CMV is the leading preventable viral cause of developmental disabilities. Help us raise awareness and improve lives!
1 in 150 children is born with congenital CMV in the United States.
According to the Centers for Disease Control and Prevention (CDC), CMV is the most common congenital (meaning from birth) viral infection in the United States.
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This is the story about a little boy named Luke. Luke was born on March 31, 2010. He was eight pounds eight ounces. He passed his hearing test in the hospital and was released on the third day.
My husband and I started noticing that Luke was not meeting his developmental milestones. I asked the Pediatrician multiple times for suggestions and answers. At eighteen months, I told the doctor that I wanted a referral to the Neurologist.
A few weeks later, we met with Kids Neurology. They were amazing. They gave us answers and helped equip us to help Luke. A week later, we received Luke's first MRI. The MRI confirmed that Luke had Cerebral Palsy and CMV could be a possibility. They discovered, after multiple doctor's appointments, that CMV was the cause of Cerebral Palsy and a hearing loss in his right ear.
On February 24, Luke became deathly sick. We ended staying in the hospital for six days. He had pneumonia and Sepsis. With prayers, we returned home. A week from being dismissed from the hospital, we noticed Luke's like's became dislikes: not listening, making animal sounds, reading his favorite books, and his behavior changed.
Luke was diagnosed with profound hearing loss in both ears in May 2014. CMV has taken Luke's hearing, but we know that in the spiritual realm Luke can hear and is delivered from CMV. We are waiting for it to manifest itself in the natural realm.
Our blessings: Luke is initiating conversations in sign language, starting to run (with some falls), and is able to walk backwards. We are out of pull-ups. He is the light of my life and everyone who comes into contact with him. He always has a smile and signs I Love You.
It is written that the prayer of faith will save the sick, and the Lord will raise him (Luke, your child) up. Thank you, Father, for sending Your Word to heal (Luke, your child) and delivering (him, her) from all destruction's (CMV, Cerebral Palsy, hearing loss, blindness). Amen.
I hope this is a story of hope to those who have been struck by CMV....
It was around 14 weeks of my third pregnancy that I began experiencing severe itchiness all over my body. It was the end of winter in Madison, WI and at first I didn't think much of it. When it started to spread to my palms and the soles of my feet, I decided to mention it to my doctor at my 16 week check up. This seemingly crazy side effect of pregnancy began a new journey for our family. The doctor discovered through a blood test that my bile levels were very high. They referred me to some specialists at my hospital for further testing. This team of prenatal doctors determined I had a very rare case of Cholestasis. Cholestasis of pregnancy or ICP is a liver issue that commonly effects pregnancies in the 3rd trimester. They felt it was very strange for me to have it so early, but went ahead and put me on some medication to treat it. They also scheduled monthly ultrasounds as a precaution. The medication worked and we were just happy the itching was gone!
My 20 week ultrasound was normal and we were happy to find out we would be adding a second girl to our family! It wasn't until my 24 week ultrasound that another symptom popped up. The technician noticed some fluid around my daughter's stomach, so we were once again sent back to the prenatal specialists. They confirmed the technician's findings and decided they wanted to do an amniocentesis to find out what was going on. At 24 weeks, this wasn't the best time for an amniocentesis, but they assured us it was instrumental in determining how we should proceed with this pregnancy.
After an agonizingly long weekend waiting for news, we found out that my amniotic fluid had tested positive for CMV. They believed that my itchiness at 14 weeks was actually my body's response to the CMV that I had contracted and not Cholestasis. This was such hard news to hear, but the great team of doctors we worked with assured us that there was still much hope in our daughter's condition. This was the first time I had ever heard of CMV and this was my third pregnancy!
Right away the doctors set us up with a slew of appointments. They immediately rushed a preauthorization to our insurance to approve an IVIG treatment for that Friday. It finally came through Thursday evening that the insurance company would cover it and 3 more IVIG treatments throughout the remainder of my pregnancy. This was not an easy task! My doctor and nurse had to fax over 40 plus pages worth of articles before my insurance company finally agreed to the procedure. We were so thankful for their diligence in seeing that through! Each treatment would have cost us $20,000!!
My IVIG treatments were 8-10 hours long and required me to be hooked up to an IV at the hospital. While the treatments were long and tiring, I was just thankful to be able to have the treatment available to us! I also had weekly ultrasounds and in my third trimester went in for weekly stress tests as well.
Our baby girl continued to do well and within weeks, we even saw the fluid around her stomach go away! We were ecstatic about that! My fluid levels were high and they continued to monitor that closely. The doctors were very cautious with us and let us know that they wouldn't really be able to tell us much until she was born. They prepared us to expect a one to two week stay in the NICU when she was born and a possible 6 week treatment of Ganciclovir.
I was scheduled to be induced on August 26th, 2013. It was a fairly smooth induction at 9am and at 2pm Everly Grace was born. The NICU team and Infectious Disease team of doctors were there to do an initial check. Within minutes, they handed her back to me and said they would wait to do more tests, as she looked great! We were over the moon and were able to enjoy 5 more hours with her before they began the list of tests. Everly ended up in the NICU for less than 24 hours and passed all her tests! We were so shocked! We had prepared for a long NICU stay and medications, but instead were sent home after a few days with our sweet baby girl and no need for any drugs!
We continue to do more intensive hearing and vision tests, but so far she has passed them all. They have told us that until she is about 4 years old, they won't know the full extent of how CMV has effected her development. On Tuesday we will celebrate her first birthday and we couldn't feel more grateful for our happy little girl! She is crawling so fast and pulling up on furniture. We know it won't be long before we're chasing after her.
