We were so excited when we found out that we were pregnant with our third child. At my regular OB check-up at 18 weeks pregnant, I decided to go ahead and do the 2nd trimester blood screening test. They took one vial of blood and said that they would call me with the results and I didn't think much more about it. The next week (week 19) they called to let me know that my screens came back at an "increased risk" for Down Syndrome and referred me to a genetic screening specialist. The specialist did a Level II Sonogram and immediately found several abnormalities: fluid in the abdomen, enlarged heart, bright intestines, abnormally small baby. We were shocked and had an amniocenteses that same day in hopes that we could find out what the issue was and be prepared to do everything possible to help our baby. We were told that it was most likely a chromosomal issue like Downs or Trisomy 18.
During this time, we also found out that our baby was a boy and decided to go ahead and give him a name. We had so many family members and friends praying for him and we just wanted everyone to know that this was our baby and we would love him and want him, no matter what the outcome. We choose the name Silas Asher, which means “third blessing”....Silas was our third child and we thought the name was perfect.
When the chromosomal tests came back negative, the doctor decided to test for viral issues. That is when we found out that Silas was diagnosed with congenital CMV. We knew nothing about this virus and spent the next week researching like crazy. Our specialist had told us that there was nothing we could do and there were no treatment options. I found that unbelievable and continued to research and read into some promising studies with globulin treatments. With the help of the Stop CMV organization and Dr. Adler, we found an amazing facility in Houston and a CMV specialist doctor that agreed to take our case and administer the globulin treatments. We cannot say enough good things about Dr. Gail Harrison and Dr. Karen Fox and all of the staff at Texas Children’s Hospital in Houston. We knew that our baby was very sick and the infection had spread throughout his entire body, including calcifications in the brain. However, we made the decision that we would do anything we could to help him fight and these doctors were so supportive. Unfortunately, by the time we started the treatment, his little body was just too sick. Silas passed away in utero around 25 weeks. After the still birth, we chose to meet him and hold him and tell him how sorry we were. We struggled a lot with the “whys” and “what ifs” and have had to deal with the anger and sorrow that comes along with losing a child. However, we also choose to take comfort in the fact that Silas will no longer have to suffer and is in a better place and someday we will see him again.
It’s hard to explain how you can miss someone who was never even born, but we do. There is a hole in our hearts that can never be filled, and a pain that will never go away. We continue to pray that as awareness spreads, a vaccine and/or treatment will come along that stops future problems with congenital CMV. There are amazing doctors and organizations like Stop CMV that have made CMV their life’s mission. And we are continuously in awe of the struggles that CMV kids and parents face and overcome every day. Have you ever heard the saying “God gives the hardest battles to his strongest soldiers”? That’s how we feel about all of the families who have had to deal with the effects of this horrible virus.
- Shared by his mother, Sheryl
Posted: 3/10/2016 9:39:52 PM