Elizabeth's Story... Awareness and Prevention of CMV

When a woman finds out she's pregnant, it can have many meanings.  For most, I think it's a feeling of anticipation mixed with a little fear.  Fear of the unknown.  In the process of creating a new life, there are some things that are beyond control, and mothers-to-be take one day at a time until the moment of truth arrives. 

I'm not big on statistics, but I think it's safe to say that most pregnancies result in the birth of a normal, healthy child.  That is, after all, what parents spend nine months hoping for.  However, sometimes it's the unknown that challenges parents in ways they never expected, almost daring them to live up to the physical and emotional demands of accepting and caring for a child with a disability. 

That's what happened to Lisa Saunders and her husband when their daughter, Elizabeth, was born on December 18, 1989, a bit earlier than her Christmas Eve due date.  Their story is not only inspirational but also alerts parents to the risks of birth defects caused by congenital cytomegalovirus (CMV).

Despite being more common a cause of disabilities than Down syndrome and the leading viral cause of mental retardation and hearing loss, the cause and prevention of this little publicized disease is not widely known.  The virus, known as a "silent virus", may have no symptoms for the mother, or it may present itself with mild to severe flu-like symptoms.  When Lisa was pregnant with Elizabeth, she did not know she was putting her unborn child at risk by running a  licensed daycare center in her home, caring for infants in Sunday School or kissing her toddler on the mouth.  Women who care for young children are at a higher risk for catching CMV because it is frequently shed in the saliva and urine of toddlers.  Pregnant woman should avoid kissing them on the mouth and sharing towels and utensils with them.  Hands should be washed thoroughly, especially after wiping runny noses, diaper changes and picking up toys that have been in a toddler's mouth. Taking those precautions can minimize the risk of infecting an unborn child.  The prevention measures seem simple, but what may be more difficult is getting the word out to all women so this disease can be nipped in the bud.  

I originally read about Elizabeth in my local newspaper and wrote about her in my Planetfeedback blog on October 19, 2006.  Lisa saw the post and recently contacted me.  After the article appeared in the newspaper, she was asked to be the parent representative for the Congenital CMV Conference held at the Centers for Disease Control and Prevention (CDC) in Atlanta.  She also shared with me her Christmas Story about Elizabeth.  Please take a moment to read it.  The story is heartwrenching, inspiring and informative.  This is the stuff real parents are made of... courage, perseverance and unconditional love.

Elizabeth lived to see her 16th birthday, but not her 17th Christmas.  Although her precious life was cut short, Elizabeth's time here was embraced by a loving and caring family.  No one ever knows for sure what's in store for their unborn child or how much time they will have together.  Each day spent with your child is a gift and a blessing that should never be taken for granted.  Being a parent is never easy.  Sometimes it takes a lot of strength to get through what's handed to us.  It's the meaningful memories we hold on to for dear life.  Those are the moments that give us the desire and determination to face another day.

Keep Elizabeth and her family in your thoughts this Christmas... and give your kids some extra hugs!

~Contributed by Venice

Comments

[Dawn]

Dammit Venice, here I am at work and the tears are streaming down my face. [Note to self: do not read Venice's posts at work any more.]

Seriously, though, thank you for posting this. What a wonderful story. If I could say anything to Lisa I would tell her that Elizabeth had 16 wonderful years with a family that loved her. You can hear that love in the story loud and clear.

[Venice]

I know how you feel. I was having trouble writing it.. so emotional.

The important thing is to spread the word. There's nothing worse than when bad things happen that are preventable. Tell everyone about this, especially pregnant women. Every doctor in the country should mention this to their female patients. All women need to be aware of this virus and how to minimize the risk.

[Lisa Saunders]

Venice,
Thank you for telling my daughter's story. It is wonderful to know that people are reading it already --that they are learning something that can spare others from the troubles Elizabeth had while on earth. But she enjoyed her life--I'm so glad that she didn't understand that other children had it a little easier! She loved Christmas too. The lights thrilled her. Merry Christmas to all who read this (or Happy Hannukah!) Love Lisa

[Venice]

Here is another case of CMV as reported by Fox News. Please watch.

http://www.myfoxphoenix.com/myfox/pages/Home/Detail?contentId=8097471&version=1&locale=EN-US&layoutCode=VSTY&pageId=1.1.1

[Lisa Saunders]

Hi! Did you see the big write-up in Wednesday Times Herald Record about the disease? It includes interviews with CMV experts plus photos of Elizabeth with her sister and now her headstone.
See: http://www.recordonline.com/apps/pbcs.dll/article?AID=/20090121/HEALTH/901210313

[Venice]

Hi, Lisa! I was thinking of you recently when I reminded myself that I haven't read your book yet. (Thank you for signing it, by the way.)

That's a great article... chock full of information. Thanks for letting me know. We only get Sunday's paper, but I read weekday articles on the feed. I must have missed this one.

Your effort to spread the word is remarkable. I really wish doctors would take this more seriously instead of considering it rare. I think the most effective and widespread way to inform women is through their doctors, and yet they don't make it a priority. That really needs to change.

The headstone is beautiful. I'm glad I got to see the picture. The THRecord has really done justice to this story. I hope they continue to follow your mission.

And now it's time for me to read your book!