CSD lecture discusses Jane Sweet’s struggle with CMV

On Nov. 17, Laura Sweet led a lecture for Communication Science and Disorders students. The topic of the lecture was her two-year-old daughter, Jane and her struggle with congenital cytomegalovirus (CMV).

Jane was recently featured in a New York Times article highlighting the sickness. CMV has many of the same routes of transmission and adverse effects on a fetus as the Zika virus, yet receives far less media attention than this infamous outbreak.

Cytomegalovirus is a common herpes virus perceived by healthcare professionals to be a minor risk to one’s health. CMV causes mild or no symptoms in adults with healthy immune systems. Congenital CMV occurs when a fetus is infected with the virus, which is the most common virus to infect developing fetuses.

CMV spreads by exchange of body fluids. Young parents are often infected by their toddlers while changing diapers or sharing food. Congenital CMV causes thousands of birth defects in the U.S. each year, including microcephaly, hearing loss, jaundice, learning disabilities and lung issues. In some cases congenital CMV leads to stillbirth. There are few treatment options, often because of the toxicity thresholds for the particular medications. These medications are more effective when they are started early, which is rare due to the lack of screening of newborns for CMV.

When Jane Sweet was born she seemed to be a healthy newborn baby at just over 7 pounds. Sweet did not, however, pass her newborn hearing test and was referred to an audiologist. Jane was one of the 20 percent of babies born with congenital CMV who develop birth defects.

Jane’s initial tests for CMV came back negative, beginning the Sweet family’s journey through months of medical tests. Jane wore hearing aids for the first year of her life. It was not until she was evaluated for bilateral cochlear implants that white matter was discovered in her brain, indicating that she either had CMV or a degenerative genetic disease called leukodystrophy.

Knowing that CMV can only be diagnosed as congenital in the first three weeks after birth, Laura Sweet obtained a blood sample that was taken at Jane’s birth. The sample confirmed Jane’s congenital CMV.

To combat the hearing loss, Jane now wears cochlear implants. The implant has external speakers that connect magnetically to the device under her skin. The implant converts sound waves into an electrical signal. An electrode then brings the digital information from the implant to the final nerve that audio information travels through to reach the brain. The implant does the job of the basilar membrane and organ of corti, whose function is to convert the pressure of sound wave into electrical signals that the brain can read.

Neither Laura Sweet’s midwife nor gynecologist warned her about this common and dangerous congenital virus. The American College of Obstetricians and Gynecologists suggests against informing mothers about CMV, claiming that it is “unproven as a method to reduce the risk of congenital CMV infection,” and that because of CMV’s limited treatment options, doctors should discuss more manageable complications.

Only nine percent of women know what CMV is, according to The National CMV Foundation’s website. The site offers a prevention tips webpage encouraging pregnant women to wash their hands frequently, especially after diaper changes or wiping a child’s nose. It is also recommended that one does not share food, drinks or eating utensils with their child.

Only six states in the U.S. have passed legislation on CMV screening or CMV public awareness campaigns, Sweet said at the lecture on Thursday.

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