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9/26/2014  |   4:30 PM - 6:00 PM   |  

Parental experience and diagnostic dilemma

Our daughter was born 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 am writing this for future parents, who will walk in my exact shoes in the future so they will not have to endure the pain and diagnostic dilemma that my family faced. I am asking legislatures to pass laws to 1. Educate pregnant women about CMV 2. Test women for CMV during pregnancy 3. Test babies for CMV at birth as part of the newborn screening program I would be honored to display a poster at the CCMV conference in September explaining my personal experience and diagnostic dilemmas faced during our journey to a diagnosis for our daughter.

Sandra Schiffli-Salerno (Primary Presenter), iusandra@live.com;
I am the proud parent of a child with Congenital CMV, Lillian Grace Salerno born on 12.28.2011.

ASHA DISCLOSURE:

Financial - No relevant financial relationship exist.

Nonfinancial - No relevant nonfinancial relationship exist.

Presentation:
335SandraSchiffli-Salerno.pdf

Handouts:
335SandraSchiffli-Salerno.pptx

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