Brayden’s Story"Ok, lets see... where to start. I guess I will start from what I know as the beginning..."
I wasn't feeling well one day so I decided to take a pregnancy test. I was on the Deprovera shot so I didn't think there was any chance of being pregnant, but you never know. I had not taken the last shot because me and my fiancee decided that we wanted to try and have a baby. So to my surprise, the test came out positive. I was really excited and figured that I was only around a month pregnant. The reason I thought I was only a month was because me and my fiancee had been split up in the past for almost 2 years, and I had another boyfriend about 7 months before this time, but when we got back together he was in Iraq and had only been home a month prior.
I made my initial OB appointment for the following week to start the process. Well, I go to the doctor and found out that I was actually 28 weeks pregnant. In the months before this I had been loosing a bunch of weight (about 50 lbs), had no sickness, or any effects of being pregnant. Neither me or any of the nurses believed that I was that far along. Oh well, time to start preparing.
About 2 weeks after this, we did my first ultrasound. The tech saw something on the ultrasound but couldn't tell me what it was. Since my doctor out sourced his ultrasounds I had to go to the specialists office the next week. Well, we came to find out that initially they thought our son was going to have Dandy Walker Syndrome. For the next few weeks I went in for an amnio, that came back clear, and weekly ultrasounds.
There was nothing we could really do being this far along, other than wait or him to be born and work from there.
So a few days before my Week 32 scheduled appointment, my stomach started getting really tight. I called my doctor and they said it was probably just Braxton Hicks. When I went in for my appointment, they decided to check and see if I was dilated. We found out then that I was 3cm dilated so he sent me over to the hospital for further tests.
When we got to the hospital, they realized that my contractions were already 5 min apart. They decided then that they would give me the shot to stop my labor. So, they gave me the shot and sent me on my way. I stopped by the dr office and they said that the shot should last from 24hrs to a week. I drove home, about 30 min, and ate a sandwich. When I was done my contractions started again. I called the Doctor back and this time he told me to pack a bag, I was staying.
I was already scheduled to have a C-section, we just moved it up a few weeks. My son was born on July 12, 2006 at 9:10 p.m, he was 5 lbs 4 oz, and 17 in long.
Over the next few days, he was having a hard time eating so we were transferred to the NIC unit at the closest Childrens Hospital. We spent a week there and it was not until the last day there that they told me that he had CMV and not Dandy Walker. I was a young mother and they tried to talk to me like I was so it wasn't a good situation. They told me that there was an experimental drug out that we could try but I turned it down. He was released the next day without another word from the doctors.
About a month and a half later we finally got an appointment with a Neurologist that explained Braydens' case to me. At that time the only complication we had was a Calcified Cerebrellum. They stated that it was about 75% calcified and we just had to work with him. Some doctors told me he would be severely disabled, go blind and deaf all within the first year.
I am the type of person who does not take no for an answer so for the last year and a half we have worked with him non-stop. He has therapy 2 times a week (more to be coming) and he is the happiest kid in the world. He never cries, and sometimes we worry about his pain tolerance, and he has very bad low tone. He likes to lead with his head so it makes it very hard for him to handle balance. He does not crawl, walk or talk yet, but we get closer each day.
In the area that I live in, there are not many doctors that deal with CMV or even know what it is so it has been trial and error. We know that he now has CP along with the CMV so that is our struggle at the moment.
- Submitted by his mother, Rachel
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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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...
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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..."