Maddie’s Story {Cytomegalovirus :: The Silent Virus that Women Need to Know About}

Maddie's CMV Story (3)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 a textbook perfect 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.

Maddie's CMV Story (4)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.

Maddie's CMV Story (2)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.

This leads me to my favorite and happiest memory of those days. When we finally got Maddie inside our home, Sophie ran up to her to give her a big kiss. Sophie yelled out, “Maddie, you have a pash! I have a pash too!” This was Sophie’s reference to her prized possession, her pacifier. Sophie reacted in a way that any older sibling would. She was so proud of her baby sister and wanted to look at her and hug her constantly. It was the best moments we had experienced over the previous ten days. We were blessed with just a short time longer to love Maddie during her life here on earth.

Maddie passed away after 2 days at home with her family. She was only 12 days old.

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.

A few weeks after Maddie passed away, her mission was born. Maddie’s Mission is a local grassroots organization that strives to raise awareness about the potentially harmful effects of CMV during pregnancy and to educate families about prevention measures. We have developed educational materials that have been reviewed and approved by Dr. Demmler-Harrison and electronic copies are available through our website. We conduct CMV awareness events throughout Houston and Katy, distribute pamphlets to doctor’s offices, daycares, and mom’s groups, and plan fundraisers to support CMV research and education. We are hosting our first annual 5k & 10k run, “Save A Baby Today 5k”, on March 7, 2015. We hope that you will join us to run for a good cause and to help raise funds for much needed CMV research!

Please feel free to contact us at any time for questions or support. Our contact details are listed on our website. We truly hope that our efforts through Maddie’s Mission will help other families avoid the pain that congenital CMV has caused us.

Maddie's CMV Story (5)

In honor of National Congenital Cytomegalovirus Awareness Month, we are dedicated to spreading awareness and doing our part to Stop CMV.  To read more real life stories of how CMV is affecting moms across Houston, please click here.  To read tips on preventing CMV for you and the ones you love, click here.  Then, we urge you to share this series and help us to spread the word about this preventable disease too!

Maddie's CMV Story - Farah's BioAbout Farah A.

Farah is the Founder and President of Maddie’s Mission, a grass roots organization in Katy.  She graduated from The University of Texas at Austin and has 10 years of working experience as a mechanical engineer for BP in Houston and FMC Technologies in Singapore. Farah lives in Katy with her loving husband Patrick and two year old daughter Sophie Michelle. Farah’s passion for CMV Awareness is in loving memory of her daughter Madeline Leigh who was only able to spend 12 short days on this earth due to congenital CMV.  You can keep up with Maddie’s Mission on their website or through their Facebook page.


  1. Farah – so proud of you for sharing your story and for all that Maddie’s Mission has accomplished in less than 5 months!!! It is such a beautiful legacy for Maddie – she is leaving such a mark on this world despite only being here in earthly form for 12 days. Love y’all!!


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