Katie’s Story"My name is Katelyn Marie I was born November 6th, 2003..."
I have a big brother named Micheal and he is the most awesome brother ever!
I was born with Congenital CMV. It is a sneaky little virus. Because of the cCMV I have Severe/Profound Hearing loss in my right ear, Moderate/Severe Hearing loss in my left ear, possible Cortical Autio Impairment (CAI), Periferal Scar left eye, intermediate estropia, Cortical Visual Impairment (CVI), Cerebral Palsy (CP), Severe Brain Abnormalities, Brain Calcifications, Epilepsy, Severe Reflux, less than or equal to nectar thickness aspiration, and Severe Developement Delays.
I use Hearing Aids, Glasses, wheelchair, Botox injections in my hands and arms, and AFOs. March 2006 I recieved a G-Tube along with a Nissen Funduplication surgery to help with my severe reflux and resolve my "failure to thive" diagnosis. It has worked wonders, I was 14lbs in March '06 and have weighed in at an outstanding 31lbs as of January '09! I just recieve hip surgery on January 5th, 2009 (Bilateral Hip Adductor Tenotomy and Bilateral Varus Derotational Asteotomy).
I started preschool at the Cooperative Preschool for Dual Sensory Impairments and Multiple Disabilites located at the Arizona Foundation for Blind Children (FBC) in November '06 and LOVE IT THERE! We do all sorts of fun things like play with parachutes, roll down wedges, the wiggley table, and learn to walk in a gait trainer... We even go on FIELD TRIPS! My mommy and teachers are extremely pleased with my progress! I will be going through transition soon and leaving this fabulous preschool program and my mom is pretty nervous about that. There is sooo much I want to do, I just need to figure out how to do it in this body that I can not necessarily control. BUT YOU JUST WAIT, YOU ARE GOING TO BE AMAZED AT WHAT I WILL BE ABLE TO DO!
I won't let CMV get me down, I'm a beautiful girl with a pretty smile, I have an AWESOME PERSONALITY and a contagious laugh! Everyone who meets me falls in love with me! I am a strong and happy girl!
- Submitted by her mother, Heather Key
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..."