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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 me 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 symptomatic CMV during pregnancy they did not seem too worried. I was transferred to the high-risk perinatologist team at Yale New Haven Children's 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 poor placental 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? It was amazing how my and Doug's thoughts were in sync with each other as we talked about the future. We agreed that we would do everything we could to bring our daughter into the world and we were both confident in our ability as a family and as parents to be able to provide our daughter with the perfect environment for her to reach her potential no matter her disabilities.
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 (dangerously low white blood cell count), 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 20 months old with stunning blue eyes. She has fought her way through Retinopathy, Cholestasis, Thrombocytopenia, Anemia, Neutropenia, respiratory distress, multiple surgeries and much more. Gracie is developmentally delayed due to her low muscle tone and medically fragile first year of life. She is currently sitting unassisted and is making strides toward crawling. We are blessed that all of Gracie's brain scans (MRIs and CAT scans) have all been normal, indicating no calcifications or structural abnormalities. Gracie's hearing and pulmonary health is what has been most severely affected by CMV. She has been diagnosed with profound bilateral hearing loss and received her 1st cochlear implant at 14 months old. She is scheduled to have her right ear implanted in December of this year. Her speech therapist tells us she is on pace with a typical implanted baby and we think she is already starting to say Mama. Gracie has been admitted to the hospital more times than we would like to remember due to her sick lungs. We have oxygen at home for pulmonary flair ups, a nebulizer, an airway clearance vest and more. With our respiratory and GI equipment, our house looks like a cross between a pharmacy and a hospital room. Most recently, Gracie has been diagnosed as Failure to Thrive and had a g-tube placement at 18 months old. Since surgery, she has gained a considerable amount of weight and her motor skills and interaction with toys and people has improved dramatically proving that she was not receiving enough nutrition before the surgery.
Although we will feel truly blessed if this is the worst of the long-term CMV effects, we know that there is likely to be more in Gracie's medical future.
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. 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.
- Shared by her mother, Casey