Health Watch: The truth about newborn screening tests

By Michelle Langowski

Amarillo, TX - An Amarillo family has a warning for new parents after a roller coaster journey with their child. NewsChannel 10's Michelle Langowski has more in this week's "Health Watch."

The King family was told their son Baker had a genetic disease at only a month old.  Now the family is hoping their story can help other parents. This is Baker. He is now two years old and healthy, but it wasn't always that simple. When Baker was just a month old, doctors became alarmed when his infant testing came back abnormal. "We were hearing liver failure, failure to thrive, and all these setbacks. And we were thinking, he is so healthy. He is advanced with the things he is doing, so we were confused about how he had this," said his mother Kenley.

She was told her son's test came back positive for galactosemia, A rare genetic metabolic disorder which can cause serious complications with brain development. The disorder was detected from her son's PKU test. The heel prick test is done immediately after birth.
Something new mom Kenley didn't think much about. "You're sleep deprived, you're tired. I didn't once think to ask, 'Well, what exactly is this?' I just didn't, I thought this is something everybody has to do."

The newborn screening tests for 27 diseases and is mandatory in the state of Texas. And although some parents try to opt out of the procedure, Kenley and local doctors we spoke with say that can be very dangerous. Texas Tech Physician, Dr. Todd Bell says, "there is the option of opting out, but technically it is only for religious reasons and I think it's almost always a bad idea. Because if we are able to pick-up on one of these diseases and we're able to make an intervention, it's really going to change someone's life for the rest of their life."

With the stress of becoming a new mom, Kenley wasn't aware of all that the testing screened for, until she received news that her son was sick. After months of doctors visits, lab work and waiting, they received news that Baker was only a carrier of the gene and that he was healthy.
 "Just to know we all go through this, all of our babies have to get the heel prick test and I definitely wouldn't do anything to opt out of it. Just go ahead and do it because of course if something is wrong, you want to know about if from the beginning."

She wishes she would have known more about why the testing was done, and hopes their story will help educate mothers to be. "When the benefits start to outweigh the risks, for just a five second heel prick, it is sad but for me it just gave me so much more information that I think everybody should have." Some parents wonder why the heel prick test needs to be done twice on their newborns, but Dr. Todd Bell says it is necessary to ensure the most accurate reading.