Perfect: A Journey of CMV, Love, and Resiliency
As a mom, I felt I was a pro so concern of complications about my second pregnancy was at the back of my mind. With my first, I lifted 50# syrup boxes at work, swept, and mopped, and worked on my feet for over 12 hours a day most days. I wouldn't be one of those women who complained or came up with an excuse about my inability to perform because of the impending birth of my second child.
I attended all required OB appointments, had an ultrasound at 19 weeks gestation, and kept myself healthy through diet. I wasn't sick during my pregnancy and neither was my daughter, who at the time was 5 and still in daycare as she missed the cutoff for kindergarten.
During a routine check-up at 37 weeks, the OB doctor measured me. He was concerned with my size, as I was only measuring 34 weeks. Mind you, they measured me at a normal rate until this appointment. He left the room and immediately scheduled me for a stress test. I'm still not sure what the meaning was behind this. However, he came back in and informed me that an amniocentesis would determine whether the baby could survive outside the womb without a lot of help for breathing. He passed the amniocentesis test with flying colors and I was to be scheduled for a c-section that day. I was feeling calm, even though realistically, I was not ready for him to come home. I thought I had three more weeks to plan!
When Brandon was born, he was small and fragile, but perfect. Weighing only 4 pounds, 13 ounces, he had great Apgar scores, and he didn't seem to concern the doctors at all. I was told his head was small, but otherwise, he was healthy. It wasn't until days later, after his circumcision took place, that his problems started. The doctors believed the stress of the circumcision caused seizure-like activity, but since they didn't know for sure, they were going to order several tests and recommended that he follow-up with a pediatrician.
For weeks, Brandon was in the NICU of the local hospital. I had started back at work sure that he would be fine and be able to come home soon. They found no results, other than the MRI report that there were calcifications on his brain, and his lower brain was smooth and incompletely formed.
Ultimately a urine sample tested at the Mayo Clinic in Rochester, Minnesota confirmed a CMV infection during my pregnancy, which affected his development in utero. I raced to my computer as soon as I had the opportunity and began searching for all the terms the pediatrician had told me -- lissencephaly, microcephaly, CMV, brain damage -- I was relentless at finding out everything I could about this virus that changed both our lives forever.
Through our CMV journey, I have learned that setting that boundary of what Brandon can't do was only going to make our lives harder. I wouldn't give up on what it meant for him to be here and what his message is for others. We were determined to make the best of what gifts each of us were given and giving back by writing a book was one of them. Brandon moved to a group home in December 2019 and currently lives with 5 other kiddos who each have diagnoses of their own.
I wrote the book Perfect: A Journey of CMV, Love, and Resiliency, not only to celebrate what Brandon has done for me and others but to provide hope for those that are newly diagnosed and their caretakers and parents. I hope that this book, read aloud to your kiddo, will make you feel confident and empowered as their advocate and cheerleader.
-- Patty Cutshall
Patty's book is available for purchase on Amazon.
Category: Advocacy, Awareness, Community, "Parent Perspective"