Michael’s Story"I had just gotten married on March 1, 2003, and we found out we were expecting our first child the following month..."
My husband and I started dating back in 1997, when I was just 17 and he was about 22. We found out we were having a boy about 5 months along. As with many parents, I'm sure, you are pretty relieved to have them tell you everything looks fine. Then with the tests they do you assume you are clear of many of the common issues like downs syndrome - all along not knowing of the dangerous other things that can happen.On my first prenatal visit, they asked me so many questions in the paperwork that looking back they didn't even give a second thought to. I worked as a substitute teacher at the time, most around that time with 3 and 4 year olds. But like almost every case, I was unaware of CMV, and the precautions I should have taken. I am sure just like me, every mother that has had their child affected by this has gone over and over in their head what they could have done differently, or how they could have been more careful.
During my whole pregnancy, I had nothing that seemed out of the ordinary. I was induced one week early. I was in labor for 8 hours. Michael Ryan Ruiz was born at 3:47pm on December 17, 2003. Right away he was having some trouble breathing. They kept reassuring me that everthing was fine. The problem was the hospital I had him at had no NICU. They took him to the nursery and put him under an oxygen hood. They never brought him to me, so I went to see him.
Hours passed, they weren't bringing him to my room. We were going crazy asking questions - until about 11 or 12 midnight they realized he was having seizures and the pediatrician came in and said he had stopped breathing and turned grey. They went from reassuring us to telling us he may not make it. The nearest NICU was about 45 minutes away. The halo flight wasn't available so they had to send a transport team by ambulance from that NICU 45 minutes away.
The first time I held my child was when the transport team arrived they brought him in - they told me in case he didn't make it. I had to stay behind and my husband went with my son to the NICU. Two weeks passed and we found out the cause of my son's problems, CMV. Not knowing what this meant for him we where somewhat relieved to hear it was a virus - our mindset back then was just give him medicine for it - fix it. We went through so many ups and downs during those 2 months. He stayed in the NICU for 2 months. He was given gancyclovir during his stay in the hospital and went home on it as well.
He is now 5 years old - will be 6 in December. We were told he would be 100% deaf - he passed his newborn hearing screen and had his last hearing screen when he was 4. He passed that as well. He has Quad. Cerebral Palsy, Epilepsy, and Microcephaly. He is the best thing that has ever happened to me, and I know my husband feels the same. We adore him.
He is non verbal - tries hard though. Has said ma-ma and tries to tell everyone Hi!!!! He cannot feed himself or sit unassisted. He uses a wheelchair which is orange (Texas longhorn fan). He started school at 3 years old and LOVES IT!!!! He is now in kindergarten. He has been in T-Ball for 2 seasons, and he is in 4-H this year and is going to show a goat. The town we live in is really supportive and show him so much love. He is a very happy little boy, and we are so grateful for every day with him.
- Submitted by his mother, Christol Ruiz
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..."