Perhaps no one is able to give greater insight into living with congenital CMV than the parents of those children and adults born with this disease...
Every year in the United States alone, thousands more children are born with congenital CMV. Their parents experience an unspeakable fear and pain as they learn more about this disease and its effects and as they piece together what life will look like for their children and their families.
Please read below for their stories.
Featured CMV Parent's Story - Riley's Story
"So the journey begins...well it really began last Wednesday..."
November 9We had been sent over to a specialist in Pensacola because my doctor said Riley's head was measuring a touch small, nothing was wrong, but just a precaution to have it checked out. We thought we would have an ultrasound...they would also say no big deal and we would turn it into a baby shopping day!
After a long ultrasound...we meet the doctor. He started to tell us of some abnormalities that are showing up that alone are nothing, but with so many little things such as Ascites in several areas, signs of anemia and extra volume in umbilical cord, he was concerned... Read more
More CMV Parents' Storiesborn August 1, 2001
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Savanah - Utah
born March 25, 2004
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Bailey - Alaska
born September 30, 1995
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Riley - Florida
born and passed away November 27, 2009
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Daniel - Georgia
born July 2, 1983
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Gracie - Connecticut
born March 2, 2009
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Liam - Virginia
born February 6, 2007
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Chloe - Michigan
born December 16, 1998
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Zachary - Texas
born May 9, 2009
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Krystal - Utah
born July 9, 1995
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Michael - Texas
born December 17, 2003
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David - Florida
born March 3, 1997
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Avery - Minnesota
born June 5, 2008
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Trenton - Missouri
born July 26, 2006
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Portia - Michigan
born August 17, 2007
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Jeb - Wisconsin
born December 24, 1999
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Joshua - New York
born March 28, 2008
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Katie - Indiana
born August 30, 2006
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Isaiah - Nebraska
born December 28, 2001
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Danny - Missouri
born March 11, 2008
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Noah - New York
born October 11, 2004
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Leah - Tennessee
born July 17, 2008
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Dalen - Mississippi
born May 25, 2009
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Rachael - Tennessee
born September 4, 1995
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Landon Joe - North Carolina
born August 11, 2007
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Kristen - New York
born April 5, 1982
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Andrew - Missouri
born March 19, 2009
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Miranda - Florida
born 2008
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Aydon - Alabama
born July 2, 2008
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Bryson - Texas
born February 25, 2009
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Gabriela - California
born July 14, 2005
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born December 13, 2008
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Riley Jean - Florida
born October 30, 2008
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Laney - Texas
born April 20, 2008
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Jamie - United Kingdom
born January 9, 2007
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Austin - Florida
born October 21, 1992
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Kyra - Kentucky
born March 27, 2002
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Cassie - Wisconsin
born September 20, 1988
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Matthew - Michigan
born August 30, 2008
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Ruth Elyse - Illinois
born August 28, 2008 - stillborn
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Elias David - Arizona
born October 30, 2008 - stillborn
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Jeremiah - Virginia
born June 22, 2005
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Kaiden - Australia
born July 4, 2007
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Audrey - North Carolina
born July 26, 2006
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Kaden - Pennsylvania
born January 1, 2006
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Leah - Oregon
born January 15, 2008
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Colby - Georgia
born September 14, 2006
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Jaxon - Alabama
born November 25, 1998
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Brayden - Pennsylvania
born July 12, 2006
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Jacob - Virginia
born September 2, 2006
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Joshua Daniel - Nevada
born February 8, 2007
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Elizabeth - New York
born December 18, 1989 - passed away February 9, 2006
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Tobias - Florida
born January 12, 2008
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George - Virginia
born July 30, 2005 - passed away April 17, 2007
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Katelyn Marie - Arizona
born November 6, 2003
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Riley and Rachel - California
born August 9, 2003
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Perhaps no one is able to give greater insight into living with congenital CMV than the parents of those children and adults born with this disease. Click here to read their stories.
Lisa Saunders
"Sixteen years after her birth, I awoke feeling so proud of Elizabeth on her birthday. She had fought hard to stay with us in the land of the living, surviving several bouts with pneumonia, seizures and surgeries". ... more
Melissa Prosper
"For the rest of my pregnancy I got bounced around from specialist to specialist for all kinds of testing. I had MRI's and ultrasounds and with all of them came more bad news. It seemed like every doctor had no hope for him"... more
Rosemary Carter
"Two days after his birth, he failed his newborn screening in both ears. He didn't like being held because he liked to bend his back backwards a lot. He failed all hearing tests and we did an ABR"... more
Sharon Caldwell
"As a new mom I believed she was just a little slow and she would catch up (she was 3 months) but I did as the doctor wanted and that is when all the tests began"...more
more parents stories Share your CMV Story
Please include details about you and your child's experience with congenital CMV. You're encouraged to include information about your pregnancy, delivery, diagnosis, prognosis and how your child is doing. Feel free to write about your thoughts and feelings as you have raised your CMV child.
Your experiences will encourage and strengthen other CMV parents and will offer the public invaluable insight about the CMV virus. These compelling stories can be the key to positive change - policymakers, the press, and other key influencers will learn more about congenital CMV and its profound impact, largely unseen around the United States and the world, until now...
Send your story to: email@stopcmv.com.
Real Story of Congenital CMV"Imagine giving birth to a baby and finding that your baby was exposed to a dangerous virus during pregnancy.
This virus, Cytomegalovirus (CMV), could have a questionable impact on your child’s development and prognosis and you have no outlook as to what your child’s life and medical situation would be. You were never informed of this virus by your OB/GYN while pregnant and were never told to take any precautionary measures to prevent exposure. You blame yourself for allowing harm to come to your unborn child and you wonder how and where you may have acquired the virus and what you could have done to prevent it. Upon learning that you likely acquired the virus from small children, even possibly your own small children, you blame yourself for not being more careful but you also slightly resent your other children for indirectly harming your newborn.
When you research the internet and search for information about CMV, words like "herpes" and "HIV" come up in many of your searches and you feel additional shame and guilt wondering what you did to harm your baby. When you read about CMV, you read in pregnancy and parenting forums that it is "rare" and "uncommon", coupled side by side with data from medical sites, putting statistics closer to 1 in 150..."