On July 28th 2011, I found out I was pregnant with our second child. I was very excited and a little surprised at how much quicker it happened the second time around. I called my husband at work with the happy news, and then proceeded to call my parents, my sister, and a few close friends because 12 weeks is just too long to wait to share such exciting news.
I started making plans for our "big official 12 week reveal". I went on etsy and immediately ordered a "promoted to big sister" shirt for Shannon (then 15 months old) to wear in some pictures I could send to family and post on facebook. I went to the doctor on August 20th for an early ultrasound to confirm our due date. While I was there I told her that I was having mild flu-like symptoms (chills, aches, extreme exhaustion) and I wasn't sure if they were due to the pregnancy or if I had some sort of illness. My internet research had led me to believe I had listeria, since August was a weird time to get the upper respiratory flu. She assured me it was not listeria, did the ultrasound and sent me home with instructions to rest and drink fluids to treat my flu. A few weeks later, after having the stomach flu (such a lucky pregnancy for me!) I called my doctor and asked her if she would do a quick ultrasound to make sure baby was ok. She met me at the office and the ultrasound was fine (10 weeks, 3days) but she said the flu I had in August had her a little worried so she wanted to run some extra blood tests. I went to the lab, gave some blood, and went home, happy that the ultrasound still showed our little peanut doing well.
On September 24th (11 weeks 4 days) I shared the pictures of Shannon in her big sister shirt with everyone. I knew it was a few days earlier than the 12 week "safe zone", but at that point I was pretty confident that things were going well. On the 28th, just 4 days after we shared our news, my OB called me about my blood work. I had completely put the flu and blood tests behind me, thinking nothing would come of them and that I had been paranoid to keep asking my doctor questions about my symptoms. Apparently I was not paranoid.
My doctor told me that my test had come back positive for CMV (Cytomegalovirus). I had never heard of this virus before so I asked her to explain what exactly that meant. She said it put our baby at risk for a plethora of birth defects, including deafness, blindness, cerebral palsy, learning disorders, paralysis, and death or miscarriage. I was shocked and devastated. I called my husband in tears. I cried to my mom and mother-in-law over the phone. I took a day to digest the news, and then I delved into internet research. I was reading journal articles, info from the CDC and NIH, anything I could find so that when we went to the specialist, we would be able to ask intelligent questions and get the most out of our consult.
I found a promising study, run by Dr. Adler, a CMV expert at Virginia Commonwealth University, where mothers were treated with Intravenous Immunoglobin G during pregnancy and this seemed to drastically lower the chances of severe problems due to the CMV infection. I printed the study and brought it with me to the specialist. She told us the study was done in Italy, it wasn't a controlled study, the treatment wasn't available in the US. She said a 1st trimester infection was less likely to infect the baby, but if the baby was infected, the odds were great that the baby would be severely affected. She said we would need to monitor for signs of the virus on ultrasound and wait until 21 weeks for an amniocentesis to see if the baby had the virus. After the amnio, she said we would discuss our "options" which meant continue the pregnancy or terminate. She said the virus was unpredictable so even if we saw no symptoms on early ultrasounds, signs could show up on ultrasound after the legal termination date. It was the most devastating doctor's appointment we have ever had. We left in tears. This was the low point of the pregnancy.
I went home and continued researching, convinced I had read somewhere that the treatment I had read about was available. I stumbled across a message board post about Dr. Adler and how he was available by email. The next morning, I looked him up and emailed him about our situation. He emailed me back within 45 minutes with a recommendation to see a doctor in the area he had once worked with. He said I could definitely get the treatments (known as cytogam treatments) and he would talk any doctor through how to treat me. We finally had some hope.
I called the new practice and my husband and I made the hour long drive up to Evanston to consult with the new doctor. The new doctor was patient and very knowledgeable. She did say we were at a higher risk of the baby being severely affected if I had passed on the infection, but her numbers were a little better. She said the hospital did offer the cytogam treatment in a study, but my blood levels were just outside the cutoff. She also said I could look into if my insurance would cover the treatment, but that the hospital typically didn't do the treatment until after a positive amnio, and that couldn't be done until 21 weeks. I felt so helpless. We knew I had the virus, but the norm was to make me wait 7 more weeks before doing the only known treatment to help prevent the baby from being infected!
A few days later, the doctor called back and said that after the MFM group discussed my case and consulted with Dr. Adler, they decided to let me get a cytogam treatment. On October 28th, at 16 weeks pregnant, I had my first infusion. We weren't sure if the baby was infected, but the treatment would not hurt her. A few days before the treatment, we started doing our monthly ultrasounds to look for the signs that the baby was infected (calcifications on the brain, microcephaly, echogenic bowel) and we found out we were most likely having a girl.
We did the amniocentesis in November and since all of our ultrasounds had been normal, the doctor was very optimistic that it would come back negative. We did the test on a Monday and after waiting all week, I finally go the call that Friday. It was positive. It was a bit of a setback. We were told that as the pregnancy progressed without any signs on the ultrasound, severe issues were less likely. Due to the positive amnio, we did do one more cytogam infusion in December, just to help increase our daughter's chances of not being severely affected.
We continued with monthly ultrasounds and non-stress tests. Everything about my pregnancy was pretty normal except for that stupid flu in August. We met with a neonatologist to discuss the tests they would do when Abigail was born. A CT scan, a blood test for platelet count and liver enzyme function, an eye test a hearing test, and a test to see if the virus was being shed in her urine.
My due date (April 3rd, 2012) came and went without the arrival of Abby. Finally on April 8th, I went into labor. Three hours after we got to the hospital, Abigail Elizabeth was born. She was our little Easter baby! She had no signs of any issues, so she got to spend her first hour with Mike and I before they admitted her for testing. All of her tests came back negative, except the urine. She was shedding the virus, but that can occur after they are done fighting the infection. The infectious disease doctor wanted to run a blood test to quantify how much virus was still active in her blood. The test was a PCR and he said studies have shown a viral load below 1000 typically meant very little chance of hearing loss later in life. Anything over 10,000 and they would probably recommend admitting her for an antiviral treatment. Abby's number came back zero. This time when I cried, it was tears of joy!!
We continue to monitor Abby and are constantly worried that CMV will sneak back up on us and steal away her hearing. It will be years before we know if her intelligence has been affected by this stealthy virus. Right now, we are just so thankful to have a happy and healthy baby girl in our lives.
- Shared by her mother, Faith
Posted: 1/26/2017 10:21:17 PM