Peyton’s Story {Cytomegalovirus :: The Silent Virus that Women Need to Know About}

The first time I learned about cytomegalovirus I was an undergraduate student at Baylor University. I sat in my dorm room studying for an exam and probably wrote the word on a flash card next to the other “TORCH” viruses while studying for a test. Cytomegalovirus {or CMV} wasn’t scary to me though. I had never heard of it before and it was not near as terrifying as my knowledge of rubella, herpes, and HIV/aids was, which made up the other letters of TORCH. So I forgot about it as quickly as I had memorized it for my exam.

Fast forward 6 years. I was now a young professional with a master’s degree in speech pathology. I had also gained a wonderful husband and a perfect little red headed boy. CMV reappeared in my life under “background information” in the hundreds of speech and language evaluation reports that I was now writing. You see those TORCH viruses now affected many of the children I worked with on a daily basis. CMV is a very common cause of hearing loss, and I now exclusively treated children with hearing loss. It was a part of my daily vocabulary… “What’s her etiology? CMV”… “Does he have any additional disabilities? Yes, he’s a CMV baby.” At least twice a week the word came out of my mouth, and I treated the effects of CMV on a daily basis.

Peyton's CMV Story (1)A few more months passed. My husband returned from a year-long deployment, and we decided it was time to grow our family. In mid-December we learned we were pregnant with our second child, and we were thrilled. And then a conversation with a coworker changed our lives.

One day in January I overheard one of our administrative assistants talking about scheduling a client.  She walked in to my office and said, “Does Joey have CMV?” Three speech pathologists replied in unison, “Yes, why?” She walked out of our office chuckling to herself saying, “I knew it, Julie is pregnant.” I was so confused. Why did that make her think Julie was pregnant? That afternoon I asked my supervisor to explain to me what I had heard.

She told me that herself and two other coworkers of mine were CMV seronegative, meaning they had never had CMV and weren’t immune to it.  They chose to protect their unborn babies from CMV by limiting their contact with children with CMV while they were pregnant. Then, she asked me a question that I could compare to the “shot heard around the world.” She asked if I knew my own CMV immunity status. Huh? What? They can tell you that? You mean I could get it? I’m sorry, what is CMV? I thought it just caused hearing loss? I didn’t think it could affect me?!

The next week I went to my OB appointment and requested a CMV test be run on my blood. I wanted to know if I was immune. Just to ” be safe.” My doctor told me that she didn’t think it was a concern but that she would run it anyways. Because I had “increased exposure.” I NEVER thought it would be positive. I just wanted to cross my t’s and dot my i’s.

A week later my doctor hadn’t called with the results. I thought, “Oh that probably means they are negative.” So I called one day from my desk at work because I didn’t think it would be anything life altering coming from the other end of the line. Boy, was I wrong. When I called, the nurse put me on hold. She said she had my results but had to get the OB on call to give them to me. Right then and there I knew something was wrong. They told me to make an appointment with a Maternal Fetal Medicine specialist as soon as possible. They also asked me to reconsider our refusal of the 12 week NT scan because they needed to scan his little body for signs of CMV in-utero. They told me “it was probably nothing” but that I should get a second opinion from a specialist.

One thousand thoughts entered my mind. I really don’t know what I said that day on the phone; I’m sure my poor coworkers could tell you. I was shocked, horrified even. How could this happen to ME? I knew about CMV. I treated kids who had it. There wasn’t suppose to be anything wrong with this pregnancy. This was my rainbow baby after a miscarriage just a few months before. What were the chances?

I, of course, started inhaling information off the internet like anyone would have done. I found few articles about having CMV during pregnancy, even fewer about what to do when you knew you had it, and way too many about the effect CMV had on kids. I also came across a specialist at Texas Children’s Hospital. She had been religiously replying to the comments people left on a blog she wrote about CMV for several years… All I could think is that maybe she would want to help me too. I shot off a frantic, panic filled email late that night – by 9am the next morning I was on the phone with Dr. Gail Demmler. She advised me about what my next steps should be. And by the end of the day I was set up for an appointment with one of her colleagues for a consult.

My original OB didn’t understand my panic. She thought it was “no big deal” that my results were positive. But something told me otherwise. She said we could “discuss termination” if follow-up blood work was also positive but never once mentioned that there was anything I could do to help my unborn child. After hearing I had a consult elsewhere and wanted to switch my provider, she told me through her nurse that it was “probably for the best that I transfer my care.” She wasn’t mean or a bad doctor, she just had no idea how to treat me or my baby.

Peyton's CMV Story (2)At my first appointment at Texas Children’s Pavilion for Women,Dr. Karin Fox gave me the run down on what being CMV IgM positive during pregnancy meant. We had an hour long ultrasound, genetic counseling, and blood work. Our baby was, so far, healthy. But in my head, I was a ticking time bomb. I was carrying something that I knew could hurt my baby. My body was failing both him and I when we needed it most. Despite all that, I walked away from that appointment with something I thought I’d never have again – a glimmer of hope.

There was a treatment, albeit experimental, that might help my baby. Let me say that again a little louder…THERE IS AN IN-UTERO TREATMENT FOR CMV!! This was amazing news. There was something we could do. We didn’t have to just sit and wait for him to get CMV. We weren’t helpless.

I am a doer, a fixer, a therapist, and I was pretty sure that sitting around staring at images of my unborn baby and examining it for signs of CMV was going to have me institutionalized.