We know that many of those effected by CMV aren't as fortunate as Everly, and we hope and pray that there is more done to prevent this horrible virus from effecting so many lives.
This is the story of Carter, born February 8, 2014. That is where the story begins because my wife had a seemingly normal pregnancy and gave birth full term with no one mentioning a thing to us.
He was born 5lbs 15oz with a head size of 31.75cm. Looking back now, he obviously had a small head, but with no other signs I guess the doctors didn't suspect anything. He didn't pass his first hearing screening, but neither did my daughter and she can hear fine, so we didn't think twice about it. We left the hospital within 24hrs, so we had to make an appointment 2 weeks later in the audiology department for his second screening, which he failed again.
We weren't able to get an ABR appointment until some time in April where he showed moderate hearing loss in both ears. We made appointments with two top ENT's in Los Angeles, one at USC and one at UCLA, which wasn't until May. By this time we already had concerns about his head control/developmental delays, and he didn't seem to want to look you in the eye. We mentioned these symptoms to the doctors and nobody mentioned a thing about congenital viruses or a simply blood/urine test that could be performed.
One of the ENT's told us to take him to an ophthalmologist to check for retinitus (still not mentioning anything about CMV) and the ophthalmologist said his retinas were fine. Carter was fitted with hearing aids in June, which he seemed to react to initially, but as time went on we questioned whether he was hearing anything with them or not.
At his second ABR test in July they couldn't even get a reading at all and said he now had profound hearing loss. I wasn't even aware there was a good possibility his hearing could get worse and was floored by the news. I frantically started searching Google for progressive hearing loss and came up with CMV on my own based on his symptoms. I asked our ENT if we should test him for it and she ordered the test, which needless to say came back positive.
Why the "F" didn't two different ENT's and two different pediatricians come up with this on their own?? It's a simple blood test that could have prevented his hearing from getting worse. As I write this I am livid and feel partially responsible as my sons keeper for not taking better care of him.
At that point we were referred to an infectious disease doctor at UCLA who said he wasn't convinced Carter had congenital CMV by the low amount of CMV in his blood. What? Now he didn't have CMV? The doctor said Carter didn't have the typical signs of congenital CMV (hearing loss, something is going on with his eyes, but we aren't sure what, can't hold his head up, etc.) and that motor skill delay is not a symptom of CMV. Tell that to everyone on here talking about their kids not being able to hold their head up. Anyway, he ordered another blood test and a urine test, which showed over 350k copies/mL and were called back in to start anti viral treatment. So now he does have CMV again?
Carter is now 6 months old and just started the anti viral medication because his symptoms, which seem clearly to be CMV, went overlooked by so many doctors. We have a MRI scheduled for Sept. 25th and can only hope it doesn't show too much damage. He's making progress with holding is head up, but it's not where it needs to be yet. We have another ophthalmologist appointment tomorrow and have decided to do the Whole Exome Sequencing genetic testing at doctor's recommendations because they still think something else could be at play here.
It's been a roller coaster so far and I don't see it stopping anytime soon.
I figured I could share my story.. At least an up to date, as detailed as my frazzled mind can fathom going through to remember again..
Hi Y'all....its been awhile I am the pround momma of Mallerie and Laney Cate (my CMV Child).... My story is already here but this is my update.....Laney Cate is now 6 and thriving....she has no long term complications from the symptomatic CMV that she was born with.....I have just now felt ok posting this because its hard not to feel guilt when I see children that this virus has affected. I am scared to death at every hearing test and eye exam. I am over protective because she is so small....37 lbs at 6 but I am getting better. I wanted to post this because I want people to understand that even though my child is unaffected I cannot say I will ever be the same. I am more understanding of life being such a precious blessing. I have mourned the loss of a marriage. I have struggled to get back on my feet but I survived. I am more helpful to parents of special needs children and I am teaching my kids that just because a child is different and has challenges they are still perfect! Laney Cate starts first grade in 2 months and she is my strength.....Just is just an update.....blessings to all
One of the reasons that I wanted to blog was because I found a lot of comfort in reading the blogs of other people who were dealing with children with either physical or developmental delay. We found out James had CMV when he was 8 weeks old and it seemed at the time that there were a lot of unknowns (and a lot of statistics.) When I was looking at my little guy, I found a lot of comfort from reading other mommy blogs and seeing how happy their children were and how life continued on. Those were really dark times for me and I found a light at the end of the tunnel because of the blogger community.
When I think back to the moment I first heard about Cytomegalovirus, I still get chills down my spine. It was January 31, 2014 and my beautiful baby girl had only been born for one hour. I was still recovering from the delivery when the neonatologist came into the room to report the worst news I have received in my lifetime. I remember that I was so out of it and my delivery nurse nudged me and said “Farah, you need to pay attention to what she is saying.” I was distracted.
While pregnant with my second child, I experienced a severe upper respiratory infection, fatigue, fever, and just couldn’t beat the illness. I just attributed it to being pregnant and raising a toddler. After several trips to the doctor and hospital, I was told that I had bronchitis. No one even suggested that I could have had a CMV infection...
Only 13% of women have heard of CMV. More children have disabilities due to congenital CMV (cytomegalovirus) than other well-known infections and syndromes, including Down Syndrome, Fetal Alcohol Syndrome, Spina Bifida, and Pediatric HIV/AIDS.
CMV awareness and education can help to prevent birth defects and developmental disabilities.