Parents Of Denver Baby With Hydrocephalus Hope To Raise Awareness

DENVER (CBS4) - A Denver family is sharing their story to raise awareness about hydrocephalus. It's a condition that affects 1 out of 1,000 babies.

"When she was 6 weeks old, actually, and it was just a routine pediatrician visit and how they had discovered it was that her head circumference had grown off the charts," Arica Heintz, Sophie's mom said.

Sophie's doctor diagnosed her with congenital hydrocephalus, a condition where excess cerebrospinal fluid builds up in the head and increases pressure to the brain.

"We were pretty surprised when our pediatrician said 'You have to go the ER right now,'" Arica said.

Sophie then had her first brain surgery. Doctors tried to clear a blockage.

"You know, you're going into it as parents scared to death," her mom said.

To her parents' surprise, that surgery caused a brain bleed, which led to a stroke, and that led to seizures.

"Her head circumference continued to grow, that pressure grew in her head."

At 8 weeks, Sophie went back for another surgery to place a tube in her head to the drain the cerebrospinal fluid, which is called a shunt.

"Interesting thing is, she has 2 feet of tubing coiled up in her belly that will grow with her," her mom explained.

The shunt will be in place for the rest of Sophie's life. And it's expected that as she grows, things, like eating, crawling and even playing with her siblings, will come with challenges.

"Until you enter the world of special needs, and a rare diagnosis, it's hard to understand what families go through. There are definitely periods of feeling isolated."

Sophie's family believes raising more awareness about her condition could help researchers one day find a cure.

"It would be incredible for us to see other kids not have to go through surgery and be put at risk for those complications," Heintz said.

Today, little Sophie is a happy and active 13 month old, but the Heintzs have to live in fear that the shunt could fail. Though the thought is frightening, they told CBS4 they have faith and hope that the future for her will be bright.

While Sophie was diagnosed as a baby, different types of hydrocephalus can be found in adults. If you'd like to learn more about it, visit hydroassoc.org/what-is-hydrocephalus-an-overview/