Missouri to increase newborn screening for diseases

KANSAS CITY, Mo. (AP) -- Eight-year-old Alexis Knapton, who suffered from a rare disease that prevented her body from properly converting fat to energy, died before her parents knew what was killing her.

Since Alexis' death last year, her mother, Kelly Peters of Weston, has been pushing health officials to increase the number of diseases for which newborns are screened.

If Alexis' disease -- Medium Chain Acylcoa Dehydrogenase Deficiency -- had been caught sooner, the girl might have survived by changing her eating habits.

Expanded screening "is something that needs to be done all over the place," Peters said. "There are babies that are dying or being severely handicapped every day because they are undiagnosed."

On Wednesday, the state Department of Health and Senior Services gave Peters some good news: The number of rare genetic disorders for which Missouri screens newborns will increase fivefold early next year.

Missouri currently screens for five diseases but expects to increase that number to 25. The department estimates 15 to 20 additional children will be diagnosed as a result.

Also Wednesday, the March of Dimes released a report showing Missouri trailing most states in the number of metabolic conditions for which it screens. Just 14 other states test for five or fewer disorders, the March of Dimes said.

Missouri's planned increase is good news to Alyson Alberts, a 26-year-old Grandview woman who just delivered her first child, Sophia.

"As long as they can incorporate it into the same (blood) draw, I think that would be great," Albert said. "I figure the little bit of discomfort is worth the benefit of knowing and preventing the complications that come with not being able to treat" a disease.

Hospitals collect a few drops of blood from newborns and send it to the state health lab in Jefferson City for screening.

Several years ago, legislators approved a law that mandated the added tests, subject to state funding.

Larry Evert, assistant director of the state health lab, said state money never came, so health officials secured federal money to pay for the lab equipment to do the new tests. The health department will charge $15 to $20 more than the current $25 fee for the tests. That fee generally is covered by health insurance, Evert said.

Missouri currently tests blood samples from about 75,000 newborns a year, identifying about 35 children annually with metabolic disorders.

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On the Net:

Health department: http://www.dhss.state.mo.us