Gracie’s Story"I had an awful first pregnancy..."
I had preeclampsia and kidney stones (which I could not pass), so our daughter, Regan, was born at 34 weeks. She was premature but, to our relief, healthy.
When we found out we were pregnant again fourteen months later, I told my husband, Doug, there was no way this pregnancy could be worse than our first. Well, I was wrong! I felt amazing throughout my second pregnancy, so I was shocked when our 18-week anatomy scan not only showed the sex of our baby-another girl! but also showed an abnormality: An echogenic (dense looking) bowel.
This can be a marker for a number of issues (cystic fibrosis, Downs Syndrome, abnormal intestine structure or blockage, toxoplasmosis, or CMV). But the doctor assured Doug and I that it's often associated with nothing at all. We were advised to get an amniocentesis to look for genetic abnormalities and infections, and to have blood tests for toxoplasmosis and CMV. We decided to wait on the amnio because we felt the risk of miscarriage was larger than the chance we'd actually find something wrong. A week later however, our CMV screening came back both IgG (CMV immunoglobulin) and IgM (indicating a current CMV infection) positive. Because doctors do not often have the "privilege" to see symptoms of CMV during pregnancy they did not seem too worried. I was transferred to the high-risk perinatologist team at Yale New Haven Hospital. These doctors also felt that there was a good chance that the echogenic bowel was nothing and that the positive CMV findings "were probably from years back so there was nothing to worry about."
That all changed during the 24-week ultrasound. Our daughter was growth-restricted and there was absent end-diastolic umbilical flow. I was immediately admitted to the Children's Hospital at Yale New Haven to be monitored for the duration of my pregnancy. At this point, we decided that the benefits of the amnio (determining what was going on with our daughter) outweighed the risks. A few days later the results of the amnio came back positive for CMV.
The doctors told us that we could still abort our child by traveling to a state that aborts after 24 weeks. This single statement solidified the severity of the situation. We knew that no matter how our child was affected, we wanted her! In a way, we were happy to finally know what was going on, but we were also terrified: How severe will her disabilities be? Will she even make it into this world?
During my six-week stay at Yale I was given two CMV immunoglobulin IV infusions (Cytogam). This, we hoped, would help minimize the effects of the virus. At 30 weeks, our daughter began to show signs of distress. She received a 2 (out of 8) on her BPP and her end-diastolic flow had reversed indicating that it was time to deliver her.
Gracie May was delivered by c-section on March 2nd, 2009. She was 2 pounds and 13 .5 inches long. Our little miracle was finally here. On top of being severely affected by CMV, she also had to fight through prematurity. Gracie's stay in the NICU was somewhat of a blur to me. I went through the motions of taking care of my family, keeping friends and family updated, healing from my cesarean, all while trying to save my newborn baby. I blocked out all emotions during this time. I think that is what you sometimes have to do as a mom to get through times like this. One night, a few days after her birth, I was afraid to cry when the doctors told me that she may not make it through the night because I felt that any negative thought made the situation real.
During her two-and-a-half month stay in the NICU she received the whole gamut of respiratory support (from ventilation to nasal cannula.) Gracie was born with Thrombocytopenia and Anemia of Prematurity. Both of these hematology issues required multiple packed red blood cell and platelet transfusions. At birth, her liver and spleen were extremely enlarged due to the severity of the infection. It took much time for Gracie to learn to suck, swallow and breathe while eating and for her body to learn to digest food. Gracie received a 6-week course of the antiviral Ganciclovir. Although this drug caused Nutropenia, which required Neupogen, we feel this drug helped jumpstart her recovery. She fought very hard to survive during her 72 days in the NICU! Gracie's strength and will to live has gotten her to where she is today.
Currently, Gracie is 7 months old with stunning blue eyes. She has fought her way through Retinopathy, Cholestasis, Thrombocytopenia, Anemia, Neutropenia, respiratory distress and much more. Gracie is developmentally delayed due to her mixed muscle tone. But because Gracie's MRI does not indicate brain calcifications, we are hoping her delays are due to prematurity. Gracie's hearing is what has been most severely affected by CMV. She has been diagnosed with profound (the most severe) bilateral (both ears) deafness. We are currently trialing hearing aids with the expectation that she will receive cochlear implants in the near future.
We will feel truly blessed if this is the worst of the long-term CMV effects.
As for Doug, Regan, and I, we are enjoying every milestone Gracie conquers. Her smile and giggle brings light to our lives! It is now our family's mission to raise awareness and push for further research, specifically a CMV newborn screening and a vaccine. Like most mothers of symptomatic cCMV children, I do not know what the future brings for my daughter, but I am working to make it as bright as possible.
- Submitted by her mother, Casey Famigletti
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..."