An Australian mom has penned a heartfelt essay in an effort to raise awareness about a virus that is the most common viral cause of birth defects and developmental disabilities.
When Bree Pennie gave birth to her son Dax in 2014, the mother of two had no idea that she had contracted Cytomegalovirus (CMV) around the 20 week mark of her pregnancy. After failing the initial newborn hearing screening test, the family were sent to see a specialist who noted that Dax was born with a smaller than normal head circumference (microcephaly).
After three months of testing, the family received the official diagnosis of congenital CMV. Subsequent diagnosis included cerebral palsy, an increased number of brain folds (polymicrogyria), hearing loss, cortical vision impairment, global developmental delay and epilepsy.
“Dax is four and a half, he cannot walk, he cannot talk,” Pennie wrote in a Facebook post to her page, “The Double Ds take on CMV.” “He is still spoon fed, he is not toilet trained and essentially needs help in all aspects of everyday activities.”
Approximately one in three children in the United States will be infected with CMV, a member of the herpes virus family, by the age of five, with over half of all adults infected by the age of 40. According to the Centers for Disease Control and Prevention (CDC), the virus stays present in the body for life and can reactivate, causing mild flu-like symptoms such as sore throat, fever, fatigue and swollen glands.
While the risk to otherwise healthy children and adults who contract CMV is relatively low, there are serious health risks for unborn babies. The National CMV Foundation states that of the approximately 30,000 newborns born with congenital CMV in the United States each year, 6,000 will develop permanent disabilities such as hearing and vision loss, cerebral palsy or cognitive impairment.
Despite the risks for women of childbearing age, women are not routinely screened for CMV, and there is no vaccine as of yet. Research has found that roughly only 9 per cent of pregnant women are aware of CMV, prompting organizations such as the National CMV Foundation to declare June National CMV Awareness Month.
CMV can be transmitted through saliva or urine, sexual contact, breast milk to nursing infants, and through transplanted organs and blood transfusions.
The lack of education for women in particular can cause many people, including the mothers of children born with CMV to feel angry.
“The biggest question I ask myself is what could I have done differently. Which is easy enough to answer now that I know what I know,” Pennie said. “I would have made myself a fresh piece of toast instead of finishing off my toddler's leftovers as I was running out the door.I would have asked for cheek kisses instead of sloppy lip kisses from my sweet little girl.”
Pennie continued, “I would have packed more spare dummies instead of sucking the dirt off after it was dropped on the ground. Funnily enough it never dawned on me the germs in my daughter's mouth were potentially more harmful than the dirt on the ground. I would get a fresh cup if I was unsure which one was mine. I would wash my hands more often.”
While the family calls Dax a “little legend,” they are taking action to help educate the masses on the risks of CMV.
“What frustrated me the most about our situation is that I could have prevented my cytomegalovirus infection by 50 per cent with just simple measures during pregnancy. We are told not to eat fish with too much mercury, we are warned off soft cheeses, advised to avoid Salad bars and to take our vitamins,” Pennie wrote in a separate Facebook post. “No one tells you there is virus that is so common that most of the population will have contracted it by adulthood. No one tells you it is rife in children.”
For more information on CMV, please visit the National CMV Foundation.