Time has passed quickly from that 13 week appointment to now. At 15 weeks my blood work came back with low CMV avidity making my CMV status a “presumed primary infection.” This put my chances of transmission to Sawyer somewhere around 40%, not really a reassuring number. At 18 weeks I had an amniocentesis. I’ve never so quickly volunteered for a huge needle to be shoved into my uterus before. The decision was easy for me. Get an amnio, see if the baby has CMV. I was caught up in the statistics about amniocentesis and miscarriage for about 2 minutes.  But when the doctor explained that if the baby had it and we knew for sure that we could administer the life-improving CMV immunoglobulin, Cytogam, the risk of miscarriage seemed minuscule.

But I wasn’t okay with the thought of my baby possibly having CMV and us having to wait for the results and thus wait for the medicine. I lobbied hard for the use of Cytogam prior to confirmation. Just in case. We already knew CMV was raging in my system, so how could the medicine hurt? Dr. Fox made sure I understood what I was asking.  There is not a large body of research that supports the use of Cytogam to prevent transmission of CMV, only research that supports the use of it in reducing the effects and viral load of the baby and mother once it was already confirmed. Plus, it was costly and there could be side effects like there are with any medicine.

I assured her that I knew the risks and was an educated, informed patient and I STILL WANTED THE MEDS!! {I’m kind of stubborn, what can I say.}

Peyton's CMV Story (2)So, the day after my amniocentesis I spent 11 thrillingly, fun hours hooked up to an IV in labor and delivery getting an IV infusion of Cytogam.  My mom and I showed up at the hospital with our checkbooks expecting to write a check for tens of thousands of dollars {our entire life’s savings} in the event that it was considered experimental and not covered. We found out that my insurance company was covering the whole thing.  Thank God!

I didn’t have any negative reactions to the Cytogam. It is a blood product and sometimes people have issues with those, but I lucked out in that respect. I slept so much easier that night knowing we did something. That maybe, just maybe, even though there wasn’t enough evidence yet to fully support it, the medicine would help keep my baby boy Sawyer safe.

The following day even more relief came. Our results from the amniocentesis were back. And they were negative. They couldn’t find a single trace of CMV in little Sawyer’s urine at 18 weeks gestation.

I cried on the couch by myself at home for a good 5 minutes before I thought to call my husband. This was the best news we could have hoped for.

It’s been 12 weeks since then. I’ve had 3 more ultrasounds since that day.  I haven’t had any other administrations of Cytogam because Sawyer is healthy right now. He’s in the 85th percentile for overall growth and active as can be. I am and will be closely monitored until the end of my pregnancy because transmission of CMV is confusing, and it’s still possible that Sawyer could get it.

The final sigh of relief won’t come until after Sawyer is born. He could still be born CMV positive. And while my doctors, family and friends like to use words like “in the clear” and “out of the woods” I just haven’t been able to relax completely yet. Sawyer will need to have blood and urine testing to determine his CMV status shortly after he is born. If he is negative and passes his newborn hearing screening, I’ll probably still have his hearing checked frequently for the first several months and get some follow up blood work done. Just to be safe. If he’s positive…there are treatments for infants. So we will entrust his care and treatment to Dr. Demmler and her team, and take things one day at a time.

Until then, we will continue praying that we knew in time and that we did enough to keep sweet Sawyer from getting this terrible virus. We will also pray that others will have this same opportunity, the opportunity of in-utero diagnosis and treatment which is so uncommon, but shouldn’t be. Maybe one day things will be different. Hopefully, some of you reading will benefit. I’m so thankful that my coworkers’ knowledge allowed me to be one of the few who “knew in time.”

Peyton's CMV Story (1):: Photo Credits – Ariel Starke Photography  ::

In honor of National Congenital Cytomegalovirus Awareness Month, we are dedicated to spreading awareness and doing our part to Stop CMV.  To read more real life stories of how CMV is affecting moms across Houston, please click here.  To read tips on preventing CMV for you and the ones you love, click here.  Then, we urge you to share this series and help us to spread the word about this preventable disease too!


Peyton's CMV Story - Peyton's BioAbout Peyton S.

Peyton was born and raised in west Houston. She earned her Bachelor’s Degree in Communication Sciences and Disorders from Baylor University in 2008 and her Master’s Degree in Speech Language Pathology from the University of Texas at Dallas in 2010. She is a pediatric SLP specializing in treating children with hearing loss at The Center for Hearing and Speech in Houston. She lives in Spring Branch with her husband William and two year old son Levi. She is expecting a son named Sawyer in August of 2014 who is the product of a CMV-positive pregnancy. She is driven to spread CMV awareness not only due to her own experiences with it in pregnancy, but due to her experiences with her clients with CMV at CHS who melt her heart everyday. 

5 COMMENTS

  1. My name is April and I am 28 weeks pregnant with a positive CMV blood test as well as a positive CMV amnio for our little boy. We are currently in a battle of appeals for IV Cytogam with our insurance company and were wondering if you could share what insurance you had that covered your treatment? We want to show our insurance co how other companies are covering the cost. Please get back to me asap if you can. Thank you for sharing your story. We are hopeful, we just want to get the infusions going.

  2. Hi there!! I’m wondering if Dr. Demmler is still practicing at Texas Children’s.Hospital, or anywhere in fact.
    My 16 week old baby boy has just received an extremley tere neurological disorder diagnosis of Bilateral Polymicrogyria… I feel so certain that his is attributed to myself possibly having an CMV infection during the early stages of my pregnancy. I have messages in which I described precisely the symptoms mentioned, as well as tested negative for flu & strep.
    I wish I could run out this moment and hey my son tested and begin anything provocative in undoing what has been done! Why, why is it not mandatory for this test… I had no idea and my baby boy will live a life full of limitations, hardships, disadvantages… and Lord help me, that is if he lives a long life!!!

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