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Tuesday, November 22, 2011

Those Who Can't Be Home for Christmas

 
Elizabeth and I when she was about three
While sipping coffee and paying bills at Starbucks in Mystic, CT, tears sprang when I heard the song that gets me every year--"I'll Be Home For Christmas."


As usual, I cried for the people I miss, but six years ago, I remember crying in thankfulness that our younger daughter, Elizabeth, managed to be home for yet another Christmas.


Expecting Elizabeth, due to arrive Christmas Eve of 1989, had been an exciting experience. But the moment she was born on December 18th, I felt a stab of fear. My immediate thought was, “Her head looks so small--so deformed.


The neonatologist said, "Your daughter's brain is very small with calcium deposits throughout. If she lives, she will never roll over, sit up, or feed herself." He concluded that Elizabeth's birth defects were caused by congenital cytomegalovirus (CMV). Women who care for young children are at a higher risk for catching it because preschoolers are the majority of carriers. Pregnant women need to be careful not to kiss young children on or around the mouth or share food or towels with them. Why hadn’t my OB/GYN warned me about this?


While I was pregnant with Elizabeth, I not only had a toddler of my own, but also ran a licensed daycare center in my home. I felt sick at what my lack of knowledge had done to my little girl. In milder cases, children with congenital CMV may lose hearing or struggle with learning disabilities later in life. But Elizabeth's case was not a mild one.


When my husband Jim heard Elizabeth's grim prognosis, he stared at her and said, “She needs me”--just like Charlie Brown with that pathetic Christmas tree.


Sixteen years later, I awoke feeling so proud of Elizabeth. It was her 16th birthday and just one week before her 17th Christmas. When “I’ll be home for Christmas” played on the radio, I cried thinking how hard Elizabeth fought to be home with us, overcoming several battles with pneumonia, major surgeries, and most recently, seizures. Weighing only 50 pounds, she looked funny to strangers as a result of her small head and adult teeth, but she was lovely to us with her long, brown hair, large blue eyes and soul-capturing smile. Although still in diapers, and could not speak or hold up her head, Elizabeth was very happy and loved going for long car rides--especially to look at Christmas lights. She also enjoyed school and being surrounded by people, paying no mind to the stares of “normal” children who thought she belonged on the "Island of Misfit Toys."


Less than two months after she turned 16, I dropped Elizabeth off at school. Strapping her into her wheelchair, I held her face in my hands, kissed her cheek, and said, “Now be a good girl today.” She smiled as she heard her teacher say what she said every time, “Elizabeth is always a good girl!” With that, I left.


At the end of the day, I got the call I had always feared. “Mrs. Saunders, Elizabeth had a seizure and she’s not breathing." The medical team did all they could, but she was gone.


While holding Elizabeth on his lap, my husband looked down into her partially open, lifeless eyes and cried, “No one is ever going to look at me again the way she did.”


Now, as I prepare to celebrate my sixth Christmas without her, it is with some heartache that I bring down the holiday decorations from the attic. Elizabeth used to love to sit on the couch with her big, old rescue dog Riley, and watch us decorate. Now, I perform one new Christmas tradition. I carefully unfold the black and red checked shirt Elizabeth wore on her last day and hang it over an empty chair beside our fireplace. Although she can't be home for Christmas, I feel that she is my “Tiny Tim” who would say if she could, “God bless us, everyone!”


Now, I only visit with Elizabeth in my dreams, but to feel her presence on a more continuous basis, I share her life with others. After speaking about her at the first international Congenital CMV conference held at the Centers for Disease Control in Prevention (CDC) in Atlanta, GA, scientists from all over the world approached to thank me for inspiring them to continue their work. Mothers, on the other hand, pushed their children towards me in wheelchairs and asked, “Why didn’t my OB/GYN tell me how to prevent this?” One mother even asked, "Learning what you did, why didn't you do all you could to shout it from the rooftops?"


Until OB/GYNs make CMV prevention a standard practice of care, I'm trying to "shout it from the rooftops" through my memoir, “Anything But a Dog! The perfect pet for a girl with congenital CMV.” I hope to reach a general audience by sharing the unusual account of how a big, old homeless dog found his way to Elizabeth's couch while including CMV prevention and treatment tips from the country’s leading CMV experts. The first chapter is available for viewing in Amazon’s e-book version at: www.amazon.com/dp/B005GRAE0I
 
When I asked the CDC what else I could do to help raise a CMV prevention message, I was told about a woman who might be able to advise me--Marti Perhach. Marti, a Pomona, CA, mother, lost her own daughter Rose in 1998, and along with other grieving parents, is successfully waging a campaign to raise awareness and prevent Group B Strep (GBS) disease in babies before birth through early infancy. When I told Marti that I thought it took guts to post a photo of her dead daughter on her website, she said, "But that is the only picture I have of Rose."


