Charting the Cs: Cooperation, Communication and Collaboration. Statewide Professional Development to Support the Workforce and Low Incidence Disability Areas. Charting the Cs Conference 2024. Universal Screening for Congenital Cytomegalovirus (cCMV) in Minnesota: The Importance of Early Identification and Special Education Programming Provided by Gina Liverseed – Minnesota Department of Health, CMV Nurse Specialist Jess Moen – Minnesota Early Hearing Detection and Intervention Statewide Specialist Session Objectives Understand the basics of Cytomegalovirus (CMV) and congenital Cytomegalovirus (cCMV), including strategies treduce the risk of infection. Discuss the implementation of universal cCMV testing in Minnesota. Review the considerations for follow-up and referral of children with cCMV. Understand the impact for a family with a child with cCMV. List resources tsupport early educators working with children whhave cCMV and their families. Describe strategies tpromote early intervention recommended practices. What is CMV? CytoMegaloVirus Widespread and common virus It’s not new! Nearly 1/3 children are infected with CMV by age 5 50-80% of adults are infected with CMV by age 40 Stays in body for life and can reactivate Multiple strains of CMV = potential for reinfection How is CMV Transmitted? Direct contact with body fluids containing the virus saliva, urine, nasal mucus, tears, blood, semen, vaginal fluids, stool, and breast milk Commonly spreads in households and childcare settings Especially from direct contact with the urine or saliva of babies and young children Higher viral loads in bodily fluids than adults Shed virus in secretions for up t1 year People whwork closely with small children or have children in the home are at higher risk of a CMV infection than those that don’t What are the symptoms of a CMV infection? Most healthy people dnot know they’ve had a CMV infection usually asymptomatic sometimes cold/flu-like symptoms generally harmless Infections can be very serious for people whare immunocompromised and for babies whwere infected before birth Why is CMV important? Pregnant people whdevelop an active CMV infection can unknowingly pass the virus ttheir growing fetus When a baby is infected before birth, the infection is known as congenital CMV (cCMV) CMV acquired in utercan damage the brain, eyes, inner ears or other organ systems of the fetus 1/200 babies in U.S. is born with cCMV 1/5 babies with cCMV will experience long-term health concerns Most common infectious cause of birth defects in the U.S. Potential Impacts on Neurodevelopment Cerebral palsy Epilepsy Hearing loss (cCMV = most common cause of non-hereditary hearing loss in childhood) Vestibular dysfunction Intellectual disability Motor planning disorders Behavior disorders Autism Categorization of Severity at Birth 10 % “Symptomatic” ? 1 Sign at birth Small for gestational age Microcephaly Petechiae Jaundice Enlarged liver/spleen 90% “Asymptomatic” Nsigns at birth May still be identified with hearing loss Spectrum of cCMV Sequalae Born Symptomatic Death Miscarriage, stillbirth, infant or child loss Born Asymptomatic Medically fragile Cerebral palsy, seizures, failure tthrive, hearing loss, vision loss Multiple impairments Cerebral palsy, vision loss, hearing loss Developmental delays Cognitive delays, learning issues, feeding and sleeping issues, vision loss, hearing loss Hearing loss Hearing aids, cochlear implants, communication and learning issues, mild vision disorders None Nvisible delays or impairments Severe Moderate Mild Long-term Outcomes in “Asymptomatic” cCMV ? 20% hearing loss by 18 years ? 45% vestibular and gaze stability dysfunction 30% balance difficulties Autism risk Learning disabilities Developmental delays (Pinninti et al., 2019) Treatment Options Antiviral medication Manage existing signs Monitor for new signs Early intervention Family Support Diagnosis of cCMV Must be diagnosed from a sample collected within 21 days of age (congenital vs. post-natal) Urine (gold standard) or saliva tdetect CMV DNA Dried blood spot Blood collected from infants 24-48 hours after birth for newborn screening Testing on current specimens – confirmation with urine recommended Parents can request release of stored specimens for testing 75% sensitivity MN CMV Legislation – The Vivian Act (2021) Education Make information about CMV available thealth care providers, women whmay become pregnant, expectant parents, and parents of infants. Establish a CMV outreach program teducate women whmay become pregnant, expectant parents, and parents of infants. Raise awareness for CMV among health care providers. Newborn Screening Advisory Committee on Heritable and Congenital Disorders treview CMV for possible inclusion on Minnesota's newborn screening panel.  Recommendation approved by Commissioner of Health. Minnesota became the first state tscreen every newborn for cCMV – February 2023. Universal Newborn Screening for CMV Purpose: Identify the infection and any health or developmental concerns as early as possible Offer interventions that can help minimize the impact of the disease Follow-up: Initial medical evaluation and treatment Letter and information booklet from MDH Ongoing hearing monitoring Public health longitudinal surveillance Connections tResources Local Public Health Contact family and complete a nursing assessment tidentify needs and refer tservices Parent Support Pilot program in with MN Hands and Voices for 1:1 support for parents of “symptomatic” children National CMV Foundation Growth and Development Encourage providers tuse Help Me Grow for early intervention referrals Promote the Follow Along Program cCMV Cases (born 2/6/23 – 1/31/24) 185 babies identified with a cCMV infection and in longitudinal follow-up 27% of babies with available follow-up information had signs at birth that may be related tcCMV 11 babies identified with cCMV and sensorineural hearing loss 3 babies had “passed” their initial hearing screening in both ears Wide geographic distribution within the state Understanding the impact for a family with a child with cCMV. "Caring for a child with cCMV can be costly for families not only in terms of out-of-pocket expenses, but alsin terms of caregiver time, relationships, career trajectories, and mental health, tname a few."  