Congenital Cytomegalovirus (CMV) Questions and Answers

Congenital (present at birth) Cytomegalovirus (CMV) Questions and Answers

See below for the answers to the following questions:

1.      What is cytomegalovirus(sī-to-MEG-a-lo-vī-rus), also referred to as CMV?

2.      Is CMV "contagious?  How do people "get" CMV?

3.      Who does CMV Harm?

4.      How common is congenital (present at birth) CMV in the United States?

5.      What are the symptoms of congenital CMV?

6.      What is the cost of caring for children disabled by congenital CMV?

7.      How do the birth defects caused by congenital CMV compare to the other well-known causes of disabilities such as Down syndrome and toxoplasmosis?

8.      Can you prevent congenital CMV in any way?

9.      Are pregnant women told about CMV? If not, why not?

10.  Can children who appeared healthy at birth have disabilities a year later as a result of congenital CMV? Can you still determine if congenital CMV was the cause of these disabilities if not tested for it a birth?

11.  Can you treat CMV in any way?

12.  What percent of women of child-bearing age know about CMV?

13.  Knowing what you do, what would you do differently before becoming pregnant and during pregnancy?

 

 

Who I am and how congenital CMV affected my family:

I am the Congenital CMV Foundation parent representative and author of Anything But a Dog! The perfect pet for a girl with congenital CMV (cytomegalovirus). OB/GYNs didn’t tell me how to prevent CMV until after my severally brain-damaged daughter Elizabeth was born. Then I learned that those working in daycare, or have a child in daycare, are at a higher risk for catching it as preschoolers are the majority of carriers. Women working in daycare, or who have a child in daycare, are still not routinely warned of the precautions to take when caring for small children.

In milder cases, children born with congenital CMV may lose hearing or struggle with learning. But Elizabeth's case was not a mild one. She was quadriplegic from cerebral palsy, cordically blind, gradually losing her hearing, and suffered from frequent pneumonia, major surgeries and ever-worsening epilepsy. She died during a seizure at 16.

I support the passing of Connecticut's

HB 5147. Medical doctors, including a Yale professor and other medical professionals and parents, support the passing of this bill as well.

 

 

1.      What is cytomegalovirus(sī-to-MEG-a-lo-vī-rus), also referred to as CMV?

·         CMV, or cytomegalovirus is a common virus. Like chicken pox, it’s in the herpes family.

·         Most infections with CMV are “silent,” meaning most people who are infected with CMV have no signs or symptoms.

·         Between 50% and 80% of adults in the U.S. are infected with CMV by 40 years of age

·         CMV is a virus that is found in all parts of the world. For someone with HIV or AIDS, CMV can cause retinitis (blurred vision and blindness), painful swallowing, diarrhea, and pain, weakness, and numbness in the legs.

 

2.      Is CMV "contagious?  How do people "get" CMV?

·         Person to person contact (kissing, sexual contact, getting saliva or urine on hands and then touching eyes, or the inside of nose or mouth)

·         Infected pregnant women can pass the virus to their unborn babies

·         Blood transfusions and organ transplantations

 

3.      Who does CMV Harm?

·         CMV can cause disease in unborn babies

·         CMV may cause severe and occasionally life-threatening disease in immunocompromised persons (meaning people with weakened immune systems), such as:

·         Organ and bone marrow transplant recipients,

·         Cancer patients

·         Patients receiving immunosuppressive drugs, and

·         HIV-infected patients

 

4.      How common is congenital (present at birth) CMV in the United States?

·         About 1 in 150 children is born with congenital CMV infection

·         Each year, about 30,000 children are born with congenital CMV infection

·         Every hour, congenital CMV causes one child to become disabled

·         About 8,000 children each year suffer permanent disabilities caused by CMV

·         About 1 in 5 of congenitally infected children is permanently disabled.

·         About 1 in 750 children is born with or develops permanent disabilities due to CMV

 

 

For every 1000 pregnancies that result in a LIVE birth, about 1 to 2 babies will have permanent CMV-related problems.

 

5.      What are the symptoms of congenital CMV?

Temporary Symptoms
Liver problems
Spleen problems
Jaundice (yellow skin and eyes)
Purple skin splotches
Lung problems
Small size at birth
Seizures

Permanent Symptoms or Disabilities
Hearing loss
Vision loss
Mental disability
Small head
Lack of coordination
Seizures
Death

6.      What is the cost of caring for children disabled by congenital CMV?

According to an article co-authored by the CDC’s Dr. Cannon, “The direct annual economic costs of caring for these children are estimated at $1-2 billion…by missing prevention opportunities, we in the medical and public health communities are washing our hands of the congenital CMV disease epidemic.”

