Posts Tagged ‘mental retardation’

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

We’re registered!

Monday, February 22nd, 2010

This April will be the fourth March for Babies that we’re participating in. I’m mfb-logo1proud to say that this has become a tradition. It’s not only a really fun event, but it’s a wonderful way to get the family out and doing something positive for the community.  Together we’re walking because more than 460,000 babies are born prematurely in the U.S. every year, many so small that their lives hang in the balance. These premature babies can suffer lifelong consequences such as mental retardation, blindness, chronic lung disease and cerebral palsy. While most survive, some are so tiny that doctors can′t save them. Please join my family and many others by registering today!

Our badges, widgets and banners are a fun way to show your support of March for Babies. Use them on your blog, Facebook® or MySpace® page and on e-mails to friends to help us get the word out. Click here to get started.

The last weeks of pregnancy really count: Here’s why

Thursday, December 11th, 2008

Scientists have known for a long time that premature birth can lead to problems with a baby’s brain development.

A research team, led by Dr. Joann Petrini of the March of Dimes, has learned that early birth increases the risk of cerebral palsy, developmental delays and mental retardation. The surprising finding is that this risk is true even for babies born as late as 34-36 weeks. The researchers published their study today in The Journal of Pediatrics.

A full-term pregnancy is 39 weeks. But more and more births are being scheduled early for non-medical reasons. Wouldn’t it be nice if the baby could be born when Grandma is in town? Or before the obstetrician goes on vacation?

But early births can cause problems for both mom and baby. If possible, it’s best to stay pregnant for at least 39 weeks.

There are lots of important things happening to your baby in the last few weeks of pregnancy. If you can, give your baby all the time he needs to grow before he’s born.

Those last weeks of pregnancy are hard. You’re tired, you’re not sleeping, you ache. It seems as if you’ve gained a million pounds. As my sister used to say with a long sigh, “I can’t see my feet any more.” But staying pregnant until 39 weeks matters: for you and for your baby.

The March of Dimes Web site has a helpful drawing, showing the difference between the brains of babies born at 35 and 39 weeks. Take a look. And tell us what you do to make those last hard weeks of pregnancy a little easier.