In 2008, my husband and I found out we were expecting our second child with a due date of February 3, 2009. When we went to our 20-week ultrasound appointment the tech immediately noticed something was not right and went to get the doctor. The doctor came in and told us our baby had lots of fluid around his heart, which is common with babies who have down syndrome. We were in shock but perfectly okay with that. We quickly had to make some decisions as to where to go for further testing. In the area where I live there were 3 maternal fetal medicine physicians all between 1-2 hours away. We decided and went the next morning for further testing. The doctor we chose was adamant that our baby’s health concerns were far worse than down syndrome. The doctor was thinking more along the lines of Trisomy 13 or severe chromosome deficiencies. The doctor told us the fluid around the brain, heart, and lungs were severe and that our baby’s condition would be incompatible with life. We were devastated. The doctor pressured us to have a medical abortion. We expressed that abortion was against our beliefs and that was not an option. They performed an amniocentesis and sent it off for testing. My husband and I went to church that night and prayed for our unborn son and that God would heal him.
At our next appointment we received the results back and all chromosome testing was normal. The doctors were so confused as to what was wrong with our precious baby boy. I had more detailed ultrasounds and more counseling advising me to abort the pregnancy. It was emotionally draining. Then, the doctor consulted another physician at a larger medical university and they suggested the fluid be sent off for CMV testing. The lab had one vial of fluid saved and this was our last chance for answers.
The test came back positive for CMV -- something I had never heard of. The doctor told me that there wasn’t any treatment for CMV and the experimental treatment was very expensive and we couldn’t afford it. After such horrible experiences with our physician, we decided to transfer care to our state medical university. The day of our appointment we met with one of the best doctors ever. He spent the day with us discussing treatment options and learning about our situation. Not one time did he ever ask me to abort my baby. I found out that my insurance would have covered the experimental treatment but because I had the infection for so long my body had started making its own antibodies, and the treatment wouldn’t be beneficial. So, at this point we just had to pray and keep our hopes up.
I went to the doctor every two weeks for ultrasound and monitoring. We knew the prognosis for our baby wasn’t good, so we met with the NICU team and they wanted us to decide whether we wanted all life saving measures for the baby if he was born alive or did we just want to spend time with him for as long as possible. We left and prayed. As a mother, that is the hardest decision to make because there will always be the “what if?”. When I went for my appointment the next week, we didn’t have to make the decision. Our baby was stillborn at 32 weeks from a primary CMV infection. He weighed 2lb 12 oz and we keep his memory alive.
At the time, I wanted to see how I could educate other moms about CMV, but there wasn’t a whole lot of education out there. It has been almost 12 years since his death, I still think about him, talk about him, and share his story. I have had two more healthy children since then. All of my children know about their brother and we continue to celebrate his life.
-- Shared by his mother, Lindsay
Posted: 8/27/2020 9:08:29 AM