Hannah - Mom of 2 - CMV Awareness - Texas, USA
Updated: May 28
My husband, Jed, and I met in a way that I believe can only be described as fate. About 7-8 years ago, we both moved to Houston, Tx (I from Austin, he from Virginia) in order to be closer to our significant others at the time. Both of our relationships only survived about 6 months after moving, leaving us both single in a new city. After some time, a couple of mutual friends invited us both out to a group dinner, in hopes of playing matchmaker. We were the only two single people there and it was quite obvious that it was a set-up. It was definitely an awkward night, that we still laugh about today, but it worked! He asked me out to dinner, and as they say, the rest was history.
About a year later, in September 2013, he completely surprised me when he was waiting for me at my parent's house, down on one knee, asking me to marry him. We got married that following July and knew we wanted to wait about a year before starting a family. So the next summer, we moved out of our townhome in a hip neighborhood and bought a home in a family friendly neighborhood. We were blessed to fall pregnant fairly quickly and found out we would be having a little boy. Besides pretty bad morning sickness, I had a very healthy pregnancy. So at 35 weeks, I didn't hesitate driving the 2 hours to my parents house for a baby shower being thrown in my honor the next morning. I had been there about 2 hours, when my water broke.
Our son, William, ended up being born in the small town hospital, right smack in the middle of the baby shower. It was scary and overwhelming and not at all how I had planned. My husband had to drive in from out of town (he made it in time for the birth) and everything was so unknown. I didn't have my hospital bag and my mom scurried to set up her house and buy everything a newborn would need so that we could stay there for a couple days before making the drive back home. Thankfully, I had a fairly easy labor with no other complications, and he only required a short 2 day stay in the NICU for jaundice. He quickly made up for his small birth size, and is a very active, healthy 2.5 year old today.
When he was a little over a year, we started trying again for his sibling. When he was 17 months, we had a very early miscarriage. I already felt insecure that my body let me down with my first pregnancy with PPROM, and this miscarriage also made me feel like I just wasn't good at being pregnant . But only a month later, we got pregnant again. We found out around 12 weeks through the NIPT that she was a "healthy" girl! I was so excited we were having a girl, and more importantly, that she tested negative for all of the various chromosomal disorders. I also knew that this time, I wanted to do it "right." William's birth experience often made me sad that it wasn't the normal experience. So I had my hospital bags packed and had cute matching robes and swaddles, and was determined to make up for my first experience.
My 20 week anatomy scan was perfect and my growth scan around 33 weeks also looked good: she was measuring around 4 pounds, which meant she should be around 8 pounds at birth. As my third trimester went on, I was getting anxious as I knew there was chance she would be early as well. I had also been having a ton of cramping and contractions but they always stopped and I was assured it was normal. When I was finally 39 weeks, my doctor told me to let her know when and if I would want to be induced. As controversial as being induced is, I felt maybe I should keep waiting. However, I kept having a nagging feeling that I wanted to get her out and make sure she was okay. I truly feel this was my intuition. I know that I cannot go back and dwell on every little piece of my pregnancy, but I truly felt something was off towards the end. I was induced at 39 weeks and 6 days.
Evan struggled with labor. Her heart rate kept dropping and we kept having to stop the pitocin. When they broke my water, they also noted that there was meconium. We kept trying for awhile but her heart rate ended up dropping so low, we were quickly rushed to a c-section. I was already terrified, but when they pulled her out, I kept yelling “she’s not crying, she’s not crying”. The anesthesiologist told me give her a second, and she did let out a small cry. All of the doctor’s insisted it was fine and called out her weight: 5 pounds 13 ounces. I immediately knew something was wrong.
I kept saying she’s not supposed to be that small but, again, everyone assured me it was fine and she was given an Apgar 9/9. The nurses told us that they were taking her to the NICU to “transition” and that I would have her back in 6 hours. They let me hold her for what is for sure to be the quickest 10 minutes of my life, and we did skin to skin and she latched on.
I spent the rest of the time in the hospital being wheeled (and finally forcing myself to walk so I wouldn't have to be reliant on anyone else) back and forth from the NICU to my room for my pain meds. The NICU only had chairs, forcing me to sit up, so my legs became so incredibly swollen that I could not even look at them. One of the nurses criticized me for taking too long to breastfeed her because they wanted a time limit on how long she could eat. They also wanted her to eat every three hours, so I set alarms and made sure to get there in time, while barely being able to walk. One time I walked in and she was crying, hard. That same nurse looked at me and said "she's hungry, she's been crying for awhile." It was heartbreaking. I am grateful to every nurse that took care of our girl and there were nurses who would call me if I wasn't there when she started crying, but that was traumatic.
