Daniel’s Story"My son, Daniel, was born over 26 years ago when there was very little known about CMV. And no internet to do research..."
I had an uncomplicated pregnancy and normal delivery. He weighed 8 lbs 5 1/2 oz at birth and showed no signs of anything abnormal. At 6 months, he still had a hard time holding his head up and wasn't yet starting to try and sit alone. But he nursed, slept and smiled like any other baby should. I lived away from all of my family so had no one that suggested that something might be wrong.
It wasn't until his 6 month well baby check up with a new pediatrician that they ordered blood tests, measured his head and acted as if something was very wrong with him. Of course, we had never heard of CMV. That's when our world changed as we knew it. We started an early infant program soon after his diagnosis and started physical, occupational and speech therapy. My life was now consumed with taking care of his needs and attending his appointments.
At first, we weren't sure what CMV meant for his future, so we sort of thought that he might out grow it. But as his chronological age grew, his developmental stage didn't change much. He did make progress, just not at a very fast pace. He sat alone at around 12 months of age. When his first brother was born, he was just over 2 1/2 years old. That was probably a very good time for him to have a sibling around. They both learned to crawl around the same time, although at a different pace. Then, when he was almost 4 years old, his second brother was born.
It was difficult for me to care for all three of the boys, but I know that it was very good for Daniel to have the stimulation of his brothers. Since it was difficult for him to be active in their games and playtime, I would carry him and help him take his turn. We went to parks and I helped him on the slides or swings. He enjoyed doing most of the "normal" activities but he had a short attention span so that sometimes prevented the rest of us from being able to stay. Daniel also had some sound sensitivities, so he couldn't tolerate a lot of noise. That was not easy when we would try to go to church, a ball game or even his preschool program when they sang. His crying usually made us have to leave any of those situations.
He didn't walk until he was about 5 1/2 and then, not very well so he still needed to be carried a lot. When he was around 10 and still in elementary school, we started to try potty training. One of his teacher's decided that it was time to give it a try so we both read a book and modified the program to fit Daniel's needs. It took a lot of work and dedication and a lot of accidents, but he was able to be fully toilet trained.
We were never sent to a neurologist or an infectious disease doctor. When he still had a soft spot in his head, they did an ultrasound but that only told us that his brain was all there, just not functioning properly. He has never had a MRI of his brain but I assume that he probably has some calcifications since that seems to be what most kids have. The only follow up that the pediatrician recommended was with a cardiologist since he has a heart murmur. Now, I'm kind of surprised that more tests weren't done as he grew. It could be because he was actually a healthy boy.
Daniel has been a well-liked and happy guy for most of his life. He tends to attach himself to a staff member, whether it be at school or a day program. He is very social but wants to do what "he" wants to do and is not always cooperative. He is still nonverbal but can say a few words...Mama, yeah, uh uh for no. He has used some signs over his years but now prefers to gesture or go get whatever it is that he wants. When he wants his TV channel changed, he brings me the remote. Or when thirsty, brings me a cup. He is smart, just not capable. He needs all daily living activities done for him.
Daniel finished high school in May of 2005. I thought he would flow right into an adult program. But, I was wrong. Our state has a huge waiting list for services for children and adults with disabilities. We had been on the waiting list for years already. I contacted our governor, state and local senators, and anyone else that I thought might help before we were finally given a waiver to pay for an adult day program. He was home with me 24/7 for about 6 months, which was very hard on me. His behavior is sometimes overwhelming. When he finally received the waiver, it wasn't the type of waiver that he actually needed that would pay more (because of his behavior and not being able to do things on his own), so he was limited to attending 2 days a week. Eventually, it went to 3 days a week and finally, they got the correct waiver with enough money for him to attend 5 days a week. But, his behavior on the bus had gotten him kicked off, so I had to transport him.
My own health had started to deteriorate during the years of taking care of him. I was eventually diagnosed with fibromyalgia, thoracic outlet syndrome and peripheral neuropathy. Again, I started writing the legislators in our state and eventually got a waiver for residential care. Daniel moved into a wonderful personal care home with two other young men around his age in March of 2007. He continues to do well and his caretakers are WONDERFUL! While he will never be able to take care of himself, he is as independent as he will ever be.
- Submitted by his mother, Diane Hoffman
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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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...
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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..."