Clinical trial puts congenital CMV in spotlight for pregnant women in Colorado

AURORA, Colo. - It's a virus that could strike all of us, but it can be most damaging for an expecting mother's baby.

"It's been extremely heartbreaking to be honest with you. I try to cherish every moment I have with him," said Tracy McGinnis.

In 2004, McGinnis was sickened by congenital cytomegalovirus, or CMV, a virus that causes mild or no symptoms in most patients because it “hides” in a person’s body, according to the Centers for Disease Control, or CDC.

Unlike a cold, CMV is not passed by sneezing or coughing. Rather, it can be spread through contact with bodily fluids, like saliva or urine, of young children.

Many who are infected with CMV complain of symptoms like a fever, sore throat or swollen glands. It is these vague symptoms that can make it difficult for doctors to diagnose properly. 

But when a pregnant mother is infected with CMV, it can cause problems for the unborn child. CMV can be passed to the fetus and cause permanent health problems.

"During week six and seven of my pregnancy, I got a fever; I was sick," said McGinnis.

Her illness was likely a primary or initial case of CMV, meaning her body had no built-up antibodies to protect her unborn baby. 

"CMV crosses the placenta from the mother and attacks the system of the developing baby.  It primarily targets the brain," McGinnis said.

In McGinnis' situation, the absence of antibodies allowed the virus to spread to her son, Brendan, who is now 8, and was born with severe brain damage. 

"He has severe cerebral palsy; he's deaf in one ear; he has feeding and digestive issues and his neurological status is really the big concern at the moment," said McGinnis.

According to the CDC, 30,000 children in the United States are born with congenital CMV infections each year.

CDC information about congenital CMV: 

-- Brendan’s Therapy --

Brendan goes to the Neurophysiology and Sleep Center at Children's Hospital in Aurora for brain activity testing every time his condition worsens. 

His fragile body,  which only weighs 75 pounds, lies in a hospital bed as a medical technician places 25 electrodes to his tiny head.  The cables are connected to a computer which will test his brain for seizure activity.

Brendan has become a pro with the testing, smiling as his head is wrapped with medical gauze.

As the test begins, the lights are dimmed in Brendan’s hospital room and a series of strobes flash in the dark room.  The test could take up to 24 hours, but is necessary in helping doctors determine whether or not new medications are helping to stabilize his seizures.

His mother said recently Brendan’s brain seizures have increased, one of the symptoms of a child infected with CMV.

"Every time he goes into a seizure, I have to wonder is this THE seizure?  You never know," said McGinnis.  She has been told by doctors that Brendan may not live past his teens.

“If he sees 20, I will feel extremely blessed,” said McGinnis.


-- National Study Giving Hope For Expecting Mothers --

A nationwide clinical trial is hoping to prove that treating infected pregnant women with CMV antibodies will reduce the number of children born with congenital CMV.
Dr. Ronald Gibbs, professor of Obstetrics and Gynecology at the University of Colorado School of Medicine, told 7NEWS that so far 1,200 Colorado women have been screened to participated in the trials.

"It's one of the premier ways we advance the care of pregnant women," said Gibbs during a recent interview.

The Eunice Kennedy Shriver National Institute of Child Health and Human Development is sponsoring the trial taking place at 10 universities across the United States.  

Gibbs is overseeing the NICHD trial on the Anchutz Medical Campus in Aurora.  
Despite pointing out that CMV represents one of the most common infections in pregnancy and can lead to mild or even severe consequences, Gibbs is careful to keep the risks in proper perspective.  He points out that most pregnancies will develop normally even in the presence of an acute CMV infection.

"It's about 10% of those infants who are infected that will show evidence of infection at birth.  The vast majority go on to develop normally," said Gibbs. 

He points out that no professional organization currently recommends routine testing for CMV. 

"First, it is infrequent, and second, we don't have an approved or recommended therapy. But depending on what happens with this trial, that whole story could change.  This is one of the reasons we are privileged to live the US where ethical research can be done and advance the care of patients," said Gibbs.

More about the clinical trial:

-- Brendan’s Life Helping Others --

McGinnis has turned her sorrow and frustration to helping other expecting mothers by creating a nonprofit named after her son, 'The Brendan B. McGinnis Congenital CMV Foundation.’

The foundation is aimed at spreading awareness around the world about CMV and effect change in the medical community.

McGinnis hopes her foundation will continue to raise funds to support medical research, like that happening in the NICHD clinical trial, and ultimately lead to a widely administered CMV vaccine.  

While a future vaccine may be too late for Brendan, his mom is optimistic about what Dr. Gibbs and his team uncover in their research.

"We just need to eradicate this virus," said McGinnis.

More about the foundation:

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