Understanding the impact for a family with a child with cCMV (continued 2) Psychological impacts Stress about the past (sense of guilt or self-blame) Present day stressors Anticipatory grief and stress Stigma Caregiver Health Resources for other children Impact on the marital/partnership relationship Social relationships Family financial impacts Cadie's story Cadie describes her early years caring for her daughter with cCMV.  Link tYouTube vide(:39 sec) Cadie (MN DeafBlind Project) Julie's story Julie describes the impact of her daughter, Elenora's, doctor visits in her first year of life. Link tYouTube vide(1:02 min) Julie (MN DeafBlind Project) Available resources tsupport early educators working with children whhave cCMV and their families Help Me Grow referral tlocal school district Refer a Child Developmental Milestones Diagnosed conditions affecting development Part C screening and/or evaluation MDE Part C and Part B Resources (mn.gov) Minnesota Low Incidence Projects Congenital Cytomegalovirus Eligibility Potential eligibility under Part C IDEA with congenital Cytomegalovirus (cCMV) diagnosis A cCMV diagnosis should have continued monitoring for progressive sensory loss. A Common Question Should people whare pregnant or planning tbecome pregnant avoid working with babies with congenital CMV? Answer No. Young children are a common source of CMV and many in school or childcare settings will be shedding the virus already. Practice universal precautions with all children. Tips tReduce your Risk of Getting CMV Wash your hands often, especially after wiping a child’s nose/mouth or changing diapers. Try tavoid contact with saliva when kissing a young child. Avoid putting things in your mouth that have just been in a young child’s mouth. Don’t share food or drink with a young child. Properly clean and disinfect toys, changing tables, and other surfaces that may have a child’s urine or saliva on them. Possible resources tshare with caregivers MN Department of Health: Resources for Parents/Caregivers about Congenital Cytomegalovirus Information about their local program early intervention process Local Public Health MN Hands & Voices Deaf Mentor Family Program MN DeafBlind Project CMV Foundation CMV Social Media Groups  Strategies tpromote early intervention recommended practices Part C Intervention Services for Infants and Toddlers with Sensory Loss: Recommended Collaborative Practices Service Coordination Awareness for all team members that cCMV might manifest as the child grows Shared understanding of the importance of language acquisition and impact of language deprivation Document cCMV on each IFSP or IEP Recognize the complexity of coordinated supports and the strains this can place on families  Jess' story Jess shares their family experiences with early intervention services for her son, Jackson, whwas born asymptomatic with cCMV. Link tYouTube vide(45 sec)  Jess (MN DeafBlind Project)   Questions Reflection Thank you for expanding your awareness and knowledge of cCMV. Gina Liverseed, GGina.Liverseed@state.mn.us Jess Moen, jess.moen@brightworksmn.org  Presentation links and resources: Medical Focus Pinninti S, Christy J, Almutairi A, Cochrane G, Fowler KB, Boppana S. Vestibular, Gaze, and Balance Disorders in Asymptomatic Congenital Cytomegalovirus Infection. Pediatrics. February 2021; 147 (2): e20193945. https://doi.org/10.1542/peds.2019-3945 Zappas MP, Devereaux A, Pesch MH. The Psychosocial Impact of Congenital Cytomegalovirus on Caregivers and Families: Lived Experiences and Review of the Literature. International Journal of Neonatal Screening. 2023 May 26;9(2):30. https://doi.org/10.3390/ijns9020030 Minnesota Department of Health Early Hearing Detection and Intervention Section 4: Audiology Guidelines for Infants with Congenital Cytomegalovirus.   https://www.health.state.mn.us/docs/people/childrenyouth/improveehdi/audiogdlnccmv.pdf Presentation links and resources: Education Focus Help Me Grow, https://helpmegrowmn.org/HMG/index.htm Minnesota Department of Education Part C and Part B Resources, https://education.mn.gov/MDE/dse/early/ecse/bc/ Part C Intervention Services for Infants and Toddlers (Birth-Age 3) with Sensory Loss: Recommended Collaboration Practices,  https://education.mn.gov/mdeprod/groups/educ/documents/hiddencontent/cm9k/mdm0/~edisp/prod034482.pdf  Minnesota Low Incidence Projects Congenital Cytomegalovirus,  https://mnlowincidenceprojects.org/cCMV/index.html  Minnesota Department of Health, Information for Child Care and Education Professionals Tips tReduce Your Risk of Getting CMV  https://www.health.state.mn.us/diseases/cytomegalovirus/childcareeduc.html National CMV Foundation, https://www.nationalcmv.org/ Early Intervention Flyer,  https://www.nationalcmv.org/getattachment/Resources/educational-downloads/downloads/Download-2/Early-Intervention-Flyer.pdf.aspx?ext=.pdf Presentation links and resources: Family Focus Minnesota Department of Health Resources for Parents, Families, and Caregivers about Congenital Cytomegalovirus,  https://www.health.state.mn.us/diseases/cytomegalovirus/families.html Minnesota Hands & Voices, https://www.lssmn.org/mnhandsandvoices/ Minnesota Deaf Mentor Family Services,  https://www.lssmn.org/services/families/deaf-hard-of-hearing/mentor-services Minnesota DeafBlind Project, https://www.dbproject.mn.org/ National CMV Foundation, https://www.nationalcmv.org/