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Fighting with a smile

Army wife and mother leads local effort against CMV

Christie Little enjoys a light moment with her son, Matthew, who suffers from congenital cytomegalovirus (CMV). /J.M. Simpson

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At three years of age, Matthew Little is a happy boy. "His gift is his smile," said his mother, Christie, as she held his hand. "You cannot have a bad day with him."

Born with congenital cytomegalovirus (CMV), Matthew is severely disabled. CMV is the most common congenital infection cause of birth defects and childhood disabilities in the United States. Here are some facts about congenital CMV:

  • Approximately 1 in every 150 children is born with congenital CMV.  Of those, 1 in 5 will be born with or will develop permanent disability.
  • There are approximately 400 fatal cases of congenital CMV each year
  • CMV is the second leading cause of intellectual disability, second only to Downs syndrome.
  • About half of all expectant mothers have never been infected with CMV, which puts their unborn baby at risk.
  • There is no cure, no vaccine, and no pill to take

When a child or adult contracts the virus, the immune system renders it harmless. But when an unborn baby contracts the virus, it produces devastating consequences. "If you are not already pregnant, find out your CMV status prior to getting pregnant," said Little. "If your blood test indicates that you have never had CMV, discuss the risks with your doctor and follow (Centers for Disease Control) guidelines for taking extra hygienic precautions."

As with many viruses, contracting CMV may take only brief casual contact with a contaminated surface, object or person. For example, sharing a glass or eating utensil with an individual who is actively contagious with CMV is all it takes.

Research indicates that a significant number of pregnant women contract the virus from their toddlers or preschool-aged children who, in turn, have acquired the infection from other children at school or in a day care center.

"If you work with young children and have never been infected with CMV or don't know your status, you may want to consider changing to working with older children while you are pregnant," warned Little.

Specifically, congenital CMV crosses the mother's placenta to the unborn baby and attacks the central nervous system.  When a pregnant woman contracts the virus, she has a one in three chance of her baby contracting it.

Severe brain damage occurs to the unborn baby if the virus is passed during the first trimester.  But the symptoms of CVM are not readily apparent.

"Matthew appeared to be normal at birth," explained Little. "But at six months, he could not hold up his head." Not long after, she found her infant son lying against the side of his crib, his back arched due to a seizure, and not breathing. "I performed CPR and got him to a hospital," Little said.

After a number of tests, it was finally determined that Matthew had CMV. "It was a blood test for the virus that showed Matthew had little muscle control," said Little.

Since coming to Joint Base Lewis-McChord, the Madigan Healthcare System has provided developmental pediatric care for Matthew. "We have been completely blessed by the doctors there," Little said.

While the majority of babies born positive to congenital CMV never develop symptoms of disabilities, approximately 6,000 to 8,000 newborns each year in this country are disabled by the virus.  

Since the virus affects the brain, the results manifest themselves in a wide range of neurodevelopmental disabilities, including deafness, microcephaly (small brain), cerebral palsy, blindness or retinal scarring, intellectual disability and seizures.

Matthew suffers from cerebral palsy and deafness in his left ear. But his mother is driven to raise awareness to help find a cure. To combat CMV, Little has partnered with the Brendan B. McGinnis Congenital CMV Foundation (www.cmvfoundation.org) to host a 1.5 mile CMV Awareness Walk-n-Rollathon on May 21 around Lake Waughop in Lakewood's Fort Steilacoom Park. Registration begins at 9:30 a.m. Little hopes between 250 to 500 individuals will attend and raise at least $10,000 in donations.

"We have been holding these events across the country," wrote Tracy McGinnis, the foundation's founder and president, in an e-mail. "This will be our first year holding one in Washington state, and we are very excited about it."

Matthew sure is - he's all smiles.

For more information, contact Little at wacmvwalk@gmail.com or call (904) 335-1402.

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Comments for "Fighting with a smile" (3)

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Lisa Saunders said on May. 26, 2011 at 4:28am

To Christie Little and all CMV moms: I have tried to raise awareness since my daughter Elizabeth was born with congenital CMV in 1989. Although Eiizabeth had a good life, I'm sorry that women are still not being told about CMV prevention. If you are a CMV mom, I would be happy to give you a copy of my book, "Anything But a Dog! The perfect pet for a girl with CMV" (this story of Elizabeth and a homeless, old dog includes interviews with the country's leading CMV experts) as a gift. If anyone can purchase one, funds will be donated to CMV research and support if purchased through the National Congenital CMV Registry book site at: www.unlimitedpublishing.com/cmv/

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Judy Footen said on Oct. 11, 2011 at 5:10pm

My daughter has been diagnosed with CMV. She is living in the UAE and is receiving an experimental treatment in Italy. She had finally become pregnant after 4 IVF cycles and a tubal pregnancy. An inaccurate ultrasound was the reason that she was first tested for CMV which after lab work was found to be a primary infrection.
The most frustrating thing to me is that I have a Master's Degree in Education and have worked for Head Start for 17 years. We have many trainings but never once has CMV been mentioned even though the Center for Disease Control stated in 1995 that all child care workers should be educated.
I am planning on contacting National Head Start, our health department, and our licensing agency to demand the reason that we are not being told. Please call your state licensing agency and demand an accounting. You can also call your state Head
Start workers. They will have to answer.

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Christie Little said on Feb. 23, 2012 at 7:45pm

Judy, I know how frustrating it is, that is why I have decided to turn my frustrations and anger into something positive by helping spread awareness. You can visit www.stopcmv.org or www.cmvfoundation.org For more Information.

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