Leah Nicole’s Story"Hello, my name is Erica Layne. I am from South Pittsburg, Tennessee but had my daughter in Chattanooga, Tennessee..."
My daughter, Leah Nicole Mitchell, was diagnosed with CMV when I was about five months pregnant after my amnio. I had no idea what CMV was. What was even more strange, there were two other women at my specialist diagnosed with CMV. We were due days within each other. We each went through percutaneous umbilical blood sampling (PUBS) of an Experimental Drug (name I can't remember at the time) and three or four IV's of the drug. The drug had a 50/50 chance of minimizing some of the effects of the symptoms. During my second PUBS, Leah heart rate decreased, and they induced labor. Needless to say, the drug had no positive effect and we got the bad news.
At the time of my pregnancy, my specialist told me I could be prepared for Leah being deaf. I was totally unprepared for what the doctor was getting ready to tell me.
Leah was 3 lbs 13 oz. She has Lissencephaly (smooth brain), Microcephaly (small head/brain), Intracranial Calcifications, and her Cerebellum is underdeveloped. She is on oxygen all day every day (1.5 liters). She was sent home on 5 liters of O2 and has made a very good improvement with her apnea spells. She has probable optic atrophy (vision) and we are unsure of her central auditory functions (hearing). When she was discharged from the hospital (with Hospice) she was feeding through og-tube. I then taught her how to take a bottle, but over the past summer she was throwing up everything and lost a total of 4 lbs. So we got off of Hospice, and went to Vanderbilt.
Now we are seeing GI, Pulmonologist, Surgeons, Neurology, and Radiology very frequently now. Leah had a swallow study and was aspirating her food and she has severe acid reflux and that was the reason for her throwing up all the time. September 23rd was Leah's surgery this year for her MIC*KEY button and Nissen. She gags a lot from the Nissen, but is a lot healthier and a lot more active that her weight is up and she is getting nutrients.
Leah was sent home on Hospice and wasn't supposed to make it to be a year old. Leah is off of Hospice and trying to talk, her vision seems a lot better, and she is 16 months old now. Miracles can happen. I was told by Leah's doctor when she was first born that teenage girls that make mistakes have to suffer the consequences. I do not feel like I made any mistakes.
I attend college at Austin Peay State University in Clarksville, Tennessee and manage school and motherhood just fine. I feel like I was meant to raise a disabled child, and Leah is the biggest blessing I have ever received. Watching how strong a baby so sick can be, makes you grateful for everything and so much stronger yourself.
- Submitted by her mother, Erica Diane Layne
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..."