According to Marti, "Rose had a healthy fetal heartbeat moments before the OB stripped my membranes even though I had cultured positive for GBS. Rose was stillborn the next morning as GBS had infected her lungs and amniotic fluid. Some experts believe that invasive procedures push GBS closer to the baby where it is known to cross even intact membranes."


Marti believes that if the public works together, we can inspire a change in awareness and OB/GYN protocol that will save children from congenital CMV, the #1 viral cause of birth defects, as well as several other infections the CDC wishes to prevent.*


To help children come home for Christmas, hand out the CDC's fact sheet on preventing infections during pregnancy available at: http://www.cdc.gov/ncbddd/pregnancy_gateway/infections.html




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*End Note:


Anything But a Dog! raises funds for CMV research and parent support if purchased through the National Congenital CMV Disease Registry link at: http://www.unlimitedpublishing.com/cmv/


Now, due largely due to the collective efforts of Marti and many other parents through the Jesse Cause Foundation and the Group B Strep Association, OB/GYN's routinely test their patients for this bacteria prior to giving birth. Because much works still needs to be done to prevent GBS disease in babies before birth through early infancy, Marti co-founded Group B Strep International: http://www.groupbstrepinternational.org/


Janelle Greenlee of Sunnyvale, California, is another mother working hard to prevent infection –related disabilities in future children. The mother of twin sisters, Riley and Rachel, who were born disabled because Janelle caught cytomegalovirus (CMV), said, "We hope that women, families and friends will become familiar with the CMV virus and will take vigilant steps to prevent infection. We believe that it is better for women and their families to learn about CMV well prior to pregnancy so that they will never have to learn of it when it is too late." Janelle founded Stop CMV - The CMV Action Network: www.stopcmv.org

Friday, August 26, 2011

True Story of Lazy, Homeless Dog and Lonely, Little Girl Now an E-Book


Book includes how to prevent #1 birth defects virus

Mystic, CT---The publisher of "Anything But a Dog!" is now making the true story of a lazy, homeless dog and a lonely, little girl available as an e-book on Amazon.com. See Chapter One by clicking on the book’s image at: http://www.amazon.com/dp/B005GRAE0I

"Anything But a Dog! The perfect pet for a girl with congenital CMV," is a mother’s humorous and moving search for one pet to suit two very different daughters--one a tomboy, the other mentally and physically disabled from the # 1 birth defects virus, congenital CMV (cytomegalovirus).

Author and mother, Lisa Saunders, says “no” to her daughter Jackie’s pleas for a dog, fearing it will be too rambunctious around Jackie’s disabled little sister Elizabeth. But she does make her a promise she thinks will never come to pass: “If God brings a dog to our door, then you can have it.” In the meantime, the family wrestles with a series of dysfunctional pets: a flesh-eating hamster, an attack cat, killer ants and a very smelly rabbit. Then one day, the unexpected happens: a shivering, dirty puppy shows up at their door. But is this dog really Heaven-sent?

Published by Unlimited Publishing LLC in 2009, "Anything But a Dog!" includes the latest news on how to prevent the far-reaching but under-reported effects of congenital CMV, the #1 viral cause of birth defects--more common a cause of disabilities than Down syndrome. Women who care for young children are at greatest risk and need to practice caution around toddler saliva (by avoiding kissing them around the mouth and through careful hand-washing).

Saunders’ interview on USA 9 News: http://www.wusa9.com/video/default.aspx?bctid=34235723001

Reviews:

"If you're an animal lover, you'll love the critter tales as much as the special-needs storyline." Terri Mauro, About.com

“Saunders takes readers on a road trip as harrowing as any Dog Whisperer training challenge." Tonia Shakespeare, Rockland Magazine

“A hilarious set of pet tales! Lisa has given us yet another funny, tender tale of family life.” Dr. Elisabeth Schafer, author of Vegetable Desserts: Beyond Carrot Cake and Pumpkin Pie

About Lisa Saunders

Lisa Saunders currently lives in Mystic, CT, with her husband and beagle/basset hound. She the Congenital CMV Foundation parent representative, and in addition to Anything But a Dog!, is the author of Ever True: A Union Private and His Wife and Ride a Horse, Not an Elevator. See her work at: http://www.authorlisasaunders.com/

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Learn more about Congenital CMV:

Centers for Disease Control and Prevention (CDC): http://www.cdc.gov/cmv/index.html

Saunders’ blog: http://congenitalcmv.blogspot.com/

Lisa Saunders Discussing Anything But a Dog!:
http://www.youtube.com/user/LisaSaundersCom?feature=mhee#p/u/14/ludkrnq9vTQ

Other reviews of Anything But a Dog!

