Posts Tagged ‘childhood deafness’

A compelling personal story about CMV

Tuesday, June 15th, 2010

Brendan and his momOur guest post today is from Tracy McGinnis, mom to Brendan and founder of the CMV Foundation.

THIS is one of the leading cause of cerebral palsy in children
THIS is the leading cause of non-hereditary deafness in children
THIS is the second leading cause of mental retardation in children
THIS is the most common infection present at birth
THIS permanently disables a child every single hour in America
THIS kills approximately 400 babies each year in America
THIS is congenital CMV, cytomegalovirus.
THIS….is the story of my precious son, Brendan and our lives with congenital CMV …

My son Brendan was born in 2004, the picture of perfect health. After having four miscarriages, holding this beautiful miracle in my arms was a dream come true! During the few days after his birth, they ran the newborn hearing screen on Brendan numerous times, continually getting a “fail” on his right ear. I was assured it must be water in his ear.  After a week of failed screens they completed an ABR, auditory brain response, hearing test. This was the beginning of life as I knew it being forever changed. The ABR showed his hearing loss was neurologically based. I was crushed thinking my son would be deaf in one ear. Little did I know that this was just the tip of the iceberg. At his two-week newborn check-up, the pediatrician noted that Brendan’s head size was very small and told me that combined with the hearing loss, we needed to test him for toxoplasmosis, rubella, and CMV. It was the longest 10 days of my life as I awaited the test results. Then the news came: it was CMV. The doctor spoke to me over the phone of cerebral palsy, seizures, deafness, blindness, mental retardation, and more.

What has occurred in the years since then are a number of tests, procedures, and surgeries. Brendan’s brain incurred severe injury from this devastating virus. He has calcifications, a portion of his left brain did not develop, microcephaly, and slightly widened ventricles. He now sees a number of specialists. Brendan is severely disabled both physically and intellectually. He cannot crawl, sit up, or walk. He is nonverbal, has seizures, is fed via a G-button, and has severe cerebral palsy. He has trouble sleeping, common with congenital CMV.  He receives physical, speech and occupational therapies 4 times a week.

Brendan’s diagnosis changed my world forever. However, it also gave me a new sense of purpose as I am determined to do all I can to eradicate CMV. I don’t want to see any other babies be born with this dreadful virus and have to suffer the hardships that my son goes through daily. So, in 2007 I established the first non-profit foundation dedicated to raising awareness of congenital CMV. Today, we remain the only non-profit foundation in the world that is also dedicated to financially supporting CMV vaccine research.  I named the foundation in honor of my son. The Brendan B. McGinnis Congenital CMV Foundation is a tribute to him, as he is my inspiration. Our mission is to raise awareness, to support CMV vaccine research, and to affect change in the medical community so that physicians will begin to test women for CMV prior to pregnancy. With a Board of Directors comprised of leading CMV experts and clinicians, we are doing all we can to reach our goal. Congenital CMV is more common than Down Syndrome, Spina Bifida, or Fetal Alcohol Syndrome. It is not rare: 1 in 150 babies are born with congenital CMV.

I don’t want to see this happen to any other babies. I don’t want any other moms to feel my heartache. I want women everywhere who are considering pregnancy to learn about CMV! Please go to our website to learn about CMV and the measures you can take to help prevent congenital CMV. Until a vaccine is found, women must do all they can to protect their unborn babies from this common but life-altering virus by following the extra hygienic precautions recommended by the CDC. To contact us or to help us raise awareness of CMV, please write to us at: mcginnis@cmvfoundation.org