My Story

Our Story By Jodi Saari

Avery is our happy, noisy, two-year-old little girl. She is adored by her four-year-old sister Brenna, who in typical older-sibling fashion wishes they could play more together. But Avery is not a typical two-year-old. She rarely rolls over and cannot sit up on her own. She makes lots of noise, but has yet to speak a word. She does not drink from a sippy cup or feed herself - most of her food is provided through a feeding tube. She has multiple seizures each day. Developmentally, she is five months old. These issues - along with many others - are the result of Avery's congenital CMV. Congenital CMV - or cytomegalovirus - causes more children to have disabilities than Down syndrome, fetal alcohol syndrome, spina bifida, pediatric HIV/AIDS, and other more well-known congenital infections and syndromes. Congenital CMV is also the leading cause of hearing loss in children. Yet we had never heard of CMV until the doctors confirmed that Avery and I had it. And while pregnant women are routinely tested for a wide range of fetal abnormalities, CMV is seldom on the list of things checked. We found out almost accidentally.

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 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.) Soon afterward, my husband Matt and I met with Dr. Mark Schleiss, a CMV specialist at the University of Minnesota and a world-renowned CMV researcher. Dr. Schleiss hopes to eventually develop a vaccine for CMV, which will help prevent pregnant women from contracting CMV and passing it on to their unborn babies. CMV is a common virus; in fact, most adults have CMV in their bloodstreams. It only represents a danger to pregnant women and transplant patients. And by the time I felt cold symptoms coming on while I was pregnant, the damage had been done. There is no proven treatment for pregnant women who have CMV. I did undergo two rounds of an experimental IV treatment 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 first breath. She cried, and we were relieved. 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 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 ganciclovir treatment via IV twice a day for the first six weeks of her life in an attempt to treat the CMV and specifically help to mitigate hearing loss. When she was eight months old, Avery had her first Gran Mal seizure - a common CMV symptom. 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 through her g-tube twice a day. For the first 18 months of her life, Avery struggled to get adequate nutrients due to the reflux caused by CMV. On December 15, 2009, doctors performed a Nissen procedure on Avery to prevent reflux and inserted a g-tube for feeding and medication purposes. Avery's weight increased from 16 to 37 pounds in the next 11 months. 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 (which may or may not be caused by CMV). She goes to occupational therapy, physical therapy, and speech therapy once a week, and vision therapy once a month. In December 2010, she started getting regular botox treatments to help relax the muscles in her legs so that she can more easily bend her ankles. She was also fitted for orthotics to help straighten her ankles so that she can begin to put weight on her legs again. After a sleep study, Avery had surgery in January 2011 to remove her tonsils and adenoids so that her breathing would be less obstructed and she would be able to sleep better. Avery and Brenna go to a daycare center close to home. This has allowed Matt, who was laid off in April 2009, to work from home and to start his own business. I continue to work full-time. In February 2011, Avery got her first wheelchair. We're thankful for her added mobility, because she's getting too heavy to hold! Now that she has a wheelchair, Avery has started going to school at the district's special education center two mornings a week. At the classes, Avery receives therapy and interacts with kids whose needs are similar to her own. A great big sister, Brenna likes to help Avery get onto the school bus in the morning and loves pushing the wheelchair around the house. Mother Teresa said, "The child is God's gift to the family. Each child is created in the special image and likeness of God for greater things; to love and to be loved." Avery is our baby. Brenna adores her sister. Raising a developmentally challenged two-year-old and a busy four-year old, we just try to take things as they come. We don't know exactly what Avery's future holds, but we want to give her every opportunity to grow and be happy. We just focus on what Avery can do, not on what she can't.

Because of Avery, we have been given the opportunity to raise awareness about CMV. We hope that more people will become aware of CMV's dangers to unborn children, and that one day, there will be a vaccine for pregnant women, so that unborn children are protected against this life-altering virus.