CMV law a win for local family

SANDPOINT — When Idaho Gov. "Butch" Otter signed Senate Bill 1060 into law this week, it was a huge win for one local family, among others.

Jessica Rachels, a Kootenai mom, has been working with Idaho legislators on the bill in hopes that, through education, soon-to-be moms will avoid contracting cytomegalovirus — one of a few viruses that can pass through the placenta to the fetus.

"It shows that a few moms can move mountains to save lives," Rachels said in an email to the Daily Bee.

Natalie Rachels, 11, was born with CMV after her mom unknowingly contracted this "silent virus" while she was pregnant. The virus typically shows few, if any, signs and may simply feel like a cold. But when a child is affected in the womb, it can cause damage to the child's brain, eyes and/or inner ears. It can also cause miscarriage or death of the child after it is born. One in 150 children are born with CMV and nearly one in every five who are born with CMV develop permanent disabilities.

Natalie seemed to be a healthy baby, despite failing her newborn hearing test. Her head was a bit small as well and she had reflux issues. When she was two-and-a-half months old, bloodwork confirmed Natalie was infected with CMV. She has since undergone 10 surgeries, cerebral palsy, hearing loss, feeding issues, scoliosis, has cochlear and other implant devices, is wheelchair bound, and developmentally is only four to six months old. Over the course of her life, Natalie has cost the state $1.1 million, Rachels said.

Although her obstetrician knew Rachels worked in childcare, which put her at high-risk for CMV, she was not warned about the virus when she was pregnant. Because the virus can be passed through the placenta, the law will now require the state Department of Health and Welfare to make available up-to-date and accurate information regarding CMV to health care providers, day care providers, churches, schools and more.

Some preventative measures, Rachels said, are universal handwashing and not sharing food or drinks. Because the virus is passed through bodily fluid and is not airborne, it is also important for soon-to-be moms to kiss their other kids on the cheek, not on the mouth.

Rachels discovered a wealth of supporters in the Legislature, including Sens. Shawn Keough and Mary Souza who are supporting the trailer bill for a $15,000 fiscal note. A trailer bill is a bill that is connected to the original bill, but the fiscal part broke off into its own bill, and while SB1060 has become law, the trailer bill has not yet passed. Sen. Lee Heider, the bill sponsor, and Rep. Kelley Packer have been key players as well, Rachels said.

One of the biggest advocates, and the first person Rachels spoke with about going forward in the Legislature with a CMV education bill, was Rep. Heather Scott. During the House Floor hearing for the bill recently, Scott could barely finish naming the disorders Natalie suffers from as she had to fight back tears throughout the long list before adding, "she is a happy little girl confined to a wheelchair."

“I am so excited that the Rachels' bill was passed into law," Scott said in an email to the Daily Bee Tuesday. "This bill will help with public awareness and prevention of the CMV virus in mothers and their babies. The Rachels family has worked tirelessly to bring attention to this issue and I commend them for all their hard work.”

Mary Malone can be reached by email at mmalone@bonnercountydailybee.com and follow her on Twitter @MaryDailyBee.