Newborn Screening
Congenital CMV affects one in every 200 babies born each year (approximately 30,000 children annually), making it the most common
congenital viral infection in the United States. Of that statistic, one in every five children born with congenital CMV will develop permanent health problems (roughly 6,000 children) with as many as 400 infant deaths annually.
Congenital CMV infection is arguably the most common preventable cause of neonatal disability in the United States. More children will have
disabilities due to congenital CMV than other well-known infections and syndromes, including Down Syndrome, Fetal Alcohol Syndrome, Spina Bifida, and Pediatric HIV/AIDS.
Nearly 90% of infants born with congenital CMV appear healthy at birth, and the vast majority will not have any visible symptoms or long-term issues. Health problems or disabilities caused by congenital CMV infection can sometimes appear roughly two or more years after birth.
Infants and children who are infected with CMV after birth rarely present with symptoms and will not be exposed to any permanent problems or disabilities.
Newborn Testing and Diagnosis
Presently in the United States, there is no standard of care or routine protocols regarding screening newborns for congenital cytomegalovirus at birth. If a baby presents as symptomatic, meaning the baby has obvious physical symptoms of being born with a potential viral infecton, congenital CMV (cCMV) can be diagnosed by testing a newborn baby's saliva, urine, or blood using polymerase-chain-reaction (PCR) testing
. Ideally these specimens are collected for testing before twenty-one days of life in order to confirm a diagnosis of congenital CMV infection because after three weeks, it is hard to determine if the baby could have contracted the infection through nursing or by exposure to siblings or others who may be
shedding, or passing, the virus.
As of November 2018, the US Food and Drug Administration (FDA) has approved marketing of a new test for newborns less than 21 days of age - the Alethia CMV Assay Test System - which detects CMV DNA from a saliva swab. Results from the test are intended to be used in tandem with other diagnostic tests and clinical information to quickly identify the virus and help health care providers determine the best approach for the child.
If your baby is older than three weeks, families interested in obtaining their baby's dried blood spot (DBS) for testing should ask their physician to call the appropriate contact per this
Newborn Blood Spot Screening list by state. There are at least two Clinical Laboratory Improvement Amendments (CLIA) validated labs that can run DBS CMV PCR assays, including ARUP at the University of Utah, and the University of Minnesota Center for Infectious Diseases and Microbiology Translational Research.
In June 2017, an informal, global group of stakeholders conferred on and published a consensus document which states that "consideration must be given to universal neonatal screening for cytomegalovirus to facilitate early detection and intervention for sensorineural hearing loss and developmental delay, where appropriate. The group agreed that education and prevention strategies for mothers were beneficial, and that recommendations will need continual updating as further data become available."
In the absence of established universal screening of newborns, hearing targeted early cytomegalovirus (HT-CMV) screening is taking off as an appropriate approach to determine whether CMV is the cause of a child's hearing loss. In July 2013, Utah became the first state to implement this screening approach in the United States. A CMV PCR or culture is performed whenever an infant fails his/her newborn hearing screen before 3 weeks of age.
If the testing for CMV is positive and if the child is later found to have hearing loss, this approach establishes a diagnosis for the hearing loss and avoids future uncertainty or other unnecessary testing (for example, genetic). A definitive diagnosis of CMV may provide the family an opportunity for antiviral therapy and focused surveillance hearing testing since these children are typically at-risk for further hearing loss.
Since the Utah
mandate has been enacted, several other states or hospitals have considered or adopted most or portions of this approach.
The following is a list of birth hospitals that are currently providing hearing targeted early CMV screening.
California
Kaiser Permanente: San Francisco
Kaiser Permanente: Oakland
Kaiser Permanente: San Leandro
Kaiser Permanente: Roseville
UCSD Hospital
UCSF Betty Irene Moore Women's Hospital
Colorado
University of Colorado Hospital Birth Center
Connecticut
Birth & Beyond (home birth practice)
Bridgeport Hospital
Yale New Haven Children's at Bridgeport Campus (NICU)
Bristol Hospital
Connecticut Children’s Medical Center: Hartford (NICU)
Connecticut Children’s Medical Center at UConn Health Center (NICU)
Charlotte Hungerford Hospital
Connecticut Childbirth and Women's Center (birthing center)
Danbury Hospital
Day Kimball Hospital
Greenwich Hospital
Griffin Hospital
Hartford Hospital
Johnson Memorial Hospital
Lawrence & Memorial Hospital
Manchester Memorial Hospital
Middlesex Hospital
Midstate Medical Center
Norwalk Hospital
Sharon Hospital
St. Francis Hospital and Medical Center
St. Mary's Hospital
St. Vincent's Medical Center
Stamford Hospital
The Hospital of Central Connecticut
UConn Health Center: John Dempsey Hospital
Waterbury Hospital
William W. Backus Hospital
Windham Community Memorial Hospital
Yale New Haven Children's Hospital
Yale New Haven Hospital
Yale New Haven Hospital: Saint Raphael Campus
Delaware
Christiana Hospital
Hawaii
Kaiser Permanente: Moanalua, Honolulu
Massachusetts
Beth Israel Deaconess
Boston Children’s Hospital
Brigham and Women’s Hospital
Massachusetts General Hospital
University of Massachusetts Medical Center
Minnesota
Fairview: Minneapolis
Fairview/Ridges Hospital: Burnsville
Fairview/Southdale Hospital: Edna
University of Minnesota Medical Center/Fairview: Minneapolis
New York
Huntington Hospital, Northwell Health
Katz Women's Hospital at Long Island Jewish Medical Center, Northwell Health
Katz Women's Hospital at North Shore University Hospital, Northwell Health
Lenox Hill Hospital, Northwell Health
Southside Hospital, Northwell Health
Ohio
Cincinnati Children’s Hospital
Texas
Texas Children’s Hospital
Children’s Health: Dallas
William P. Clements Jr. University Hospital: Dallas
Texas Health Presbyterian Hospital: Dallas
Parkland Hospital
Utah
Alta View Hospital
American Fork Hospital
Ashley Regional Medical Center
Bear River Valley Hospital
Beaver Valley Hospital
Blue Mountain Hospital
Brigham City Community Hospital
Cache Valley Specialty Hospital
Castleview Hospital
Cedar City Hospital
Central Valley Medical Center
Davis Hospital and Medical Center
Delta Community Medical Center
Dixie Regional
Fillmore Community Medical Center
Garfield Memorial Hospital
Gunnison Valley Hospital
Heber Valley Medical Center
Intermountain Medical Center
Jordan Valley Medical Center
Jordan Valley West Medical Center
Kane County Hospital
Lakeview Hospital
LDS Hospital
Logan Regional Hospital
Lone Peak Medical Center
McKay-Dee Hospital Center
Moab Regional Hospital
Mountain Point Medical Center
Mountain View Hospital
Mountain West Medical Center
Ogden Regional Medical Center
Orem Community Hospital
Park City Medical Center
Primary Children's Hospital
Riverton
Salt Lake Regional Medical Center
San Juan Regional Medical Center
Sanpete Valley Hospital
Sevier Valley Medical Center
St. Mark's Hospital
Timpanagos Regional Hospital
Uintah Basin Medical Center
University of Utah
Utah Valley Regional Medical Center
Virginia
Sentra Norfolk General Hospital
Sentra Leigh Hospital
Wisconsin
Marshfield Medical Center
CANADA
BC Women's Hospital and Health Centre
If you learn that you became infected with CMV during your pregnancy, talk to your pediatrician about having your baby tested for congenital CMV. The testing is relatively quick, simple, and painless, and is covered under most insurance policies.