MDH expanding baby screening program
Catching a rare and debilitating condition early can make all the difference… especially for the youngest Minnesotans.
And now, with the state already a leader in newborn screening, the Minnesota Department of Health announced it will be expanding its program – adding three new conditions to the list that’s already more than 60 strong.
“It’s huge,” Jill Simonetti, manager of MDH’s Newborn Screening Program, said about not only screening babies early, but also about the additions.
“These conditions, all three and most that we screened for, they’re hidden,” Simonetti said, adding: “So, when baby is born, they appear like a typical healthy newborn [and] everybody’s happy, but, it’s lurking, right? Nobody knows.”
The three new conditions added to the program are as follows:
- Guanidinoacetate Methyltransferase Deficiency (GAMT)
- It can lead to neurological problems
- Mucopolysaccharidosis Type II (MPS II)
- It’s found almost only in males and is also known as Hunter Syndrome
- Krabbe Disease
- It can be fatal if not treated in time
“[Krabbe Disease] a disease that starts to pick away at every element of their body,” Stacy Pike-Langenfeld, whose daughter Makayla died from complications from Krabbe disease, said.
“It was very devastating to watch her deteriorate little by little,” she added. “My hope is that with this newborn screening, it provides quality of life,” Pike-Langenfeld said about future families who will be able to detect the disease before it’s too late.
Since Makayla’s death, Pike-Langenfeld has channeled her grief into motivation, advocating with Krabbe Connect and directly helping the disease get added to the state’s screening program.
“I’m just living out her legacy, because she wants kids to not live the life that she lived,” Pike-Langenfeld said.
MDH said last year, they screened more than 62,600 newborns and recommended early intervention and treatment for conditions for about 400 of them.