Bryson’s Story"My husband and I had been married for about 2 years, together for 5 and from day 1 we knew we wanted children..."
We started trying about April of 2008 and it didn't take too long. On July 7th I found out I was about 3 weeks pregnant. All along we wanted a boy and in October we found out that we were, in fact, being blessed with a baby boy! He was due March 26th 2009. My whole pregnancy was great. No morning sickness or complications.
On February 20th, we went for a sonogram and found out that the baby had cysts on 1 of his kidneys. I thought this was the end of the world. Little did I know there were more complications to come. On February 24th at 34 weeks and 5 days pregnant, I started cramping and noticed he wasn't moving much. That night I saw a show where the mother had gone in at 39 weeks and her baby was stillborn. So all that night I was just waiting for a little movement. The next day I was still cramping about every few minutes. I thought it was just Braxton Hicks because it was too early. I went in to have everything checked because he still wasn't moving.
We were at the hospital on the monitors for maybe 30 minutes when the nurse came in and said they were gonna do an emergency c-section because his heart rate was deceling. I panicked. Is he gonna be ok? It's too soon. Will he make it? About literally 5 minutes later they are wheeling me out telling Josh to throw his scrubs on and get ready. They wheeled me in and put me out. A couple hours later I woke up to find that I had a baby boy. Feb 25th 2009, 4lbs 6oz 18 inches long. He was breathing on his own and doing good. Wow, what a miracle, I thought to myself.
I didn't get to see him for about 5 hours. They were having a hard time getting in an IV because his veins were so small. He kept bleeding when they stuck him and wouldn't stop. They checked his platelets and decided to send him to Cooks Childrens because they were really low. I finally got to hold my baby boy before they took him. They told me they thought he may have a virus called CMV because of his blueberry looking rash and platelet levels. I didn't know what that was until the next day when the neonatologist called to explain it to me.
She starts talking about blindness and deafness and mental retardation. I just broke down. How could this be happening? What did I do wrong? As she called me with updates, things seemed to get worse because of course the doctors prepare you for the worst. On the 3rd day, they called me back to tell me they did the scan of his brain and it looked good. No calcifications. Thank GOD! She calls later and they had done the eye test. All good. Then they call with the hearing results. Inconclusive. They do it again and find he has moderate loss in both ears. He also has just 1 kidney that works. Nothing to do with the CMV and also Hypospadius. Also nothing to do with the CMV.
Hypospadius is where his wee wee didn't grow right and the hole is on bottom and not on the end. He has surgery to fix it in September and his bad kidney should desolve and if not, he will have it taken out at about 5 or 6 years old. He also had pin size holes in his heart that should grow up. We go to the cardiologist in May for that. We went to the audiologist and his hearing was a little better but still moderate. They said there was probably fluid in there. We go back for another test and to talk about hearing aids next week.
He is doing so well. He's such a fighter. You wouldn't even know anything was wrong with him by looking at him. He's so strong. He has gained at least 2 lbs and is eating well. Has a little reflux issues but not too bad. We are so blessed to have him in our lives. I pray his hearing doesn't get worse. They said it is very possible that it would but we are hopeful. God has been with us throughout all we have been through. My doctor told me if we would have waited just 1 more day and not came in, our son would have been stillborn. I hope his story gives hope to others affected by CMV.
- Submitted by his mother, Jesica
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..."