Our Story

  • How We Were Diagnosed
    • Our road to a diagnosis was a long one. My husband had mono like symptoms. After four doctors and many mono spot tests, a doctor finally ran a full panel bloodwork. They then called us and said he had “two viruses” and he would be fine if he just “slept it off”. Our son then became sick that week. Not knowing what was wrong with him or my husband, I called my husband’s doctor and asked to have his bloodwork sent to my son’s pediatrician. She spent the first 20 minutes of my son’s appointment telling my husband that he had CMV and Mono. CMV can cause mono, but it also makes the mono spot test come back negative. This is rare, but my husband was extremely run down because he was working a full time job by day and renovating our new house by night. For this reason, the CMV made him very sick. My son, on the other hand, simply had a sinus infection. The next day I started coughing, so I emailed my OB and asked if CMV or mono were a problem in pregnancy. They brought me in the next day for testing, as it certainly IS a problem. They ran both the IGM and IGG. Both came back positive. IGM means that I have had CMV at some point in my life, while IGG means that I have had it recently. See the terms for more specifics on these. They then ran the avidity. Mine was .36. According to our specialist, this meant I had the Virus sometime in the last 2-4 months.

      They then wanted to wait 6 weeks to do an amniocentesis because they believed I had CMV when I began coughing and it takes 6 weeks for the virus to show in an amniocentesis. We disagreed with their timeline based on the avidity and fought for an amnio right away. It came back positive, without a value assigned to it. We called the labs back and requested a value. It was 2 million plus. (They stop counting at 2 million).

      The only treatment recommended to us was an out of state abortion because they said our baby had no chance. Luckily, we had done our research and knew there were other potential options. We argued for treatment and eventually we got it. The University of Michigan hospital was
      the first place where they knew more about CMV than we did and that was such a relief.

      They kept tabs on the baby through weekly ultrasounds to see if there was any reason to deliver early or if any complications had shown themselves. CMV can cause the amniotic fluid to decrease. We also did an MRI on the baby while I was pregnant. They thought there was a
      small chance that they saw the beginnings of polymicrogyria. This is a cognitive disorder that causes mental retardation and seizures.
  • My Symptoms
    • While I was NOT diagnosed at the time I had CMV, after reading several people’s stories, I determined that I had CMV when I was about 6 weeks pregnant. I had 2 very identifiable symptoms:
    • ITCHING: Uncontrollable, drive you crazy itching with no identifiable source. After some research, I have learned that this itching was due to elevated liver enzymes caused by CMV.
    • EXHAUSTED: I was so tired that I felt like I couldn’t move. I had never been so tired in my whole life. I would fall asleep mid conversation with my husband. I told him it was more like a nine month pregnant tired and that if my whole pregnancy went this way, I would not make it. I would just have to go to bed for nine months and come out after the baby was born!
  • Our Treatment
    • We received 200 iu of Cytogam per kilogram once a month for 5 months.
    • I started taking Valganciclovir the last 2-3 months of my pregnancy.
    • I felt no side effects, even though I was told to expect every side effect on the bottle for the Vanganciclovir, due to the fact that it is such a high dose.
  • Our Outcome
    • Perfect! Our baby was tested at birth for sight, hearing, plattlets for liver functioning, MRI for cognitive impairments. He passed all these tests with flying colors!
    • He was tested for CMV and came back at the lowest detectable level in the blood. We believe if we had tested through urine rather than blood, it would have come back negative.
    • We chose to treat with Valganciclovir for the first 6 months anyway to protect his hearing, since there have not been any known side effects to date to doing this.
    • We monitored his bloodwork weekly at first, then monthly. At the end of 6 months, his CMV levels were completely undetectable.