Bill to inform parents of options for children diagnosed with Spina Bifida passes Senate committee

02/25/2015 04:16 PM

FRANKFORT – A bill which requires that parents be given up-to-date and accurate information when their unborn child is diagnosed with Spina Bifida was unanimously passed by the Senate Committee on Health and Welfare on Wednesday.

Senate Bill 159, sponsored by Sen. Julie Raque Adams, R-Louisville, would require medical providers to supply written, information so parents can make an informed decision on treatment.

Colleen Payne, of the Spina Bifida Association of Kentucky, says when parents currently get such a diagnosis, there is little or no information supplied.

“They receive little to no information, and often what information they receive is wrong, it’s inaccurate, or it’s not a full picture,” said Payne.

The committee heard emotional testimony from Erin Hinson, whose 2 year-old son Henry was diagnosed with Spina Bifida prior to birth.

“We were told he’d never walk, he would never go to a real school, his life would be hard and he would suffer from it,’” Hinson said. “They really told us that our only option was termination.”

Hinson said that the bill will provide parents with much needed helpful information at a time that that they are under a lot of stress.

“It helps families like mine make an informed, educated decision,” Hinson said. “For our family, we chose Henry. Henry was ours and we were going to storm the castle on his behalf and this bill gives us a leg to stand on.”


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