A compelling personal story about CMV

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

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6 Responses to “A compelling personal story about CMV”

  1. Annette Estes Says:

    I’m afraid Ms. McGinnis failed to mention a few things. Tracy is one of the most loving and caring people I have ever known. As a single mom of Brendan and Declan, it would be very easy to sit back and focus on the boys and herself, spend more time working on her career, or even just taking it easy. In reality, there is nothing the foundation can do to help her own son Brendan. There is no cure, no hope for a cure, no financial support for Brendan. But, because Tracy remembers the way she felt upon finding that her son was disabled due to a virus that “nobody told her about”, she has made it one of her missions to make sure that all moms are aware of this life changing and often deadly virus before becoming pregnant. She spends her days working to support her kids and her nights and weekends working to make life better for others. If only we could all be the woman that Tracy McGinnis is. She has changed the face of Congenital CMV Awareness. Many others have come along and tried to do the same, but will never be able to be the first. Tracy is the original strong, fiesty, passionate, individual who made the decision to make a difference.

    I am the Nana of Cody, another child who has been severely and permanently disabled as a result of this hideous virus. The story is a little different, but with the same results. A beautiful child, with a beautiful personality who is unable to crawl, walk, talk, has severe Cerebral Palsy and proufound hearing loss in both ears. He is the joy of my life. Until I heard Tracy speak at the 2008 Congenital CMV Conference in Atlanta, GA., I thought I was alone. But now after getting to know Tracy, I know I’ll never be alone.

  2. Lindsay Says:

    Hi Annette – Thanks for your comment. Tracy is amazing and and I’m so glad you connected. It means the world to know you’re not alone. We’ll keep spreading the word.

  3. Christi Abercrombie Says:

    I went throught the same experience you did, but it was 1989 when my daughter Annie was born. She was full term, only 4lb 13oz. and spent her first week in NICU. The CMV positive result came back after 8 days, and nobody could tell me anything, except that there was the possibility of CP, deafness, blindness, and severe brain damage. Her first CAT Scan was a 5 months old, when they felt she could be sedated safely, and then I got the call…severe brain damage. Thank God for our county/state resources from Social Services, a caring Pediatrician, and especially her Special Education teachers. Annie is now 21 and I am constantly looking for resources to find her some type of meaningful work/living arrangements. She is happy, but needs the fulfillment of some sort of job now that her public special education schooling is about to end. I feel that I am at the edge of that abyss again, what direction do I go?

  4. Sherri Says:

    Hello, I am a new grandmother to Angel, she has been diagnosed with CMV, I am doing research as to ways to get her the help that she will need in life, she is still in NICU, her brain did not develop fully during birth, and we are at a total loss as to which direction to start looking for helpful advice, or what other parents have had to go through. Any one that can give us advice it would be so appreciated. Thank you

  5. Lindsay Says:

    Hi Serri – I’m sorry to hear about Angel’s diagnosis. Please be sure to go to http://www.cmvfoundation.org/ to connect with other families. I’m sure you will receive great advice and support there.

  6. Carlynn Alt Says:

    I am late to his post, but while cleaning out some kitchen cupboards I came across an article from Redbook magazine in 2001 about Annie and Christi Abercrombie (post above) that I had saved. At the time my daughter Isabelle was 6 years old, and I read with interest the similaries that Annie had with Isabelle. As Isabelle is now a 15 year old teenager, I wanted to try to reconnect with others who have waded through these waters before me. I also had IUGR and Isabelle was diagnosed at birth wih CMV. We did try experimental ganciclovir ( antiviral med ) with her at birth -with I think some good outcomes. She is not deaf, but does have a host of cognitive and physical issues. I would like to encourage the exploration of the use of ganciclovir for any congenial CMV child for several months at birth until their own immune system has kicked in. Anyone out there please contact me, I am a health care professional, in addition to being Isabelle’s Mom. Looking forward to ideas on how to navigate into young adulthood. Carlynn Alt kcalt@sbcglobal.net.
    Thank you