Jaxon’s Story"I found out I was pregnant on March 30, 1998. I never thought anything was wrong. I was having a great pregnancy except the morning sickness..."
About the fifth month, I was seeing black spots but didn't think anything was wrong still (until I had my eyes checked 7 years ago, the doctor said my retinas were damaged and he asked me if I had had CMV. I said yes, my son was born with it.)
Anyways, back to the story. I worked and just went to my appointments. The doctor said everything was ok. Until my second to last apointment, my blood pressure was up so high they said I should have been in a coma. They took me right up to a room and started the drip to start my contractions.
He was born the next day, November 25, 1998. He was 5lbs and 2oz. He had a small head, large liver and spleen with red dots on his face.
They started asking me questions about what I had been doing during my pregnancy. They wanted to make sure I wasn't doing drugs or some crap like that. The doctors had no clue about what was going on.
Two days later my OBs came in and the doctor said he tested me in my 1st trimester for CMV and it was negative. I was like "what is that" and he said just a virus like a cold, nothing major. Then he said I was positive and they were going to do tests on Jaxon because that could be the only reason he was having problems.
I was very mad. He knew I was working in a daycare with babies and 1 year olds. I asked him before working there if it would be ok and he said yes, but it wasn't.
Well, the test came back and he had it. They just told me there wasn't anything they could do about it.
They kept him there for 2 weeks then we went to Childrens to talk about the CMV. They wanted to do the Gancyclovir study but I didn't want to do that. They said there was a 50/50 chance he would make it in the study and 50/50 that he would make it through the meds. Then they said it was a 50/50 for it to work. I asked what it was for, they said just to keep his hearing so we didn't do it. I couldn't see putting my little baby in a study that might kill him.
Months went by. We went to doctors and therapy apointments and everything seemed ok, he didnt seem to have anything wrong with him, until he was 9 months old and he started having Infantile Spasms (seizures). So we had to start seeing a Neurologist.
They put him on all kinds of meds--Apheno, Atch Twice, Keto Diet, Depokote, Lamactile, Topomax, Kolonopins. I don't know if I even remembered them all since it's been so long ago that he took meds.
He still can't sit up, crawl, talk or walk. He is walking in a walker but not on his own.
He still had some seizures after we took him off all the meds. We found out the combo of the meds was making him have more. Now they just have him on Kolonopins to help him sleep and Diastat when he has a seizure.
He is learning very well in school. He is doing so much better since we took him off the meds. He may have 2 or 3 seizures a year compared 5 to 10 plus a day. He had tubes put in his ears twice and wears glasses but he can see and hear. He also had reflux and we did the surgery to fix that and he has a G-button--we don't use it much anymore. He can feed himself a bit, he loves doing that. He also loves Double Cheeseburgers from McDonalds.
Make-A-Wish sent us to Disney World in 2003, also that year he did say "Mom" one week before my birthday and never said it again, but that's all I wanted was for him to know who I was.
He was to have AFOs for his feet and a lift for his right shoe, he uses a stander and he is in a wheelchair. He also did HBOT for his CP. He is in a special school and they are great with him, I couldn't ask for a better school. He is a Daddy's boy as well. He loves his Mommy, Step-Dad and little brother, too.
- Submitted by his mother, Becky Twyman
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
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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..."