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Cytomegalovirus – The story of Theo

Cytomegalovirus – The story of Theo

Little did I know on October 8, 2021 my life would change forever. I got a call from my doctor saying I needed to admit myself to labor a delivery because I have tested positive for Toxoplasmosis- a parasitic disease women typically get from cats.

I knew this could be devastating for the baby. I was 16 weeks along, so I was finally starting to feel good and the morning sickness had finally disappeared. Fearfully, my husband and I went to the hospital and they admitted me for the weekend. We had multiple conversations with my OBGYN, Infectious Disease doctors and MFM doctors throughout the weekend.

On Monday I was finally able to get in for an ultrasound to see exactly what was happening with our baby. The red flags we were looking for were not there and for that I was grateful! The only thing they saw on the ultrasound was an echogenic bowel (bright bowel). Basically, the bowel area looked bright on the ultrasound. They said it could be one of 3 things; a form of Cystic Fibrosis, the baby swallowed some blood, or a CMV (cytomegalovirus) infection. At the time they were not concerned with further testing and scheduled me for a follow up appointment.

On October 20th, I had an appointment with a Genetic Counselor who went over everything with me. I also had another ultrasound and found out we were having a boy! My husband was so excited! The GC and I agreed that Cystic Fibrosis was probably not the cause since neither of us are carriers. She went over various outcomes for our baby if he was infected with CMV.

The infection could range from not severe to very severe. Basically, deafness is the least severe outcome for the infection. My husband and I agreed, we could handle that. We would learn Sign Language for our baby and provide supports (cochlear implants, hearing aids, sign classes, etc.) so our son could thrive. On the severe end, he could have Microcephaly, Cerebral Palsy, severe seizures, and low muscle tone.

So, I decided to get blood work done to see if I have CMV. 6 days later the results came back. I did have CMV, and 2 weeks later, I found out it was a recent infection. I was devastated as this most likely was going to end in a severe outcome.

On October 29th, I had my 20-week anatomy scan. I immediately saw something was wrong. I was 19 weeks pregnant and started feeling little flutters. However, as soon as I laid eyes on the screen I saw something was wrong. I had very low amniotic fluid and my placenta had grown and was larger than it should be. The bowels were brighter than they have been and there was some fluid in the abdomen. Of course, our little man was stubborn, and we couldn’t get a clear view of his brain, which is what we needed.

Because of all the red flags, we decided to get an amniocentesis done. I was terrified, I couldn’t stop crying. I told them I wanted to test everything they possibly could, so I could know everything about our baby. The next 2 weeks were the longest 2 weeks of my life. I got a call on November 11th that our sweet perfect baby has in fact been infected with this virus. They wanted me to get in for another ultrasound because in Ohio, legally we could end a pregnancy up to 22 weeks’ gestation and at this point I was 21 weeks pregnant.

So, on November 12th I had another ultrasound. Everything looked so much better than it did on the 29th. After much discussion with our doctor and the positive scan, we decided to continue the pregnancy. During the past month I learned that if we decided to end the pregnancy we would have to do a surgical D&E procedure. I would not get the option to hold my baby, to take pictures of him and to spend time with him. This was something that I needed to have happen if we chose to go down this path. It gave me a lot of anxiety not even being given that option.

We decided at this ultrasound to get an MRI done to check his brain for any abnormalities. The unfortunate thing was they don’t do Fetal MRI’s unless they are 25-30 weeks along. So, I scheduled the MRI for December 20th, at 26 weeks’ gestation.

I had another growth scan on November 24th and this scan by far was the best scan I have ever had. Everything looked great and other than the bright bowel, our baby looked healthy. I could finally relax and enjoy the pregnancy. I could finally start planning my baby shower and getting excited about bringing home our sweet little boy. I still had some anxiety but overall, I felt positive about everything. We celebrated Thanksgiving with my family, my husband’s family and our friends over that weekend. We were so happy.

On December 20th I had an MRI at 7:00am and I was told I would get the results sometime in the next few days. I felt sick that day and very anxious throughout the day but overall, I felt that they were not going to find anything wrong. At 4:00pm that same day I get a notification that my test results are ready to be viewed. I look at the results and I was broken. Our son had malformations all throughout his brain. Bilateral polymicrogyria, meaning many small folds, was found in the frontal lobes of the brain. He also had mild cerebellar hypoplasia. There were small cystic areas and T2 hyperintensity of periventricular white matter. We were heartbroken and devastated.

We had a phone conversation with our genetic counselor and with a Neurologist. They told us with these results, not only would our son be deaf, but he would have severe seizures, he would have low to no muscle tone which would mean difficulty swallowing, walking and doing anything with his motor skills. The Neurologist also added that he has seen brains like his before in children with severe microcephaly and severe cerebral palsy and the chances of him surviving birth were very low.

Our deeply wanted baby would not get a chance to live like a boy should. His quality of life would not be a life that anyone should have to live. We made the unbelievably difficult decision to end our pregnancy. Because I was past the 22 weeks’ gestation I had to go out of state. I called many clinics and decided to go to a clinic in the DC area. Because of how far along I was I would be doing an L&D termination. I would get to hold my baby boy and be with him for as long as I wanted and would get the closure I would need to not have immense amount of guilt afterwards. For that I was so grateful for.

On January 10, 2022 we made the drive to DC and spent our last day as a family of 3 at the National Zoo. I cried and held my tummy all day and rocked my baby to sleep while walking around the zoo. I made sure my baby knew how much I loved him all day. On January 11th we went to the clinic. I was met with the most caring and loving souls. My bereavement doula was absolutely amazing, and she made sure I felt heard. I met my doctor and midwife and felt a great sense of compassion and love. They knew how difficult this decision was for us and they made sure we knew that this decision was made out of so much love for our baby boy.

We had a final ultrasound and I asked the doctor to check some areas for me. He saw immediately how sick our baby was, telling us that he shouldn’t be able to see certain areas of his brain. At the clinic, each room was named after a flower. The operation room we were in was called the sunflower room. Both my husband and I took that as a sign from God that we were making the right decision. Sunflowers were the main flowers for our wedding.

That afternoon, on January 11th, I said goodbye to my hopes and dreams for our first born. I said goodbye to the kicks and punches I was constantly feeling. I was… I am heartbroken that my first experience with pregnancy is the loss of my son. On January 13th at 12:02pm I delivered my baby boy, Theo, sleeping. He was a perfect 2 pounds 13 ounces, 16 ½ inches long born at 29 weeks.

During the next few weeks I would experience intense amounts of grief, guilt, anger, sadness… I interacted with people who wanted to learn more about Theo. They asked me about him, asked to see pictures, allowed me to tell his story. Those people will forever hold a special place in my heart because they know how deeply wanted our baby was. I absolutely love talking about my baby boy to everyone who is willing to listen. Being able to write and tell my story about my Theo, has made my grief easier to go through.

What keeps me going is knowing that Theo was never touched by fear, never cold, never hungry, never alone, and he always knew what love was and felt like. I will forever have a piece of my heart in heaven. Theo will always be a part of my story to motherhood. I wish he was here with me today, but he will always be a part of me and I am so proud to call him my son! I am living my life so that Theo would be proud to call me his mommy. I love you so much my sweet angel!

In 2022, having struggled for a few years with infertility and an early miscarriage, my husband and I made the heartbreaking decision to end a very wanted pregnancy when our son, Theodore, was diagnosed with a severe congenital cytomegalovirus infection.

I never thought I would ever have to make this heartbreaking decision.
I live at home with my husband, and our cat Maggie. We hope our son will bless us with a younger sibling in the future.

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