"Where do I start? My pregnancy started out normal and uneventful, everything seemed to be perfect..."
I then got the phone call that would change the rest of my life!
A few days earlier I had a quad screen done. I didn't think much of it. They were calling me to tell me that I had a possible Down Syndrome baby. They scheduled me for an ultrasound, at 18 weeks where we found out that we had another little girl on the way. We also found out that she had Eccogenic Bowel and Intrauterine Growth Restriction. They put me on bedrest and had at least 1, sometimes 2 ultrasounds a week. After that it was a pretty uneventful pregnancy.
Leah was induced at 36 weeks. She was born 1/15/08 weighting 5lbs 15oz. She was beautiful! We soon found out that she did not have Down Syndrome, but she did have Petechi all over her body. They took her to the nursery where they did some blood work where they found out that her platelets where low. Extremely low at 17,000 (normal range starts in the 200,000).
Within 2 hours of being born, they where transfering her to another hospital with a level 2 NICU, 20 minutes away. I was discharged and went to that hospital also. When we got there we were told that they were running a lot of different tests and that some took a few days to come back. We were told to just wait and see.
Leah received 4 platelet transfusions. She just wasn't getting any better. So they decided to transfer her to another hospital. While being transferred to this hospital we found out that she was CMV positive. What did that mean? What was CMV? We had never heard of it.
They continued to give Leah 4 more platelet transfusion. We saw many different specialists. They just continued to tell us that they didnt know what would happen with Leah. We then spoke to a wonderful man who finally knew something about CMV. He told us what CMV was, what it could mean for Leah, and what options we had. He told us that Leah had an enlarged liver and spleen. He said that this is most likely where all of her platelets were going, her body was eating her platelets alive. He then told us about this Chemo therapy medication that they can give that can stop any further damage being done, especially hearing loss and blindness- it was called Gancyclovir.
After considering it, looking at all the positives and negatives we decided that we would try it. They had to place a PICC in her to receive this medication. That night the PICC was placed in her scalp. They started her medication and within 2 doses, her platelets began to stabilize, her liver and spleen were already receeding in size and she seemed to be taking the medication very well.
Leah received a total of 8 platelet transfusions.
The next day, we had an ultrasound done on her brain where they found spots of Calcification. She then went in for an MRI where they found enlarged ventricles, 4 spots of calcification, and white matter. We also learned that Leah's brain was smooth, a normal brain has bumps and ridges in them, Leah's does not.
Leah also received a hearing test that she failed in the hospital and an evaluation from the Physical Therapist. PT had very little concerns at this time, but referred us to come back in 2 months.
Leah was in the hospital a total of 17 days. Around 13 days old, I asked if I could take her home on medication. And the hospital agreed if I was willing to get Chemo certified and learned how to give her medication to her. Four days later she came home.
We had doctor's appointments everyday. It was very hard but not as hard as having her in the hospital.
Over the next month and a half, we had lots of doctors appointments and not a lot of answers. Everyone kept saying we will know more at 6 months, we will know more at a year.
I finally learned which appointments were important and which ones were not. At 2 months, we went in for a hearing test. We then learned that she had moderate to severe loss in her right ear and severe to profound loss in her left. She was fitted for hearing aids and I am happy to report that we got them on 6/13/08, Friday the 13th! She is responding well and is learning that we live in a noisy world. We are also learning SEE signing. Leah is watching our hand and mouth and is very observant of what we are doing. She has yet to learn any, but that will come with age and time.
We also saw a Neurologist when she was about 2 months old who diagnosed her with Cerebral Palsy. Leah then began seeing a Physical Therapist who sees no delay other than verbal with Leah and thinks that she should get a second opinion.
As for her eyesight, she has a lot of hemmoraging from being born, but it has cleared up over time. As her platelets stabilized, her body could finally begin to heal. We were cleared from the eye doctor at 4 months of age. He didn't want to see her for 1 year.
As for the Gancyclovir, she was treated for 7 1/2 weeks. She had treatment 2 times a day over 1 1/2 hours. The virus was dying. When she was born, her virus load was at 65,000. 3 weeks later it was 140. After she was taken off the medication it was always a possibility that the virus could reactive within her system and we would have to treat again. And that is was happened.
Four weeks later all of her symptoms that she had at birth were back. Her virus load this time was 1.5 million. She was a very sick little girl. We wondered if we had done the right thing by treating her. We placed another PICC and began treatment again with Gancyclovir. 3 weeks later the virus load was at 540. We had a sigh of relief. After another 3 more weeks of treatment we switched from IV therapy to and oral medication called Valgancyclovir.
She is currently on this medication and will continue to be for a total of 6 months. Our hope is for the virus to go dormant within her system and give her body enough time to build its own immune system so that she can fight the virus herself without any further damage being done.
Leah is a happy little girl and loves life even though life isn't always fair. It is still day by day with her. But the more we love her the better she gets. She is our miracle and we love her dearly.
- Submitted by her mother, Lacey McCauley
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..."