"I wanted to share my story so others don't feel so alone the way I have..."
Before we walked into the doctor's office at 19 weeks pregnant, my husband and I had decided that as soon as we found out the sex of the baby we'd go to the store and register for our baby shower. Less than an hour later our dreams were shattered.
The nurse doing the ultrasound was chatting with us and doing a million measurements and attempting to find the sex of the baby. We noticed she stopped talking and took 10 more minutes of measurements of his head. She told me to go to the bathroom and move around a bit so we could see the sex.
When I got back she was gone and my husband was sitting there alone. Another nurse walked in and said she was on the phone and would be back soon. I got very nervous, and when she walked back in I knew something was terribly wrong. A doctor was behind her and said, "I know I'm not your usual doctor but..."
She said the baby had severe hydrocephalus (three times more fluid in his brain than he should have), and that they couldn't find his stomach. By the time they told me he was a little boy, I didn't even care. I just wanted my baby to be OK. They looked for indications of all the common syndromes but couldn't narrow it down to anything specific. They had already called my doctor and scheduled me an appointment with the best specialist office in the state.
I went home in tears and researched frantically for the best case scenario. I found nothing but sad stories of profound disabilities if they lived at all.
I met with the specialist and he ran every test he could think of after nearly two hours of ultrasounds. Then I had an amniocentesis and we were stuck waiting for the results.
I am a teacher and went back to work on Monday still waiting for answers. Suddenly I had severe back pain and ran out of the room to throw up, leaving my poor first graders with the door open to the neighbor teacher. I went straight to the doctor who said I had a kidney infection and sent me home with some pills.
The next morning I felt like I was going to die and couldn't even keep down water. I was admitted to the hospital and my health was failing. I didn't respond to treatments and I kept getting worse. I developed pneumonia, and wasn't getting any better. They even sent in the CDC to try to fix me. After six days, they finally got it under control. The specialist had to come to my hospital bed to tell me what was wrong with my baby.
I was told my baby appeared to have CMV. I was given the choice to end my pregnancy but I wasn't sure. Being a teacher, I work with special needs kids all the time, and I was OK with that being my son. But then they sent in the perinatologist to explain just how severe it was. He would never be able to see, or hear, or eat on his own, and would be mentally retarded and that's if he lived at all. To top it off they weren't sure if my body would survive. My husband and I decided that a life of pain wasn't what we wanted for our son.
After three and a half days of labor Elias David was born on October 30, 2008, at 10:44 a.m. He was 1 pound, 4.6 ounces and 11 inches long. He was so early that I didn't even have to push once I finally dilated. He came out before the nurse even had her gloves on. It was so strange because the room was silent. No one said anything to me at all. They just wrapped him in a blanket and handed him to me.
This has been by far the worst thing in my life and it's hard looking at people afterward. No one knows what to say, and some say the right thing, while others you just want to strangle for what comes out of their mouth. And then there's the words that are never said at all. Like when a friend had her baby and no one told me, because they didn't want to upset me.
I miss my son and wish I had him back, even though I know that no one can survive without a brain or a stomach. It still hurts to know he's gone.
- Submitted by his mother, Lisa
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..."