Her blood sugar resolved itself, and we were finally told that she would be dismissed. We were ecstatic. They wheeled her down to our room, but said they had to test her breathing rate before they could release her. It was too fast. We were crushed and they literally rolled her right back to the NICU. All around our room were signs saying how important it is to "room-in". How important skin-skin is. I wanted to rip them all down. No one could tell me why she was really in the NICU and they wouldn't let us have her. Nurses and doctors continued to be stumped and she was only being monitored. There was no treatment and it was finally decided that the Rapid Breathing (TTN) was due to a csection and we could go home as soon as she stopped. So on night four, when they discharged me, we bought a room-in hospital room so we could still be there and I could continue breastfeeding around the clock. They ensured us that all of her issues were just from having a csection. Our pediatrician also ran a few blood tests and she had slight neutropenia but they didn’t know why.
During this 6 day NICU stay, they also did 3 hearing screens. Every time she failed her right ear. We were assured it was likely just fluid. On day 6, we were finally discharged, assured something must have gone wrong with my placenta at the end of the pregnancy, but she was okay, and we needed to follow up with our pediatrician in two days. My husband and I both cried from relief when we were finally heading home.At our follow-up appointment, our doctor briefly mentioned the possibility of CMV. He didn’t tell us much about it but said it’s so rare, only had seen it once, but that it does cause low birth weight and hearing loss so he would go ahead and test for it and referred us to an ENT.
My first lesson on being Evan’s best advocate was when the ENT told us it would be a few weeks before we could get in. I didn’t take no for an answer and we got in the next day. We started with another hearing screen and again she failed her right ear and her exam showed absolutely no fluid. He also told us that he wanted to do a separate test for CMV but said it was only a 10% chance that she would be positive. We had to wait in the waiting room at the outpatient lab at Texas Children's Hospital for over an hour with our 1.5 week old baby girl. This is when I started to really read about cCMV. As I read about women who are at highest risk, and about the signs, and about the worst case outcomes, I just sat there, holding our tiny newborn girl, reading, and tears streaming down my face in front of the whole waiting room. They wouldn’t stop and a stranger brought me a Kleenex. I’ll never forget that moment. I just kept telling my husband, we have to pray it’s not CMV. It can’t be CMV. That was a Friday, and the following Monday I got the call. She was positive for CMV. I could barely talk to the nurse on the phone in order to get the information for the infectious disease doctor I would need to call. When I hung up, I just started screaming that it wasn’t fair. My Mom called my husband to come home.
Since that moment our lives have been engulfed in learning about cCMV. There was no time to recover from birth or do all of the things I pictured that would be different this time around, compared to my first. I don't really let myself think about my pregnancy because of the trauma from it all. I often can't look at pictures of my pregnancy or even my maternity clothes.
We were immediatly seen by one of the top CMV doctors in the world, who miraculously is at Texas Children's Hospital, less than 10 minutes from our house. We immediately had more blood tests, urine tests, and a brain ultrasound. She was started on a very strong antiviral with black box warnings. I was in shock. There's not really another way to describe it. I still am and I often still feel like this isn't really my reality. But it is. And it is for so many other moms out there, plagued by this common, yet silent virus. The resounding message I hear from all of the cCMV families out there is that they had no idea. Why didn't anyone tell us? Also, it seems that there is such little knowledge about it, even amongst doctors and obgyns. Even certain infections disease doctors aren't well versed in it. I know this will change one day and there are amazing moms and dads, doctors, and obgyns out there fighting for change, awareness, screening, and a vaccination. People say we are lucky that we found out at 2 weeks old that she had CMV. Some moms don’t find out for years that congenital CMV is the cause of their child’s hearing loss or other delays, missing their opportunity to take the antiviral. (If it’s caught in utero, there are also some treatment options.) But looking back, CMV is the leading cause of non-genetic Hearing loss. Small birth weight, neutropenia, and petechia rash are all symptoms of CMV. She should have been tested in the & NICU. But we will help fight for these changes and that’s all we can do about it now.
Our baby girl, Evan, is now 5 months old and these first months have been filled with more hospitals and doctor visits, and more heel pricks and intravenous blood draws than I can count. She is still on her medication, fighting to rid her body of the virus, but she almost has. She is still small but so strong. She’s beautiful, happy, alert, and so so sweet. She has a profound hearing loss in one ear, and is a candidate to receive a cochlear implant when she turns a year. She’s in speech therapy and receives early childhood intervention for her hearing and to make sure she continues reaching her developmental and physical milestones. We will be incredibly blessed if this is the extent of the effects from CMV. But as time goes on, I have learned that I can handle anything and nothing will change the love I have for her. Her daddy and I will continuously fight for her and, along with her sweet older brother, love her fiercely.
Please visit nationalcmv.org to learn more about CMV.
You can follow Hannah on Instagram @hannahenglish