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 Kniss
Perhaps no one is able to give greater insight into living with congenital CMV than the parents of those children and adults born with this disease. Click here to read their stories.
Lisa Saunders
"Sixteen years after her birth, I awoke feeling so proud of Elizabeth on her birthday. She had fought hard to stay with us in the land of the living, surviving several bouts with pneumonia, seizures and surgeries". ... more
Melissa Prosper
"For the rest of my pregnancy I got bounced around from specialist to specialist for all kinds of testing. I had MRI's and ultrasounds and with all of them came more bad news. It seemed like every doctor had no hope for him"... more
Rosemary Carter
"Two days after his birth, he failed his newborn screening in both ears. He didn't like being held because he liked to bend his back backwards a lot. He failed all hearing tests and we did an ABR"... more
Sharon Caldwell
"As a new mom I believed she was just a little slow and she would catch up (she was 3 months) but I did as the doctor wanted and that is when all the tests began"...more
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Please include details about you and your child's experience with congenital CMV. You're encouraged to include information about your pregnancy, delivery, diagnosis, prognosis and how your child is doing. Feel free to write about your thoughts and feelings as you have raised your CMV child.
Your experiences will encourage and strengthen other CMV parents and will offer the public invaluable insight about the CMV virus. These compelling stories can be the key to positive change - policymakers, the press, and other key influencers will learn more about congenital CMV and its profound impact, largely unseen around the United States and the world, until now...
Send your story to: email@stopcmv.com.
Real Story of Congenital CMV"Imagine giving birth to a baby and finding that your baby was exposed to a dangerous virus during pregnancy.
This virus, Cytomegalovirus (CMV), could have a questionable impact on your child’s development and prognosis and you have no outlook as to what your child’s life and medical situation would be. You were never informed of this virus by your OB/GYN while pregnant and were never told to take any precautionary measures to prevent exposure. You blame yourself for allowing harm to come to your unborn child and you wonder how and where you may have acquired the virus and what you could have done to prevent it. Upon learning that you likely acquired the virus from small children, even possibly your own small children, you blame yourself for not being more careful but you also slightly resent your other children for indirectly harming your newborn.
When you research the internet and search for information about CMV, words like "herpes" and "HIV" come up in many of your searches and you feel additional shame and guilt wondering what you did to harm your baby. When you read about CMV, you read in pregnancy and parenting forums that it is "rare" and "uncommon", coupled side by side with data from medical sites, putting statistics closer to 1 in 150..."