Austin’s Story"Hello, my name is Lisa Span, married 20 years to Martin Span. We have three wonderful children..."
Trae, 18 years old, first year in college at the Air Force Academy, Madison, 12, in the sixth grade, and Austin, 16 in Exceptional center, Grandma, three houses down (who we could not live without), two dogs and 4 birds. I am a homemaker by our choice. My husband works full time and we also are actively involved with the youth ministry at our church.
First of all, I want to give hope to those who have special little ones. My son was born October 21, 1992. I had a normal pregnancy, no issues. I worked up until my 38th week. I started having pain after my 39 week doctors appointment. My water broke but I did not go into labor. When we got there, they told us there was meconium in the fluid which translated that he had a bowel movement in the womb and could be in distress. His heart rate was not strong. They put in an internal monitor and checked his oxygen saturation level. Then they put me on oxygen and started putting fluid back in so that it would not be a dry birth. I knew things were not right when all three doctors in the practice showed up. When his heart rate started getting weaker, they told me I was close enough to push. When he came out and they put him on my chest, we was very yellow and had purple spots all over him. All the blood vessels in his body were damaged...he looked like a purple, yellow bruise. He weighted 8lbs 4ozs. They whisked him away. We were in a small Women’s hospital. That night I sat in the nursery in protective garments, they thought it was hepatitis. I will never forget, my husband had gone home to be with our 2 year old son because it was very late in the evening. My OB/GYN came in with the Neonatologist. They both looked like they had just rolled out of bed, they told me his body was shutting down and we had to transfer him to All Childrens Hospital.
I called my husband and we followed the ambulance. That was the the hardest night of our lives, they told us there was nothing we could do, but we went and got on our knees and prayed. We prayed that that God would heal our son. We never questioned why, but God did have a plan. When we got to see him the next morning, they were running tests. We called everyone we knew to pray for him.
They told us his liver, spleen and kidneys were enlarged, he had a very low platelet count, like 14,000, normal was like 140,000 so they had to give him platelets. The head of the Neonatology unit set up an appointment to meet with us. She told us that we had to prepare for the worst, that he might not live. He had calcifications on the brain, his internal organs were not working properly, he could be blind, deaf, a lot of doom and gloom. She told us he had CMV. How I never had it, I will never understand, my mother ran a daycare in our home for most of childhood. They wanted to give him a experimental drug called Gamma Globulin. The risks of that were to great for our baby.
They finally let us hold him, that was the hardest two weeks of our lives, but everyday, he got stronger and better. He finally got to nurse and started thriving. He stayed in the hospital for about two weeks. When they sent him home they told us no outings, no visitors, we had to wash our hands before we could touch him. We had to find a pediatrician who had ever had a patient with CMV. I think we were one of a handful of children born with CMV in 1992 at All Children’s hospital.
After six months, the internal medicine doctor discharged him. His internal organs were healed. After a couple of seizure scares and a few EEGs, the Neurologist discharged us. He told us his life would be like a hallway of doors, some he would be able to open some he would not.
We started therapy, speech, occupational, and physical. We had to become his advocate quickly because insurance did not cover the therapy he needed. He had colic, he threw up a lot, but he started growing. He finally sat up around a year old, crawled about 18 months old, walked at 4, started with a walker, but eventually learned to run. He taught himself how to swim at 6. He finally got out of diapers at 6 years old. He communicates with some sign language, he has some words, but mostly communicates with the PCS System. It is a picture card Exchange system.
He is a big 16 year old boy. He has a great behavior therapist that helps him with new situations, and things he does not like. He has been riding a three wheel bike for years, but just started on a two wheeler after 2 years of practice. He has been diagnosed with PPD, Persuasive Development Disorder. He is in a local center public school. He is in a Autistic class. He has some aggression issues, but for the most part he is a loving, happy young man who loves trains and DVD's more that most.
He has been a blessing to our family. His older brother went away last year to his first year in college at the Air Force Academy. He also has a 12 year old sister and they love to aggravate each other. We are blessed, he has overcome many obstacles and hurdles in his young life, but we have never given up hope.
- Submitted by his mother, Lisa Span
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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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..."