Krystal’s Story"Just a short story about my little F.R.O.G..."
I was 20 years old when I got pregnant. It was a good pregnancy up until I was 6 months then I had the morning sickness and it was bad. The doctors put me on bed rest for the last months of my pregnancy.
On July 9th 1995, I gave birth at 5:30 am to a beautiful baby girl. She was called FROG from the first time I saw her. She was green when she out (we all know what she was playing with in my belly) hahaha. During the first 3 months I had a completely healthy child (so I thought). I started noting how she was having a hard time sucking and she startled very easy and this started when she was a week old.
We had a few doctors appointments and our Pediatrician (who is the most amazing MD ever) asked if we could do a scan just to make sure things were going good. 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. The night of our test for the CT scan I had received a call from Dr. Bruce Montomerie our pediatrician asking me to meet him in his office first thing in the morning. I was a single mom, her biological dad left at birth. The next morning I was told about her having Congenital CMV. I was in such denial (I have no idea how I made it home).
My step-father was watching Krystal when I came in and just collapsed. He called my mother and for the first week I was so scared to hold her, I thought I hurt her and it was my entire fault. One morning about 6 days later I walked up to my step. Father and my mom and asked if I could have my baby. (I lived with them.) From that day forward, it has been FROG and FROG MOMMY.
Krystal has been through so much and she is amazing! We have had a lot of trying times some so scary I just can’t talk about and others that have changed our life. Krystal has CP, hearing impaired, wears glasses, tube fed, seizures that are being controlled by a great diet and a perfect smile, laugh and heart. Frog is 13 almost 14 and doing very well! She just amazes me everyday. Tomorrow, March 13th, she will be in the Special Olympics for bowling (full help) we are so excited!
I met my husband 6 years ago and he just fell in love with us and we were married 5 years ago and at the wedding he also put a ring on Krystal’s finger and 3 months later he had fully adopted her. She loves him so very much and if you look at the photos you can read so much in her eyes. If I can help in anyway with anyone, please e-mail. I love you all and we all have the most amazing angels ever!
- Submitted by her mother, Sharon Caldwell
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..."