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CSB Graduate Founds Local Stop CMV Chapter
10/26/2009
Virus is leading cause of hearing loss in children and causes more permanent damage than Down Syndrome and Fetal Alcohol Syndrome
Each year about 30,000 children are born with congenital CMV. The virus is the leading cause of hearing loss in children and causes more permanent disabilities than Down Syndrome, Fetal Alcohol Syndrome, spina bifida, pediatric HIV/AIDS, and other more well-known congenital infections and syndromes. Yet, obstetricians and gynecologists do not routinely test pregnant women for CMV.
When Saari’s 20-week ultrasound detected a problem with Avery’s brain development, CMV was not considered a leading culprit. Eight weeks later, Avery was confirmed to have congenital CMV.
Although Saari had an ultrasound every two weeks for the remainder of her pregnancy to monitor Avery’s development, doctors were unable to give the Saaris helpful advice. “There were so many unknowns going into Avery’s delivery,” said Saari. “Would she breathe on her own? Would she eat on her own? It felt like we were treading in uncharted territory.”
Doctors estimate that Avery’s brain stopped growing at 28 weeks gestation, but they are unsure what this damage will mean for Avery’s future. The only thing doctors are certain about is that she will need medical treatment for the rest of her life.
Jodi and Matt Saari live in Apple Valley with their two daughters, Brenna, 3, and Avery, 1. “Raising a developmentally challenged one-year-old and a busy three-year old, we just try to take things as they come,” said Saari. “We focus on what Avery can do, not on what she can’t.”
As Avery gets older, she will need a wheelchair and special equipment in their house to help her sit, stand, and be mobile. She will always need special help. “I don’t know what Avery’s future holds. No one does – not even the doctors,” said Saari. “That’s why I want to raise awareness about CMV through Stop CMV.”
Since 2003, Stop CMV has worked to foster awareness about CMV and to familiarize women and their families about the dangers of the virus prior to pregnancy so they can take preventative actions. There is no proven treatment for pregnant women who have CMV.
“Because of Avery, we have been given the opportunity to raise awareness about CMV,” said Saari. “It is our hope that more people will become aware of CMV and the dangers it poses to unborn children.”
Employer to host benefit
Goff & Howard, the public relations and affairs firm for which Saari works, will host a fundraiser in support of Avery and Stop CMV November 18 from 6 to 9 p.m. at Bar Abilene in Minneapolis. The benefit will raise money for the Saari family and CMV awareness efforts.
For more information or to donate, visit www.averysjourney.com.
Institutional Advancement
College of Saint Benedict
St. Joseph, MN 56374
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(800) 648-3468