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Possible Outcomes

Congenital CMV Outcomes

Babies born with congenital CMV can have widely diverse outcomes, and it is difficult to predict with any degree of certainty their future health or developmental prognosis.
 
Babies born with congenital CMV may be born with birth defects and developmental disabilities, including:

  • Hearing loss
  • Vision loss
  • Mental disability
  • Microcephaly (small head or brain)
  • Intracranial calcifications
  • Lack of coordination
  • Cerebral Palsy
  • Feeding issues / Failure to Thrive (FTT)
  • Sleeping, behavior, sensory issues
  • Seizures
  • Death (in rare cases)

Babies born with congenital CMV can appear to be either symptomatic or asymptomatic at birth.outcomes-spectrum.jpg

Note: This table is not meant to be all-inclusive, each patient and case is distinctive.

Asymptomatic at Birth

At birth, 90% of babies born with congenital CMV will present as asymptomatic, showing no obvious and visible symptoms of the virus. These children are expected to live healthy lives, typically following standard growth and development patterns. Your child may experience minor challenges as he or she develops, so if you are concerned about a mental, behavioral, or physical developmental issue, please consult your child’s pediatrician.

Hearing Loss

Most commonly, approximately 10-15% of asymptomatic babies may experience hearing loss, which can occur at birth or later in life. These children should be closely monitored, even if they pass the newborn hearing screen in the hospital. Hearing loss for asymptomatic children will usually begin in one ear, and then may progress to severe or profound hearing loss in one or both ears.
 
Sometimes, hearing loss can progress over months to several years, throughout childhood, adolescence, and even into young adulthood. Because of this, regular and ongoing audiology screening with a pediatric specialist is recommended to closely monitor hearing loss.

Vision Problems/Loss

Minor vision loss may occur in one to two percent (1-2%) of asymptomatic babies, usually caused by small scars or abnormal pigment layers on the retina that may be present at birth, or may occur later during childhood. Children should have their eyes examined at birth and at regular intervals throughout childhood and adolescence.

Learning Problems

The cognitive outcome, or intelligence and ability to learn, of children born with asymptomatic congenital CMV is typically within normal ranges for the majority of children.

Cerebral Palsy/Muscle Tone/Motor Function

Children born with asymptomatic congenital CMV do not appear to experience major or minor motor or muscle tone difficulties caused by CMV.

Symptomatic at Birth

Ten percent (10%) of babies born with congenital CMV will be symptomatic at birth and may exhibit visible symptoms, such as small size for gestational age, jaundice or yellow color of the skin, a “blueberry muffin” skin rash called petechiae/purpira, and/or an enlarged liver or spleen. These babies may also have a small head size (microcephaly) and may have problems with their blood cell counts and low platelets.
 
Approximately 75% of these babies will have signs of brain involvement and may experience major challenges as they grow, including problems with hearing, vision, nutrition, growth, cognition, learning, and motor/muscle tone.
 
It is best to not make any assumptions, but rather be prepared. Each child is unique.

Hearing Loss

Hearing problems occur in up to 75% of babies with symptomatic congenital CMV. In almost all of these children, the hearing loss will progress throughout the course of their lives. Therefore, hearing evaluations should be performed on a regular basis throughout their lives to detect hearing loss and its progression, and regular speech and language therapy should be a part of a child’s ongoing curriculum.

Vision Problems/Loss

Vision problems or loss may occur in 10-20% percent of children with symptomatic congenital CMV. The types of vision abnormalities are diverse and include scars on the retina and eye muscle tissues. Cortical vision impairment (CVI) or cortical blindness, where the brain improperly translates signals from an otherwise healthy eye, causing permanent visual deficiency, may also occur.
 
Regular visits to the ophthalmologist, and keen awareness about the above potential issues, are extremely important in maintaining and optimizing your child’s vision.

Learning Problems

A child born with symptomatic congenital CMV, specifically with microcephaly and moderate-to-severe brain calcifications, is very likely to have cognition issues. However, this child will be able to learn according to his or her own timeline, so utilizing available educational resources and understanding how to alter your approach to teaching will help provide meaningful assistance to both you and your child.
 
A child with a normal head size at birth and little or only mild brain involvement is very likely to have a normal or near normal ability to learn at the pace of his or her peers.

Cerebral Palsy/Muscle Tone/Motor Function

Problems with increased (hypertonia) or decreased (hypotonia) muscle tone may also occur, especially in the more severely affected children with evidence of early brain and central nervous system involvement. With the help of appropriate specialists, therapists, and mobility gear, these challenges can be addressed to provide greater quality of life and independence for both the parent and the child.

Weight Issues/Feeding Issues

Babies born with symptomatic congenital CMV may be small at birth, but usually with the proper nutrition, will show good “catch-up” growth. However, some children will have feeding difficulties, reflux, food or texture aversions, or other issues that will need to be addressed.

Liver/Spleen Issues

Yellow skin color, red skin lesions and/or enlarged liver and spleen will fade over time, usually within a few weeks to months. This rarely, if ever, causes permanent health problems. If any of the above do not resolve over time, additional testing should be considered.

Seizures/Hydrocephalus

Some children born with symptomatic congenital CMV will experience seizures or hydrocephalus, which should be evaluated and treated by a neurologist experienced in treating children with special needs. The pediatric neurologist or epilepsy specialist may recommend monitoring, including EEG.
 

Noah - New York

The TORCH screen showed that I had been exposed to a primary infection of the Cytomegalovirus. CMV causes the most damage to babies whose mothers contract it for the first time while pregnant. I never knew that because I had a toddler in daycare, that I was at a greater risk for exposure.

— Lynn, Mother