7.      How do the birth defects caused by congenital CMV compare to the other well-known causes of disabilities such as Down syndrome?

8.      Can you prevent congenital CMV in any way?

·         Wash hands often with soap and water for 15-20 seconds, especially after wiping runny noses, changing diapers, picking up toys, etc. If soap and water are not available, use alcohol-based hand gel.

·         Use soap and water or a disinfectant to clean hard surfaces that have been contaminated by secretions (the virus lasts approximately 30 minutes on surfaces)

·         Don’t share food, drinks, or eating utensils with young children

·         Don’t kiss young children on the lips—give them a big hug and a kiss on top of the head.

·         If you work in a day care center, limit close contact with children younger than 2½ years of age, especially if you've never been infected with CMV or don't know if you've been infected.

 

9.      Are pregnant women told about CMV? If not, why not?  

·         Less than half of OB/GYNs surveyed said they counseled their patients on how to prevent CMV infection (surveyed by the American College of Obstetricians and Gynecologists in 2007)

·         OB/GYN’s Don’t realize the prevalence of congenital CMV. In the article, “Washing our hands of the congenital cytomegalovirus disease epidemic,” Drs. Cannon and Davis state: “The virtual absence of a prevention message has been due, in part, to the low profile of congenital CMV. Infection is usually asymptomatic in both mother and infant, and when symptoms do occur, they are non-specific, so most CMV infections go undiagnosed.”

·         An OB/GYN quoted in FitPregnancy magazine (June/July '08) said, "The list of things we're supposed to talk about during women's first visit could easily take two hours and scare them to death.”

 

10.  Can children who appeared healthy at birth have disabilities a year later as a result of congenital CMV? Can you still determine if congenital CMV was the cause of these disabilities if not tested for it a birth?

To know if a child has disabilities caused by congenital CMV, they would have needed to be tested for it by three weeks of age.

11.  Can you treat CMV in any way?

CMV infection in newborns can be treated with ganciclovir by IV or valganciclovir by oral route - treatment reduces hearing loss progression and improves growth and head size/brain growth and improves developmental milestones.  It is now recommended for newborns with symptomatic CMV disease at birth and even those that appear healthy yet fail their newborn hearing screens b/c deafness. Valganciclovir is recommended by CMV experts for symptomatic newborns now, it is well tolerated, with side effects of low blood counts in 20% that is monitored for, and is covered by most insurance plans and Medicaid now.

CMV infections in other patient with immune dysfunction can be treated as well.

Pregnant women with primary CMV infection during pregnancy can receive a controversial hyperimmune globulin treatment to protect the fetus from CMV, or enroll in a clinical trial to assess whether or not this treatment is effective:  A Randomized Trial to Prevent Congenital Cytomegalovirus (CMV)

12.  What percent of women of child-bearing age know about CMV?

 22% of women surveyed.

 

13.  Knowing what you do, what would you do differently before becoming pregnant and during pregnancy?

I would have a blood test to determine if I had an active infection or if I had immunity to the disease from a prior infection. If I had an active infection, I would wait for a doctor to clear me to get pregnant. If I had never had it before, I would not work with young children in daycare and I would be careful not to kiss my toddler around the mouth or share food with  her.

I wish I had heard of CMV and that it causes miscarriages and birth defects before or with my pregnancy. If I had heard of CMV, I wish I had known about the currently recommended CMV precautions that may reduce the risk of transmission of CMV to me during pregnancy from toddlers and others close to me in my family and in the day care or home care setting.

 

I wish I had not first heard of CMV after the birth of my child.

 Everyone has heard not to change the kitty litter when pregnant (toxoplasmosis). I wish everyone would hear how to prevent congenital CMV by not kissing babies around the mouth or sharing food.


The prevalence of congenital toxoplasmosis is estimated to be between 1 of 12,000 live births [based on Massachusetts newborn screening data-the only state or one of the few states that screens for toxoplasmosis at birth] to as high as 5 per 1,000 births in the US. 

 

It is much less frequent than congeital CMV infection and congenital CMV disease.