KATY, TEXAS (March 20, 2014)

More children are adversely affected by congenital CMV disease than by several better-known childhood diseases or syndromes such as Down Syndrome, Fetal Alcohol Syndrome, Spina Bifida, and Pediatric HIV/AIDS.

Cytomegalovirus (CMV) is a common virus that can infect almost anyone. Some 50 to 80 percent of 40 year olds have the virus, but never know because it rarely causes symptoms. However, if you are pregnant, CMV should be a serious cause for concern for you and your unborn baby.

When Farah and Patrick Armstrong of Katy, Texas, found out they were pregnant, they and their 2-year-old daughter, Sophie, were ecstatic about adding to their family.

Farah had a textbook pregnancy with normal ultrasounds and routine doctor visits. Due on Valentine’s Day, she saw her Obstetrician Selina Lin, MD at Memorial Hermann Katy Hospital on January 30. During the visit, Dr. Lin could not get a good image of the baby's head, but thought the baby was small and decided to deliver early.

Not concerned, Farah went home, arranged for family members to care for Sophie, and packed a few things for the hospital stay.

The next day, the delivery at Memorial Hermann Katy went smoothly. Madeline Leigh Armstrong arrived at 10:45 a.m. weighing just under five pounds.

“Right away, I noticed Maddie had a rash and we wondered what it was,” said Patrick. “The nurses took her away to clean her up and do some tests.”

Neonatologist Cecilia Stewart, MD examined the tiny baby and found small red pinpricks called petechiae, caused by a very low blood platelet count, plus a blue rash which indicated Maddie’s bone marrow was not properly producing blood cells. Dr. Stewart immediately ordered a panel of tests.

“Given Maddie's skin rash, low birth weight, and inflamed liver, I knew it wasn’t good and she probably had a congenital cytomegalovirus infection,” said Dr. Stewart. “This was one of the times I wished I was wrong.”

Each year in the United States, about 40,000 children are born with congenital CMV infection, causing an estimated 400 deaths and leaving approximately 8,000 children with permanent disabilities such as hearing or vision loss, or mental disability. More children are adversely affected by congenital CMV disease than by several better-known childhood diseases or syndromes such as Down Syndrome, Fetal Alcohol Syndrome, Spina Bifida, and Pediatric HIV/AIDS.

Maddie was transferred to the Neonatal Intensive Care Unit at Memorial Hermann Memorial City Medical Center for more tests. The devastating results confirmed she did have the virus and the damage to her brain was significant and widespread.

“We had never heard of CMV before and our heads were spinning,” said Farah. “We cried, cried, and cried some more. How could this happen? How did we not know?”

Dr. Stewart thought Maddie had contracted the virus while she was still in the womb. CMV spreads through body fluids, such as blood, saliva, urine, and breast milk. If you are pregnant and develop an active infection, you can pass the virus to your baby.

Most healthy children and adults infected with CMV have no symptoms and may not even know they have been infected. Others may develop a mild illness when they get infected and have symptoms like fever, sore throat, fatigue, and swollen glands.

“Everything was perfectly normal at the 20-week ultrasound, so we know the disease took hold sometime after that, and was extremely aggressive,” said Patrick. “The virus is pretty evil; and unfortunately, not a lot has been done about education, awareness, prevention, or treatment.”

On February 7, Dr. Stewart told the Armstrongs that Maddie’s liver was shutting down and the outlook was bleak.

“At that point, we decided we wanted to bring her home, so she could live out her last days in more comfort and surrounded by the love of her family,” said Farah. “The Butterfly Team from Houston Hospice helped us tremendously.”

After arriving home, Maddie struggled for each breath and to stay with her parents and big sister. Held tightly and constantly in their arms, she finally gave up her fight when put down for a diaper change. Little Maddie was only 12 days old, but touched many lives in that short time.

“Our daughter’s life was cut way too short, but we look forward to being reunited with her some day, in all her wholeness and completeness,” said Patrick. “We are continuing her fight now in the form of raising awareness of CMV. We call it Maddie’s Mission.”

The Armstrongs have raised more than $35,000 for ‘Stop CMV,’ a nonprofit organization working to prevent and eliminate congenital CMV and to improve the lives of all people affected by congenital CMV. Learn more about CMV at the CDC.

Three simple steps can help a pregnant woman avoid infection with CMV:

  • Do not share food or drink with a toddler.
  • Do not kiss a toddler on the lips or cheek. Hug the child or kiss on the top of the head.
  • Wash your hands carefully after changing diapers or wiping a bottom.