Meet the Founders: Farah Armstrong
When I think back to the moment I first heard about Cytomegalovirus, I still get chills down my spine. It was January 31, 2014 and my beautiful baby girl had only been born for one hour. I was still recovering from the delivery when the neonatologist came into the room to report the worst news I have received in my lifetime. I remember that I was so out of it and my delivery nurse nudged me and said “Farah, you need to pay attention to what she is saying.” I was distracted. My legs were still numb from the epidural and I was looking across the room at my husband who was holding our precious daughter, Madeline Leigh. The memory is still so blurry. I heard the doctor say that she believed Maddie had been born with a congenital virus and that they would be running many tests to confirm. The neonatologist felt fairly certain that it was congenital CMV (Cytomegalovirus) and she stated that our baby could be blind, deaf, and possibly have severe brain damage. I honestly don’t remember much after that. I couldn’t breath. I was hysterical and thinking that there must be some mistake. This couldn’t possibly be happening to us!
I had experienced an uneventful pregnancy without any complications or any indications of a problem. My ultrasounds all revealed a healthy baby with proper development. I refused to believe any of the predicted diagnoses at that point. I honestly didn’t have the strength to think one minute into the future. It was that exact moment when I realized that I couldn’t get through this alone. I knew that I needed God to carry me through each moment. And He did. Each day was a roller coaster ride but by the grace of God we continued to get through each day.
When Maddie was five days old the blood test results came back confirming that she had congenital CMV. We were ready and determined at that point not to let anything stand in our way of fighting this awful virus, for our daughter’s sake. Maddie continued to have platelet transfusions and multiple tests each day. She was transferred to Memorial Hermann Memorial City’s NICU for an MRI. We were hanging on with extreme hope that the MRI would reveal that her brain had developed without too much damage. Unfortunately, that was not the case. In the midst of all of my blurry memories, one image is crystal clear. My husband took the call from the neurologist while I sat in a rocker next to him watching my precious baby sleep. I can still hear the sound of the cell phone hitting the floor in the NICU as my husband collapsed in agony. Our worst fear had come true. Maddie’s cerebellum, the part of the brain that plays an important role in motor control, had only formed 10 percent. The neurologist believed that she would never have coordinated movement. We were speechless. We weren’t sure what to do or how to go on. We did the only thing that we knew how. We prayed for God to reveal his plan for Maddie to us. And He did.
A few days later, the neonatologist informed us that Maddie was terminal. Her liver was shutting down and she was not sure if Maddie would live a few more days, weeks, or months. We made the tough decision to bring our daughter home on hospice care. I still remember how nervous we were as we drove Maddie home in rush hour traffic on I-10, while she was under the care of a portable oxygen tank and feeding tube. Yet in the midst of the hardest thing I have ever experienced, I felt a sense of peace. If there was any justice in this entire ordeal, at least Maddie could spend time at home with her parents, grandparents and big sister, Sophie.
We were blessed with two more days to love Maddie during her life here on earth.
Maddie passed away on February 12, 2014. She was only 12 days old.
A few weeks after Maddie passed away her mission was born. Maddie’s Mission
, a nonprofit organization in Katy, Texas was formed to educate families about the harmful effects of CMV during pregnancy. We spent the next 18 months conducting grassroots CMV awareness events throughout the Houston area, distributing pamphlets to doctor’s offices, daycares and mom’s groups, and planning fundraisers to support CMV research and education. We also worked with a team of Texas CMV moms and CMV expert, Dr. Gail Demmler-Harrison to pass a CMV education law in Texas, which became effective on September 1, 2015.
I am fully committed to increasing awareness of congenital CMV because I do not want other families to suffer the pain that my family has experienced. I lost one of the most precious gifts of my lifetime, my sweet baby girl, to this preventable virus. However, I am honored to spend my life fulfilling my daughter’s purpose and to have Maddie’s Mission merge into the National CMV Foundation. I look forward to the opportunity to serve as part of this amazing organization.
My family is very blessed to share that our story does not end in tragedy. On October 12, 2015 we welcomed a healthy baby boy named William Patrick into our family. God’s timing was truly perfect as it gave us time to heal and time to pursue Maddie’s purpose in this world.
Maddie will forever hold a special place in my heart. I think about her constantly and know that she is smiling down on our family from heaven. I will rejoice in seeing her again one day in the future.
Category: Community, "Parent Perspective"