CMV Parent Stories - Share your Story - Real Story of Congenital CMV
Portia’s Story"Portia Adriana joined our family on August 17, 2007, one month shy of her scheduled arrival..."
In so many ways, it was a completely normal pregnancy. But it was also a highly monitored pregnancy that was overwhelming at times.
In January of 2007, a month and a half into the pregnancy, I went to my family doctor for my annual exam and standard blood work. When the results came back, my liver enzymes were very high. Two more rounds of blood work, and the reason for the abnormal levels was determined - I had a primary Cytomegalovirus infection. I had no idea what this meant, and the doctor didn’t really explain the significance. That night, I got on the Internet and felt true fear for the baby who would become Portia. This was my third pregnancy, but I never heard of CMV.
When the results of my blood work were forwarded to my OB, I was immediately transferred to a fetal-maternal specialist. My husband and I met with him for an initial consult and learned more about this silent and ugly virus. The next step was to wait until I was 16 weeks along and have amniocentesis to determine if the virus had passed through the placenta into the amniotic fluid. In the meantime, I did more online research and found Dr. Stuart Adler.
Four weeks later I had the results of the amniocentesis in hand. I learned that the baby I was carrying would be a beautiful little girl, and she was positive for CMV. I was crushed. I asked my specialist about the research Dr. Adler had done on the immunoglobulin infusions, but he was unfamiliar with it. My specialist then mentioned abortion as an option. I will admit that my husband and I considered it, and even had a few bitter arguments over it. We were scared about the unknown, worried that our other children would suffer, and we didn’t want to bring into this world a child who may never experience life the way we thought it was designed to be experienced. In the end, we realized this was our child, the child who had been chosen for us, and one who we would be blessed to have.
I contacted Dr. Adler and asked about the immunoglobulin infusions and if I would be a good candidate. He then contacted my specialist and at 20 weeks, I spent five hours getting my first infusion. Four weeks later, I had my second. I truly believe these two infusions were a very important factor in our experience.
The pregnancy continued rather uneventfully. I had monthly ultrasounds throughout and, with the exception of Portia’s head measuring slightly small, everything looked normal so I was transferred back to the care of my general OB one month before Portia’s due date. During that first appointment, it was determined that Portia was no longer moving well and her growth seemed to have slowed. I was scheduled to be induced.
Portia was four pounds, 12 ounces at birth. She was pink, she cried and she was beautiful. The numerous pediatric doctors waiting in the room did their initial evaluation. Portia had an enlarged liver and spleen. I was allowed to hold her for only a few minutes before they took her to the neonatal unit. My husband and I were devastated. All the pregnancy ultrasounds had appeared completely normal. We knew she would be CMV positive, but we thought she would fall into the 90 percent category of children who would be born without symptoms.
When we were allowed to see her, she was hooked up to numerous monitors inside an incubator. In addition to the enlarged liver and spleen, we would learn that she had petechiae, she would require a transfusion because her platelet levels were low, she had microcephaly, and she had abnormal brain development, calcifications and cysts. She did pass both her hearing and vision tests, which we were thrilled about.
We met with a pediatric infectious disease specialist who provided information about Ganciclovir. We elected to try the six week treatment. Portia went in for a minor surgery to have a Broviac line placed into a vein in her thigh that led up and ended near her heart. She started the treatments in the hospital. After the first few, we took her home, where I was taught how to clean the area and administer the drug through the Broviac twice a day for the remainder of the six weeks.
Today, at 18 months, Portia is my true miracle. Despite everything she has working against her, she is exceeding everyone’s expectations. She is monitored by numerous doctors and specialists, but only displays mild developmental delays, she can even sign nearly 60 words! (Something we are teaching her in case she loses hearing.) I realize that her future is still rather unknown, but we are optimistic that she will continue to do well.
- Submitted by her mother, Summer
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