SANDPOINT — Natalie Rachels will likely be survived by her parents and three siblings, and although it is a hardship on her family, they feel blessed for every moment she is in their lives.
"She is a beautiful girl, who has a smile and laugh that light up a room," said Natalie's mom, Jessica Rachels.
Natalie, 11, of Kootenai, was born with severe disabilities after her mom unknowingly passed on the cytomegalovirus to her while she was pregnant.
CMV is a common virus in the herpes family, but because it is typically asymptomatic, few people know about it or realize that to catch it for the first time when pregnant can be devastating. While it may not affect the carrier or simply feel like a cold, it is one of the few viruses that can pass through the placenta and cause damage to the child's brain, eyes and/or inner ears. It can even cause miscarriage or death of the child after it's born.
Rachels ran an in-home childcare while pregnant with Natalie, her second child, and worked one day a week at a childcare center. She didn't know this was a high-risk environment for CMV as her obstetrician, who knew about her occupation, never informed her of the risks.
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, 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.
Rachels and her husband, Patrick, along with a mom from Nampa and some others, are working with Idaho legislators on Senate Bill 1060 which will require the state Department of Health and Welfare to make available up-to-date and accurate information regarding CMV to health care providers, daycare providers, churches, schools and more.
"So everyone will have access to this information versus being in the dark," Rachels said. "There are things you can do to lower your chances, such as universal hand washing. If you are pregnant and you have a toddler, preschool toddler age, they are sharing germs and everything so there is a higher risk of the pregnant mom getting the virus from them."
She said it is important for pregnant women to kiss their other kids on the cheek rather than on the lips and not share any food or drinks because the virus is passed through bodily fluid; it is not airborne. When the average person reaches the age of 40, she said, between 50 and 80 percent of that population have had what she called the "silent virus."
"Not always will it get passed to the baby, but one out of every 150 children are affected," Rachels said.
Rachels and her colleague from Nampa testified last week during an S1060 bill hearing in Boise. The bill passed the Senate Health and Welfare Committee and went to the Senate floor. On Monday, Rachels said it passed the Senate floor 31-3 and is moving on to the House.
She said this year is a stepping stone to get the education piece of legislation through. Next year she hopes to work on getting a targeted hearing screening that would require CMV testing on infants who fail the newborn hearing test.
"We focus on the here and now, and we are blessed that God gave us an angel who is moving mountains and has inspired her parents and others to work on the S1060 bill," Rachels said.
Mary Malone can be reached by email at firstname.lastname@example.org and follow her on Twitter @MaryDailyBee