Meet the Founders: Sara Doutre
In July 2010, we found out we were expecting our second baby. Because of a liver complication and an unscheduled c-section with our son Liam in 2009, I sought out a specialist in high-risk pregnancies. In order to receive the best possible care, I drove an hour each way to all of my prenatal visits to be seen at the maternal fetal diagnostic center at the University of Utah. I have a type A personality and was very proactive during my pregnancy. I took the recommended amounts of folic acid to prevent spina bifida. I participated in the recommended screenings for other markers of birth defects. I read every pamphlet provided to me by the doctors office.
Due to my liver condition, I began twice-weekly non-stress tests at 30 weeks. Daisy seemed to be sleepy and wasn’t responding as well during one of the tests at 33 weeks, so we had an extra ultrasound. The ultrasound showed enlarged ventricles in Daisy’s brain. We followed up with our doctor who assured us that there was nothing we could do and the best thing was to wait until she was born to try to find out what caused the enlarged ventricles.
Daisy Emma was born on March 9, 2011. The c-section was routine, Daisy looked beautiful and she nursed right away. On March 10, she had a head ultra sound that revealed some possible cysts or calcifications in her brain and on March 11, she had an MRI at Primary Children's Medical Center. The results of the MRI were non-conclusive and the pediatricians told me that it was likely I had gotten sick during my pregnancy and that it may have caused a "hiccup" in her development, but that there was nothing to worry about. I asked if I should follow up on the MRI and was told that, unless she showed signs of headaches or swelling, there was nothing to worry about. During our five-day hospital stay, Daisy also had a newborn hearing screening-- she actually had several because she just wasn’t passing them. I was assured that it was simply amniotic fluid in her ears and there was nothing to worry about. On March 13, we came home with a healthy baby.
Over the next two weeks, we had several appointments with our pediatrician. When Daisy was two weeks old, we had a follow up hearing screening. Daisy didn’t pass the screening and so the audiologist performed an ABR. The results of the ABR did show some mild loss, but the audiologist said that it may have been because she woke up during the ABR and that we didn’t need to worry about it-- just to follow up when she was one year old for sound booth tests. We discussed the results with our pediatrician and he agreed. I again asked about any possible connection to the MRI and was told there was none.
Daisy developed typically for the first year. I knew she could hear, but there were times when I questioned how well. Sometimes, she’d be in her crib talking in the morning and I’d walk in, talking to her. When I got in front of her, she'd be surprised to see me. I chalked it up to paranoia. We had Daisy’s hearing tested again at one year in the booth and the audiologist had no concerns.
That spring and summer, Daisy had several ear infections. We were referred to an ENT for follow up at 16 months. At our first appointment, booth testing showed some hearing loss. The ENT quickly moved to put tubes in to see if they would help-- and to test for CMV. Immediately after reading her chart and seeing the MRI report, he suspected cCMV. Daisy got tubes in August 2012 and the same week, we found out she had the antibodies for CMV.
Researching CMV was shocking, over and over again. I was a special education teacher. My parents both have PhDs in special education. I was a well-informed mom and had red tens of books on pregnancy. Why had I never heard of CMV??
In September 2012, Daisy had a sedated ABR that showed mild to moderate hearing loss in her left ear and severe-profound hearing loss in her right ear. By November, she had a profound loss in both ears. We were blessed to immediately be surrounded by great support. We were referred to an ENT at the University of Utah who is familiar with CMV and has administered the Vanciclovir treatment to older babies. Daisy had six weeks of Vanciclovir in Fall 2012. He also was able to obtain her dry blood spot and test it for CMV. It showed evidence of CMV at birth, so he was able to diagnose her with cCMV.
Daisy had bilateral cochlear implant surgery on December 7, 2012. She has since had them reimplanted. Daisy received early intervention and is now in preschool. While she has make great progress, she is still behind and we are hoping that she will continue to outgrow some of her limitations.
I battled a wide range of emotions after learning of Daisy’s CMV. Guilt, anger and depression come and go still, many years later. I have tried to channel those emotions into raising awareness about CMV. With Daisy's grandmother, a Utah legislator, we passed the first CMV legislation in the United States. I'm proud to be deeply involved in CMV non-profit work as well and am studying CMV as part of my PhD work.
CMV has changed our lives. If I could go back and prevent Daisy from getting CMV during my pregnancy, I would do it in an instant. My goal is to empower other women with the knowledge that they can prevent CMV in their babies.
Category: Community, "Parent Perspective"