Liam’s Story"We were super excited to find out in 2006 that we were expecting our second child..."
To say that the pregnancy was a roller coaster ride is putting it mildly. When I was 11 weeks pregnant, I was carrying our older son Jamie down the stairs when I fell and broke my ankle. I had to get an x-ray and that worried me so much at that time. I was in a boot for 9 weeks. I finally got that worked out and it was time for our 20 week ultrasound. We were really hoping for a girl. When she said it's a boy I was a little bit disappointed. Boy did that seem selfish of me!
She was taking a really long time and kept looking really hard at something. Finally she said I'm going to take a few pics and get the Doctor in here to talk to you for a minute. The conclusion they came to was that they were not seeing a stomach bubble. I was devastated! They sent me to a high risk OB and we had another ultrasound at 32 weeks. 12 weeks of not even knowing if my baby had a stomach! When we went back we were very happy to realize that our son did indeed have a stomach, but there were a few things off with his brain. They could not find the Corpus Colosum (the matter the separates the right half from the left half). They then decided to do a TORCH test. We were told to come back at 36 weeks and they would do another ultrasound.
They said the results for our TORCH test showed that I had probably picked up a common virus and it was nothing to worry about. They just skimmed right over the results. The repeat ultrasound showed that our son had Hydrocephalus. They said all they could really do was to monitor me until I was closer to delivering, that I would be induced at a local hospital that was right next door the leading children's hospital in the area. He would go the day after being born to get an MRI and probably just have to get a shunt put in and all would be ok.
I was induced on February 5, 2007 and Liam Patrick was born on February 6, 2007 at 10:52 am. It was a very easy delivery. When he came out one of the first things I noticed were these little red freckles all over his body. He was acting fine though so I got to hold him for 10 minutes and he nursed like a champ. They then took him to the nursery for about 2 hours. Everything seemed to be going well. The freckles were an indicator that he had a low platelet count but they were not really worried right then.
Liam stayed with us all night and the next day he was sedated for his MRI. As soon as the Doctor came in after the procedure, I just knew something was not right. He said the good news was that Liam did not have Hydrocephalus and did not need a shunt. The bad news was that the MRI showed significant brain scarring or calcifications on the brain. Two parts of his brain were underdeveloped. They were going to test for a virus called CMV. I had no clue what that was. I do remember having a slight cold around the 34 week period of my pregnancy. Something I probably picked up from my older son or another kid at one of the playgroups we attended.
All the markers Liam had pointed straight to him having it. They laid all the things that could be wrong with him throughout his life and I remember just holding him and sobbing. How could something that I caught make it that he could not hear, see, walk, talk, or so many other things?! We then just took the wait and see approach that I had throughout my whole pregnancy. He will be who is and we will love him for it and if he does these things then he does, if not oh well. He is our child and we will do anything in our power to see he gets anything he needs.
They kept him in the hospital for 5 days. He had Hepatitis and an enlarged spleen. They got his jaundice under control with some meds. Kept him hydrated by feeding formula from a medicine cup after we were done nursing. He failed the newborn hearing test and in my heart I knew he could not hear me. The month after he was released I went straight to Early Intervention and started getting him services. I knew if he was going to be all he could be we needed to start early.
He got tubes in his ears at 4 months and we got the news he was deaf in both ears. He got hearing aids at 6 months and they did nothing for him. He got a Cochlear Implant at 12 months and is making strides in communication. He did not lift his head up until 9 months and did not crawl until 18 months. He now cruises and walks with his gait trainer. He did not feed himself food until 20 months. He nursed for 17 months and did not drink from a cup until 24 months. He was diagnosed with hypertonic Cerebral Palsy at 2.
I know things could have been worse for us. Every challenge that presents itself, we do anything we can do to conquer it for Liam. He is a bright light in our life just the way he is. Liam started school in the fall and he is doing better then we ever expected.
I tell every pregnant woman I know to get tested. I was so blindsided and had never heard about CMV. I sometimes think back to what I could have done differently. I don't know if there is something. I know God gave us Liam for a reason. I look at his smiling face everyday and find nothing but joy.
- Submitted by his mother, Polly Matthews
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..."