got the title of failure to thrive. She was wearing 3 month sized clothes when she was a year old. We had prepared ourselves for a life with a wheelchair, and possibly a feeding tube."

During this time, Morgan's husband Andrew was transferred from Michigan to Houston for work. Before the family moved, they needed to find someplace for Verity to continue her therapies and found Texas Children's Hospital West Campus.

Morgan said, "We toured West Campus before we even signed for a house because we needed to make sure that we were in the right area for her."

After the move, Verity started to make progress.

Speech Language Pathologist, Laura Loveless said, "When she first started, she really wasn't able to drink from an age appropriate container. She's made great strides in what she will eat in a therapy session. But often there's a challenge getting that to transfer to a home environment and that's what we're currently working on."

Around the same time, Verity reached a milestone.

Morgan said, "And then after the first two months she said Mama, which is huge for a mother. That's like all you want to hear is your child calling your name."

For a little girl who wasn't supposed to walk, Morgan and Andrew say their daughter is doing exceptionally well today. They have hope she'll continue to grow and improve.

"The physical therapy has been exhausting, really tough, but we've been sticking with it. And she has the personality to overcome stuff," Morgan said.