"I just loved it! An entertaining yet honest look at what it's like to raise a child with disabilities."- Janelle Greenlee,.stopcmv.org, mother of twin daughters Riley and Rachel, born with Congenial CMV

"Saunders weaves laughter and tears, congenital CMV education and the challenges of raising two daughters – one a tomboy and the other severely disabled." Deborah J. Botti, Times Herald Record

"I congratulate Lisa on producing a very good piece of work," says Gail J Demmler-Harrison, MD, Director of the Congenital CMV Disease Registry and Research Program, Baylor College of Medicine.

“A mother of a daughter born with severe disabilities uses humor to candidly relate experiences of acceptance and daily hardships with the people and pets forever changed by her child’s life. The book also contains resources, contacts and support for anyone whose life is touched by CMV (congenital cytomegalovirus.)” Joni and Friends

Having walked the same road, I've lived Lisa's feelings and stories and ultimately shared the same unshakeable and deep, deep love a mother has for her CMV child." Tracy McGinnis, Founder of the Brendan B. McGinnis Congenital CMV Foundation and mother of Brendan born with congenital CMV

“A remarkable story, told in a way that is powerful and unforgettable. The dialogue is delightful! It's almost impossible to end a book in a truly satisfying way, but Lisa has succeeded 100%. I have a pregnant friend who works at a preschool and daycare facility who definitely needs to know about congenital CMV. I plan to print out some information for her immediately.” Krista Niles, Graduate Student, University of Chicago

"I read this straight through in one sitting and loved it! It was moving—and funny! The appendages about congenital CMV contain such valuable information, and the addendums are very moving. This book is an incredible contribution." Mary Goodin, M.A., Educator

Thursday, June 23, 2011

Why did my daughter die?


by Lisa Saunders

Why did my daughter die? Because I didn't know about congenital CMV (cytomegalovirus) prevention.

Today is Congenital CMV Awareness Day and June is Congenital CMV Awareness Month. Perhaps this new attempt at a prevention message will help other children enjoy a healthier childhood.

Expecting our second child, due to arrive Christmas Eve of 1989, had been an exciting experience. What a Christmas present! But the moment Elizabeth was born on December 18th, I felt a stab of fear. My immediate thought was, “Her head looks so small–so deformed.

The neonatologist declared, "Your daughter has profound microcephaly — her brain is very small with calcium deposits throughout. If she lives, she will never roll over, sit up, or feed herself." He concluded that Elizabeth's birth defects were caused by congenital cytomegalovirus (CMV) — a virus that may have no symptoms for the mother.

The Centers for Disease Control and Prevention (CDC) estimates that about one in 150 children is born with CMV infection and approximately one in 750 is born with or develops permanent disabilities because of it. CMV is the #1 viral cause of mental retardation and hearing loss—more common a cause of disabilities than Down syndrome. Women who care for young children are at a higher risk for catching it because preschoolers are the majority of carriers. Pregnant women need to be careful not to kiss young children on or around the mouth or share food or towels with them. Hands must be washed after wiping runny noses, diaper changes, etc. Why hadn’t my OB/GYN warned me about this?

While I was pregnant with Elizabeth, I not only had a toddler of my own, but also ran a licensed daycare center in my home. I felt sick at what my ignorance had done to my little girl. In milder cases, children with congenital CMV may lose hearing or struggle with learning disabilities later in life. But Elizabeth's case was not a mild one.

“My life is over,” I thought. I asked God to heal her instantly, but He didn’t. So, I begged him to kill me and prayed to be crushed to death in an earthquake. I just couldn’t handle raising such an afflicted child, period.

Thankfully my husband Jim’s love for Elizabeth far outweighed his grief. He said, “She needs me. I want to protect her from this cruel world she has been born into.” He was just like Charlie Brown with that pathetic Christmas tree.

It took about a year, but I eventually stopped praying that a nuclear bomb would drop on my house so I could escape my overwhelming anguish. Life did become good again--but it took a lot of help from Jim, family, friends, the Book of Psalms, and a couple of Valium! When Elizabeth finally figured out how to look into my eyes, she smiled—and I was hooked.

On Elizaeth's 16th birthday, I awoke feeling so proud of her. How hard she fought to remain with us in the land of the living–overcoming several battles with pneumonia, major surgeries and most recently, seizures. Weighing only 50 pounds, she looked funny to strangers as a result of her small head and big adult teeth, but she was lovely to us with her long, thick brown hair, large blue eyes and soul-capturing smile. Although Elizabeth was still in diapers, and could not speak or hold up her head, she was a very happy young lady with a love of adventure-- long car rides being one of her favorites. She especially enjoyed going to school and being surrounded by people, paying no mind to the stares of “normal” children.

Less than two months after she turned 16, I dropped Elizabeth off at school. Strapping her into her wheelchair, I held her face in my hands, kissed her cheek, and said, “Now be a good girl today.” She smiled as she heard her teacher say what she said every time, “Elizabeth is always a good girl!” With that, I left.

