Living with Fetal cytomegalovirus syndrome
Health problems that can happen when a baby is infected with cytomegalovirus (CMV) before birth.
Understanding Fetal cytomegalovirus syndrome
Most infected babies never develop symptoms. About 10% have health problems or disabilities such as lung, liver, or spleen problems at birth, hearing or vision loss, intellectual disability, seizures, small head size, or lack of coordination. It happens when a mother is infected during pregnancy and passes the virus to the baby through the placenta.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Hearing loss
- Eye inflammation (chorioretinitis)
- Enlarged liver and spleen
- Intellectual disability
- Low platelets or anemia
- Small head size
Not everyone has every symptom. GARD's list comes from the Human Phenotype Ontology.
Diagnosis
- 1Talk with your doctor
Share the symptoms you've noticed, when they started and your family health history. Notes and photos can help.
- 2See a specialist
Specialists who may be involved include brain and nervous system specialists and seizure and epilepsy specialists.
- 3Ask which tests can help
Your care team will decide which exams and tests can confirm the diagnosis.
- 4Connect with expert centers
Epilepsy Foundation may keep lists of experts for this condition.
Care & treatment
- Care team
- Brain and nervous system specialists (neurologists); Seizure and epilepsy specialists (epileptologist)
- Expert care
- Expert lists: Epilepsy Foundation
- Treatment
- GARD doesn't list specific treatments for this condition. Your care team will tailor care to your symptoms.
- Research
- Clinical trials and observational studies may be options. See the research section below.
General information, not medical advice. Your care team makes the decisions.
Everyday life
Living with a rare condition is easier with support.
- Connect with National CMV Foundation and other patient organizations
- Keep notes on symptoms, changes and questions for appointments
- Ask about patient registries that help research
- Look into financial aid and travel resources for care visits
Quick facts
It is caused by a mother being infected with cytomegalovirus during pregnancy and passing the infection to the baby through the placenta.
Also known as: antenatal cmv infection; antenatal cytomegalovirus infection; congenital cytomegaloviral infection; foetal cytomegalovirus syndrome; mother-to-child transmission of cytomegalovirus syndrome
Patient organizations
- National CMV FoundationFetal cytomegalovirus syndrome · United States
- Epilepsy FoundationEpilepsy · United States
You are more than your diagnosis
Perspectives from people navigating life with Fetal cytomegalovirus syndrome.
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- Recruiting studies from ClinicalTrials.gov
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Powered by HealthSpark, our AI chat helper · Study information from ClinicalTrials.gov · Eligibility is confirmed by the study team.
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