CMV Parent Stories - Share your Story - Real Story of Congenital CMV

Elias David’s Story

"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

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