Title: 'Parental Experience - Diagnostic Dilemma '
Track: 7 - Family Perspectives and Support
Keyword(s): cytomegalovirus, diagnostic delimma
Learning Objectives:
  1. Describe my story from a personal perspective regarding the long road to diagnosis with my daughter.
  2. Explain the usefulness of testing for Cytomegalovirus routinely at birth.
  3. Helping other families to hopefully avoid my diagnostic dilemma.


Our daughter was born congenital CMV (asymptomatic ) on 12.28.2011. However as time went on we kept discovering various problems that she was having. She had a brain malformation called Polymicrogyria, she was having multiple seizures daily, was diagnosed with cerebral palsy, had a profound unilateral hearing loss, and a small head (microcephaly). The seizures eventually led to her requiring a lifesaving radical brain operation called a hemispherectomy. After through (and expensive) genetic testing came up with no results my research finally led me to the probability of CMV. I requested our daughter’s newborn bloodspot from the state of Texas to have them retest it for CMV. The Centers for Disease Control tested the bloodspot and confirmed, YES she was born with congenital CMV. I had never known about CMV and our family experienced a horrific time not knowing what was wrong with our daughter, and if there was anything we could do to help her. The worries we faced leading up to her diagnosis were worse than actually accepting the congenital CMV diagnosis. I believe that universal testing for CMV at birth would avoid the diagnostic dilemma that my family faced as well as help other families with hearing loss due to CMV to receive early intervention services in a more timely fashion. I would be honored to display a poster at the EDHI conference in March explaining my personal experience and diagnostic dilemmas faced during our journey to a diagnosis for our daughter. Warm regards, Sandra Schiffli-Salerno
Presentation: Poster_SandraSchiffli-Salerno_1680.pdf

Handouts: Handout_1680SandraSchiffli-Salerno.pdf
CART: CART Transcription is not Available
Sandra Schiffli-Salerno - Primary Presenter,POC
Parent of Child with Hearing Loss
     Credentials: Parent to a child with hearing loss caused by Congenital Cytomegalovirus (CMV)
      I am a proud mother to two daughters, my youngest has a profound unilateral hearing loss due to Congenital Cytomegalovirus.

Financial - No relevant financial relationship exist.

Nonfinancial - No relevant nonfinancial relationship exist.