At first glance beautiful baby Tristan seems healthy as can be until you realize she’s hooked up to a lot of medical equipment.
She has to be fed with a G-tube through her stomach.
Dad Caleb and mom Tasha thought they knew what to expect then.
“I noticed that while she was feeding she would latch fine and then she would pull off and she would kind of choke a little. Later that day we noticed her respiratory rate she was breathing really hard,” mother, Tasha Caleb, says.
She also had a slight fever, so they rushed to the hospital only to learn Tristan had a life-threatening problem.
“When she swallows it doesn’t go down the esophagus. It goes down the airway. She doesn’t realize that this is happening. In some ways it’s basically like drowning,” Caleb says.
It’s a form of what’s called Dysphagia.
Caleb says they’ve seen dozens of doctors and even consulted a top specialist in Boston.
“Every doctor that we have met has had different ideas, they’re not really on the same page. They just kind of shake their heads because they can’t pinpoint what’s causing this and they can’t tell us what we need to do.”
Right now a few days a week she goes to the Children’s Center where she gets to drink from an actual bottle with therapist Heather Jarvis.
Jarvis says electrodes are placed on Tristan while she feeds for stimulation.
“Tristan’s condition is a little different from other children that have aspiration simple because they don’t know what is causing the aspiration. We can’t identify why the muscles aren’t working the way they’re supposed to. She’s normal and healthy in every other way.”
Her parents life – far from normal as Tasha explains.
Tasha says, “So far I’ve had to quite a full time job to stay home. No one feels comfortable of babysitting her.”
Tristan’s condition is normally connected to bigger health issues – but Tasha says doctors can’t find a bigger issue here.
“No genetic condition, no motor or muscle condition.”
Frustration and fear mounting. These parents are now asking for help.
“She’s going to be crawling soon and she’s going to be crawling around but she can’t eat or drink. If there are any other people or anyone who is experiencing this what else can we do,” Tristan’s parents say.