Janae Nieuwenhuis with daughters Lexi, Emma, and Shea. Lexi was diagnosed with CMV shortly after birth. PC: Fox 11 Online
APPLETON, WI (WTAQ-WLUK) – A Fox Valley family is sharing their daughter’s medical story in hopes of bringing awareness to the effects of a common virus. They’re advocating for change and education.
Janae Nieuwenhuis, a mother of three, knew from the beginning something was different with her third child, a daughter Lexi, now 13 months old.
She said, “I gave birth to Lexi and me and my husband noticed right away she had an extremely small head. She was covered in this little rash, it’s called petechiae. The nurses said it would go away, nothing concerning, but it was actually a symptom of CMV.”
Cytomegalovirus or CMV is a common virus, spread person to person through bodily fluids like blood or saliva.
According to Dr. Jennifer Szmanda with ThedaCare Physicians Pediatrics-Appleton , “Most of the time it causes a common cold in adults and children alike. In select populations it can cause some developmental problems, and things like that, especially if moms contract it when they’re pregnant.”
And that’s exactly what doctors think happened with Janae Nieuwenhuis, as her daughter was eventually diagnosed with congenital CMV, contracting the virus from her mother in utero.
The leading cause of childhood hearing loss, and developmental disabilities — congenital CMV has left Lexi Nieuwenhuis with a litany of medical issues, “Hearing loss in both ears, PMG which is brain abnormalities and damage because of the virus affecting her whole brain so it’s going to cause some delays and hardships for her. She got diagnosed with infantile spasms and epilepsy something they think she is always going to have for the rest of her life. She has muscle tone issues. We’re working on just trying to have her sit independently and crawl,” added Nieuwenhuis.
One in 200 infants in the U.S. are born with CMV.
“I really don’t want people to be afraid of it. Most of the time or a lot of the time when you get CMV during pregnancy, sometimes it doesn’t cause any problems for the baby. It doesn’t mean that you have it’s going to cause problems. Sometimes it does though, but if we watch those baby closely we can set them up with all of the things to kind of help them thrive as best we can,” said Dr. Szmanda.
Only learning about CMV and the complications that could come with it through her daughter’s diagnosis, Janae Nieuwenhuis wishes there had been more information about the virus during her pregnancy.
She said, “To be more prepared and have the information before your baby is born to know what you’re going to be up against versus we were just kind of thrown right into it and had to figure it out and quick scramble and it was overwhelming.”
Nieuwenhuis is now working with ThedaCare and Lexi’s doctor to bring more awareness to the virus and the potential complications that come along with it. Literature about CMV is now available in ThedaCare clinics, thanks to Nieuwenhuis.
And, she and Lexi’s pediatrician would like to see a CMV test eventually become part of the newborn screen too.
Dr. Szmanda said, “I think that can at least kind of bring to light some of the kids that have CMV and then we would know do we watch them more closely, do we do early intervention a little sooner than we would normally. I think it can help to change a lot of outcomes too.”
By bringing awareness to the virus, the hope is patients will feel comfortable talking with their providers about it, before, during and after pregnancy.
Nieuwenhuis added, “I love Lexi and know it’s been hard and a lot to swallow all of this and adjust to a different life but with it I want good to come out of it as well. If I can help one or even a few people with having support or being aware and knowing about this I think that would be fulfilling and make a difference for people.”
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