CMV Spotlight: Ellie and Anderson
Welcome to Sunshine and Shattered Dreams! I am so glad to have you. My world for the last few years has been advocating. The only story I have been sharing is mine, which is not the only one out there. This year, I have decided to use my platform to shine a light on the warriors who fight CMV and the parents who advocate alongside them.
Samantha: Please introduce yourself and your child. Tell us a little about your family: Ellie: My name is Ellie. My husband, Adam and I, have two children, Elsie (3), and Anderson (1).
Samantha: Before your child’s diagnosis, had you ever heard of CMV, how much did you know? Ellie: Nope, I had never heard of CMV specifically. Oddly enough, exactly a year before he was born I had been screened for it (negative) during my
daughter’s pregnancy due to a rash. The conversation simply mentioned that I was negative, nothing more. Samantha: How did your journey begin? What was going through your mind? Ellie: My son had symptoms on his 20 week ultrasound, specifically an echogenic bowel. I also had very high liver enzymes the very beginning of my pregnancy. We did a TORCH screening, trisomy screen, and cystic fibrosis screen. Still confusingly to me, my TORCH CMV portion came back negative on all accounts (both for active and prior infection). All tests came back negative, which gave us a sigh of relief. (Unfortunately, we know now that the CMV was a FALSE negative for whatever reason.) The only other signs for concern before birth was small head and IUGR (intrauterine growth restriction). The echogenic bowel had mostly resolved itself. Our journey for his CMV diagnosis began shortly after Anderson was born though. Following birth, he appeared healthy with no outward signs of anything wrong. That evening after his birth, he shook and shook. I kept calling nurse concerned. Finally, they took him out for a few hours to monitor him. That evening, he had failed two hearing tests as well. The next morning, our pediatrician came in mentioning concerns for his thyroid levels. We were sent on to OKC by ambulance the day following his birth. I could not even ride with him. Once we all arrived at the hospital, the travel nurses that were with him in the ambulance came to talk to Adam and I and mentioned how they had shot him with 3 doses of phenobarbital (a seizure med.) because he was having seizures (an EEG later thankfully determined they were not).
Our whole world completely stopped at that moment. We were in shock. They ran lots of tests the next few days to determine what was causing his problems. On Day 4 of his life, that Sunday, we overheard the doctors say that he had tested positive for CMV. That’s when we started our search of “what does this mean for our baby boy?” The range of results vary significantly but without doubt our baby showed symptoms. We were scared for our baby’s future. Samantha: Tell me a little more about Anderson's conditions associated with CMV. For his age, how is he doing developmentally? Ellie: Anderson has sensorineural hearing loss in his left ear, he just received a Cochlear implant in that ear, he is just slightly delayed in physical and speech skills and has very mild nystagmus.
Samantha: What has been the hardest moment for you as a mother? Ellie: The hardest moment for me as a mother was the anger, anxiety, and helplessness I felt the first 3 months after Anderson was born.
Samantha: What is your greatest hope for Anderson's life? Ellie: I hope my son has a happy, independent life where he can thrive in every situation and environment.
Samantha: This journey through special needs parenting can feel extremely lonely, even when we know we aren’t alone. There is often no physical closeness to a mother going through something similar. Where do you turn to fill your cup? How do you take care of yourself? Ellie: I enjoy time with my kids playing often, baking with my daughter and taking a few moments for myself every so often. I also network frequently with other mothers who have been given similar diagnoses. Samantha: A life filled with hardness can teach us some amazing lessons on
love, kindness, empathy, and joy. What are some lessons that you have learned through your journey that might be helpful to a mother who has just begun? Ellie: Always remember, there is always someone who wants to support you. Let them. Samantha: What is a quote, scripture, prayer, or piece of mediation that you would like to leave us with today? Ellie: Celebrate every milestone like you never expected to meet it.
Thank you, Ellie, for your story. Anderson is a beautiful little boy! I love where you say to "let them" help and support. We get this complex that we need to do it all by ourselves and that we can shoulder the world. This isn't true and during these really hard times in our lives, we need to accept the love and support from those around us.
Thank you for sharing your light.