Avery’s Story"Avery is our happy, chatty, one-year-old baby girl..."
She is adored by her three-year-old sister Brenna, who in typical older-sibling fashion wishes they could play more together.
But Avery is not a typical one-year-old. She rarely rolls over and cannot sit up on her own. She cannot hold her own bottle or feed herself. It is a daily struggle to get her to eat enough to grow. She is prone to seizures. Developmentally, she is five months old.
These issues - along with many others - are the result of Avery's congenital CMV.
At our 20-week ultrasound, the test detected a problem with Avery's brain development. For the next several weeks, the doctors tried to figure out what exactly that problem was. Even though CMV was not considered a leading culprit at the time, it was put on the list of issues to check through one of my blood tests.
I tested positive. I then underwent an amniocentesis to confirm the presence of CMV in the fluid surrounding Avery. That, too, was positive. I had likely contracted the CMV about one month into the pregnancy, and the likely source was Brenna, who probably contracted it at daycare. Avery was confirmed to have it at 28 weeks gestation.
I was lucky to be able to meet with a CMV specialist and underwent two rounds of an experimental IV treatment of Cytogam with the hope that it would reduce the effects of CMV on Avery, but we will never know if it was effective.
I had an ultrasound every two weeks for the remainder of my pregnancy to monitor her development, and we met with the NICU before she was born to talk through potential issues we could face when she was born. Would she breathe on her own? Would she eat on her own? There were many unknowns.
Avery Jo Saari decided to join our family on June 5, 2008 (a bit earlier than expected, just like her sister). We eagerly waited, as did the NICU team, for Avery to take her take her first breath. She cried, and we cried in relief. We held her for a few minutes before she was taken to the NICU. She looked like a perfectly healthy baby. Her weight and height were average - 6 pounds, 5.5 ounces and 18.3 inches.
Avery was put in an isolation unit so that she wouldn't expose other babies to the CMV virus. She was also given an antibiotic through an IV to prevent infections and was given oxygen for CMV-related lung issues. She underwent many tests, including an MRI and full ultrasound on day two.
On day three, we met with Dr. Schleiss, a CMV specialist, and Avery's neurologist, who told us that she had significant brain damage. (In their estimation, her brain stopped growing at about 28 weeks gestation.) They could not tell us what this damage would mean for Avery's future - only that "Avery will do what she will do when she will do it."
After spending 13 days in the hospital, Avery came home and met her sister, who was 22 months old at the time. Avery remained on oxygen for several weeks. She also received a ganciycloviere treatment via IV twice a day for the first six weeks of her life in an attempt to treat the CMV.
When she was eight months old, Avery had her first Gran Mal seizure. She has had many seizures since, which cause her to arch her back, extend her limbs, and lose her eye focus. She is on two medications to help control the number and severity of her seizures and one medication to treat her high blood pressure - all liquids given orally twice a day by syringe.
Avery visits an ophthalmologist regularly because she has cortical blindness, which prevents her brain from processing what she sees (based on a reaction test), and a macular coloboma - a hole in the retina of her left eye. She goes to occupational therapy once a week, physical therapy once a month, and vision therapy once a month. She also undergoes hearing tests every six months, which involves sedation in the hospital. To date, she has some hearing loss in her right ear.
Avery and Brenna spend three days a week at a daycare center close to home. This allows Matt, who was laid off in April 2009, to job hunt and do consulting work from home. I continue to work full-time.
Raising a developmentally challenged one-year-old and a busy three-year old, we just try to take things as they come. And we focus on what Avery can do, not on what she can't.
- Submitted by her mother, Jodi Saari
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
more parents stories Share your CMV Story
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..."