Kyra’s Story"MY DAUGHTER KYRA WAS BORN ON MARCH 27TH 2002 AT 12:16PM. SHE WAS 21 AND 1/2 INCHES LONG AND WEIGHED 6lb 1oz..."
I THOUGHT SHE APPEARED HEALTHY- SHE WAS SOON FACED WITH MANY TRIALS AND TRIBULATIONS THAT NO CHILD AT ANY AGE SHOULD EVER HAVE TO GO THROUGH.
IT ALL BEGAN WITH THE DOCTORS FINDING ENLARGED FLUID PACKETS INSIDE HER BRAIN "CAPILARIES". IT SOON ESCALATED INTO THE DOCTORS THINKING SHE WAS BLIND DUE TO THE NUMBER OF BLOOD SPOTS FOUND BEHIND HER EYES. AFTER NUMEROUS TRIPS TO THE LOCAL PHYSICIAN AND MANY TRIPS TO THE SPECIALIST LOCATED IN LOUISVILLE, KENTUCKY, WE DISCOVERED THAT SHE WASN'T BLIND BUT DID HAVE EYESIGHT ISSUES.
THE TROUBLES DIDN'T STOP THERE. DURING THE MIDST OF ALL THE RUNNING ABOUT TO THE SPECIALIST AND ATTENDING TO HER EVERY NEED, THE PHYSICAN'S WIFE WHO WAS ALSO A PEDIATRICIAN NOTICED THE SIMILARITIES BETWEEN MY DAUGHTER, KYRA, AND A CASE THAT SHE STUDIED WHILE IN NEW YORK CITY.
SHE TESTED KYRA FOR THE CMV VIRUS AND IT CAME BACK POSITIVE. KYRA WAS JUST A FEW DAYS OLD AT THE TIME OF DIAGNOSIS.
AS SHE ENTERED THE SCHOOL SYSTEM, SHE WAS DELAYED AS EXPECTED DUE TO THE INFORMATION WE RECEIVED FROM THE DOCTORS. THE SCHOOL SYSTEM HAD WORKED WITH HER FOR ABOUT 2 YEARS WHEN WE CAME ACROSS ANOTHER ISSUE. KYRA IS ALMOST COMPLETELY DEAF IN HER RIGHT EAR AND HAS SIGNIFICANT HEARING LOSS IN HER LEFT EAR. AFTER MAKIING A COUPLE OF TRIPS TO THE SPECIALIST IN ASHLAND, SHE OBTAINED OUTER EAR HEARING AIDS WHICH HAVE IMPROVED HER SCHOOLING IN THE GREATEST OF WAYS.
WHILE KYRA HAS BEEN BABIED HER WHOLE LIFE SHE HAS COME TO THINK SHE CAN GET AWAY WITH ANYTHING, MAINLY MY HUSBAND'S AND MY FAULT.
FURTHER EVALUATION WOULD SHOW THAT SHE ALSO HAS ADHD. SHE IS NOW ALMOST 7 AND TAKING 15MG OF FOCALIN DAILY TO HELP HER WITH HER DAILY LIFE. SHE IS FULL OF LIFE AND KNOWS NO FEAR. MY CHILD IS DELAYED IN HER SPEECH AND IS CATCHING UP QUICKLY IN HER STUDIES AT SCHOOL.
IT IS HARD FOR PEOPLE TO UNDERSTAND WHAT CMV ACTUALLY IS. IT ISN'T SOMETHING THAT YOU HEAR ABOUT. I KNOW WHEN I FIRST HEARD HER DIAGNOSIS I WAS FULL OF QUESTIONS AND MOST OF THEM I HAD TO FIND THE ANSWERS TO MYSELF. I RECALL BACK TO WHEN MY CHILD WAS STILL IN THE HOSPITAL AFTER HER BIRTH AND DIAGNOSIS, MY HUSBAND'S COUSIN CAME TO SEE US AT THE HOSPITAL. AFTER HE LEFT, HE WENT TO HIS SISTER'S HOUSE WHO HAS 2 KIDS OF HER OWN. SHE REFUSED TO LET HER BROTHER IN BECUASE HE HAD BEEN AT THE HOSPITAL WITH US. SHE EVEN WENT ON TO SAY, AND I QUOTE, "I DON'T WANT MY KIDS TO CATCH WHAT SHE HAS". AND IT ISN'T AS CONTAGIOUS AS WHAT SOME DOCTORS MAKE IT OUT TO BE.
IN CLOSING, KYRA IS A BALL OF ENERGY AND AT TIMES PUSHES HERSELF TO LIMITS UNKNOWN. SHE IS LIKE ANY OTHER 7 YEAR OLD, A LITTLE BEHIND IN SCHOOL AND HEARING BUT THERE IS HOPE WITH KYRA'S STORY THAT THERE IS A FIGHTING CHANCE WITH CMV.
I DIDN'T KNOW AT ALL WHAT TO WRITE BUT I HOPE THIS HELPS GIVE A LITTLE HOPE AND INFO TO WOMEN THAT HAVE CMV KIDS. AND I AM VERY THANKFUL FOR THIS SITE SO IT CAN GET OUT THAT CMV CAN HAPPEN WITH ANY PREGNANCY AND ITS NOT THE MOM'S FAULT.
GOD BLESS YOU ALL, THE BOLDEN FAMILY
- Submitted by her mother, Annie Bolden
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..."