Karey Padding returned home in November 2010 the mother of what she believed to be a healthy baby boy.
A few days after she and her son, Gavin, were released from the hospital, her pediatrician’s office called. One of Gavin’s newborn screening tests came back abnormal. He was later diagnosed with cystic fibrosis.
“We were shocked, devastated, scared and had so many questions,” Padding said.
Padding shared her son’s story Monday with the Senate Public Health and Welfare Committee while advocating for Senate Bill 346. It would expand newborn screening programs in Kansas.
Padding said friends whose children weren’t diagnosed with cystic fibrosis as early as Gavin had struggled with weight and health issues.
If the bill passed, Kansas would be the sixth state to mandate screening for all 35 conditions recommended by the U.S. Department of Health and Human Services. The state currently screens for 32.
Paloma Juarez, of Prairie Village, said her son’s life could have been drastically different had she stayed in Kansas rather than give birth at St. Luke’s Hospital in Kansas City, Mo. Her son, Vaun, was screened for Pompe Disease as part of Missouri’s newborn screening process.
The genetic disorder causing a deficiency in enzymes that break down complex sugars is one of three not screened in Kansas.
“Not only did early diagnosis keep Vaun alive, it impacted his quality of life,” Juarez said. “He can walk and run and jump, things I took for granted before I knew my son might never be able to do those things.”
Kansas also doesn’t screen for Mucopolysaccharidosis type I (MPS-I) and X-linked adrenoleukodystrophy (X-ALD).
The bill would increase the cap on state funding for newborn screening from $2.5 million to $5 million.
Others in support of the legislation included Cure SMA, the University of Kansas Health System Department of Pediatrics, the Kansas Hospital Association and Kansas Chapter of the American Academy of Pediatrics.