Miranda’s Story"I GOT PREGNANT WITHIN LIKE 2 MONTHS AFTER HAVING MY SON DEVIN. MIRANDA WAS A BIG SUPRISE BUT WE KNEW WE WOULD LOVE HER SO WE DEALT WITH IT THE BEST WE COULD..."
AT 20 WEEKS WHEN YOU HAVE YOUR USUAL ULTRASOUND THEY FOUND THERE WAS SOMETHING GOING ON IN HER BOWEL AND HER GROWTH WAS A WEEK LESS THAN IT SHOULD HAVE BEEN. AT THAT TIME THEY SAID IT WAS PROB. NOTHING TO WORRY ABOUT.
THEN I STARTED TO GO TO A HIGH RISK PLACE TO SEE WHAT WAS GOING ON AND THEY STARTED RUNNING TESTS. THEY SAID IT LOOKED LIKE IT WAS CMV.
I HAD NEVER HEARD OF IT BEFORE SO I THOUGHT OUT OF ALL THE OTHER THINGS THEY TOLD ME COULD BE WRONG I WAS A LITTLE RELIEVED AT THE TIME. BY THAT TIME THEY WHERE GOING TO TELL ME MORE I HAD TO GO TO THE HOSPITAL TO HAVE A EMERGANCY C- SECTION, SHE WAS ABOUT TO DIE...
THAT IS WHEN THE NIGHTMARE BEGAN...
SHE WAS IN THE HOSPITAL FOR 6 WEEKS AND THEN THEY THOUGHT SHE COULD COME HOME BUT HER CMV LEVELS JUMPED TO WHERE THEY COULD NOT EVEN TELL HOW HIGH THEY WHERE AND SHE STARTED BLEEDING OUT...
SO THEY HAD TO KEEP HER IN THE HOSPITAL ALL HER LIFE, SHE JUST GOT OUT AND SHE IS ALMOST 10 MONTHS OLD. SHE HAS A VERY RARE CASE OF CMV, IT HAS BEEN RESISTANT TO ALMOST ALL THEIR DRUGS BUT IT IS STAYING A LOT LOWER NOW, BUT THERE HAS BEEN A LOT OF DAMAGE DONE...
SHE HAS DAMAGE TO THE BRAIN, HER LIVER AND SPLEEN ARE HUGE, SHE HAS A WHOLE IN HER HEART, SHE IS DEAF, SHE IS UNABLE TO ROLL OVER, HOLD HER HEAD, ECT. SHE HAS A G-TUBE AND A CENTRAL LINE FOR HER MEDS AT HOME. THEY ARE THINKING SHE IS HAVING SEIZURES, AND THE LIST GOES ON...
SHE IS STILL NOT OUT OF THE WOODS WITH THE CMV, WE ARE JUST TAKING IT ONE DAY AT A TIME!! SHE WILL ALSO BE GOING BACK IN FOR SURGERY THIS COMING WEDNESDAY AND WILL HAVE TO BE IN THERE FOR A WHILE AFTER.
WE LOVE OUR ANGEL BUT IT MAKES ME SICK TO SEE SOMETHING THAT NO ONE KNOWS ABOUT DO SO MUCH TO A BABY. YOU DON'T JUST HAVE TO DEAL WITH ONE PROB BUT THE WHOLE BODY!!! IT IS SAD AND IT BREAKS MY HEART TO SEE OTHERS GOING THORUGH SO MUCH WITH THIS. BUT IN THE END I KNOW THE LORD IS STILL FAITHFUL. THE HARDEST PART IS SEEING HER SUFFER!!!
- Submitted by her mother, Angela Brown
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..."