George’s Story"Hi, I am Cassidy and I am currently living in Portsmouth, Virginia with my husband. He is proudly serving in the U.S. Navy..."
However, I am from Maysville, Kentucky and that is where my first child was born. His name was George and he is and will always be my CMV baby! He passed away, but I am blessed with a beautiful little girl named Gracie. So basically I am the mother of two and a navy wife. I am also 25 years old and was a young mother. That's about it for me. My George has the story though.
Before I got pregnant with George I literally prayed every night I wanted a child so much....I was still a child myself, but I didn't believe it. Nor did I ever imagine that my child would end up sick. But it happened, I had a son that was to be healthy. On July 30th 2005 I had an emergency c-section to a beautiful little boy. All of the doctors told me that he was fine and healthy. He never got the national hearing test before released and when he got the test 3 months later, well, he failed. The first few signs that I noticed was that he was not responding to sound. My mother actually caught that and when she brought it to my attention I didnt want to believe it. So one day when Georgie was asleep I went to him and got really close to his face and screamed as loud as I could. I was hoping he would wake up and be startled, but that didn't happen. He didn't make any type of movement. He didn't realize that I was there. I cried for hours after that. The other unusual sign was that when he cried, he sounded like a cat. The doctor thought he had Cri du Chat but instead it was congenital CMV.
On October 24th 2005, my sons pediatrition admitted us to Cincinati Childrens Hospital and we stayed there for a week. That was one of the most horrible weeks of my life. During that week the doctors at childrens hospital had nothing but bad news everyday several times a day for a week. I was only 21 and was flippin out (literally). It started with telling me he had subglottic stenosis (narrowing of airway), then that he is profoundly deaf in both ears. That he suffered a stroke while in utero causing 90% of the left cortex not to develop (90% of the left side of the brain) and the right side wasnt fully developed either. My son was also legally blind and could see no more than 6 inches in front of his face. But my son was special and despite the brain malformation he was not paralyzed. All of the doctors told me that I should have had a miscarriage with him. But I was lucky and got to have him in my life. He also suffered from seizures and later needed a feeding tube, an oxygen machine, and much more. He was really sick.
He had seizures all the time, 50 or more a day, and they were in clusters. At one point in time, he was on 4 seizure medicines and 2 emergency meds. One of the last seizure medicines that he was placed on caused my son to gradually decline. He wouldn't eat and he would cry when you touched him and I mean just brushing his hair away from his face would cause him to look as if he were in pain because of it. He eventually quit eating and was placed on a feeding tube. Before he was put on all the medicine, George loved to play. Yes, he had his hold backs but he loved to be flipped in the air and I would hold him by his shoulders and he was upsidedown and then he would flip his legs when he was ready then he would laugh and laugh and if I stopped he would cry. He had hearing aids by 4 months and he was adorable. Also during his short life, he suffered from glaucoma and he had several surgeries on his eyes and eventually had shunts placed in both eyes.
The day he passed away was Tuesday April 17th 2007. That whole day he was in someones arms- my mothers, my sisters, mine, and my husbands and so forth. Everytime that he was in my arms he would take a deep breath and would not exhale for about 15 to 30 seconds. Each breath I thought was his last and while in my arms craddling my son that I wanted so incredibly much and loved more than anything, I had to tell him that it was okay. I had to lie to my child while he was on his death bed. I had to keep reasuring him that this mother was going to be okay with him gone. It was a lie that I had to tell. He needed to let go and give up the fight--he had been fighting for his life since before he even got to breathe an ounce of air. I have been telling everyone I meet about Georgie and his battle against CMV. I honestly believe that everyone should be aware of it, so I try hard to spread the word. George wouldn't want anyone else to suffer and he would want me to help make people aware.
As I am typing this to you, my eyes have filled with tears and they are streaming down my face. I watched my son suffer as I am sure so many of you have watched your child suffer in some way. My little angel was so incredibly sick and he was not going to get better. He also gave himself aspriated pneunomias. His lungs were failing and he was drowning himself with his own saliva, which lung failure and delayed swallows are all caused from CMV. My little boy needed to go home and be with God and there is no other person better capable of taking care of him, if I can't be there.
- Submitted by his mother, Cassidy Bamforth
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..."