At the end of the day, I got the call I had always feared. “Mrs. Saunders, Elizabeth had a seizure and she’s not breathing. We called 911.”

The medical team did all they could, but she was gone. While holding Elizabeth on his lap, my husband looked down into her partially open, lifeless eyes and cried, “No one is ever going to look at me again the way Elizabeth did.” I knew he was right. No one adored us as Elizabeth did.

Thank you for reading about Elizabeth.

Sincerely,

Lisa Saunders, Mystic, CT

P.S. In an effort to record the fun I had raising Elizabeth beside her tomboy sister, Jackie, I wrote the book, “Anything But a Dog! The perfect pet for a girl with congenital CMV.” It is the unusual story of how a homeless, old dog found his way to Elizabeth's couch. The book concludes with tips for preventing congenital CMV from the country’s leading CMV experts and gives information on emerging treatments for women who find they have contracted CMV while pregnant. Available through the National Congenital Disease Registry, “Anything But a Dog!” raises funds for congenital CMV parent support and research if purchased through: http://www.unlimitedpublishing.com/cmv/

To see photos of Elizabeth growing up, please visit my website at: http://www.authorlisasaunders.com/

Tuesday, June 7, 2011

Stop CMV From Hurting Your Baby

Yesterday, the Centers for Disease Control and Prevention (CDC) highlighted how to prevent the #1 viral cause of birth defects, congenital CMV (cytomegalovirus), on their homepage. According to the CDC, "In the U.S. more children have disabilities due to congenital cytomegalovirus (CMV) infection than other conditions present at birth."

I hope the CDC's work toward reducing congenital CMV will encourage OB/GYNs to make CMV prevention a part of their standard practice of care so women of child-bearing age will know how to reduce their chances of contracting it—namely by not sharing utensils with young children or kissing them around the mouth, and through careful hand-washing.

I didn’t know about CMV prevention until my daughter, Elizabeth, was born severely disabled by the virus in 1989. Though a happy little girl, Elizabeth had cerebral palsy and epilepsy, and was mentally, visually and hearing impaired. She died in 2006 at the age of 16 during a seizure. Elizabeth was profoundly affected by CMV, but other children's symptoms aren't so severe--but that doesn't remove the anguish of mothers who didn't know about CMV prevention until it was too late for their child.

When I spoke at the international 2008 Congenital CMV Conference at the CDC in Atlanta, GA, mothers came up to me afterwards with their children in wheelchairs or wearing hearing aids, and asked, “Why didn’t my OB/GYN warn me how to protect my baby from CMV?”

In the article, “Washing our hands of the congenital cytomegalovirus disease epidemic,” Drs. Cannon and Davis state: “The virtual absence of a prevention message has been due, in part, to the low profile of congenital CMV. Infection is usually asymptomatic in both mother and infant, and when symptoms do occur, they are non-specific, so most CMV infections go undiagnosed.”

More than half of OB/GYNs surveyed by the American College of Obstetricians and Gynecologists (ACOG) admitted they don't routinely caution their patients about CMV, according to the study, "Knowledge and Practices of Obstetricians and Gynecologists Regarding Cytomegalovirus Infection During Pregnancy --- United States, 2007."

According to a 2006 survey reported in the article, "Knowledge and Awareness of Congenital Cytomegalovirus Among Women," of the 643 women surveyed about their CMV awareness, only 22% had heard of it and most of those could not correctly identify modes of CMV transmission or prevention.

To reduce chances of contracting congenital CMV, women of childbearing age should:
· Refrain from kissing children around the mouth--give them a big hug and a kiss on the top of the head instead.
· Refrain from sharing food and utensils with others, especially children.
· Wash hands diligently with soap and water after wiping runny noses, changing diapers, picking up toys, etc. If soap and water are not available, use alcohol-based hand gel.

Lenore Pereira, PhD, Founder of the Congenital Cytomegalovirus Foundation, University of California, San Francisco, said, “Ultimately, we hope that awareness will lead to universal testing of pregnant women and their babies, improved therapies, and vaccines for prevention of disease.”

In an effort to raise a congenital CMV prevention message, I wrote a light-hearted memoir about raising my daughter Elizabeth alongside her big, tomboy sister and a series of dysfunctional pets. It includes the unusual story of how a 100-pound, homeless dog found his way to Elizabeth’s couch plus interviews with the country’s leading CMV experts who speak about CMV prevention and emerging treatments. Anything But a Dog! The perfect pet for a girl with congenital CMV raises funds for CMV research and parent support at the National Congenital CMV Disease Registry if purchased through this link.

For more information about congenital CMV or how you can protect your pregnancy, contact Gail J Demmler MD, Professor of Pediatrics at Baylor College of Medicine, and the Director of the Congenital CMV Disease Registry, Clinic and Research Program. The Registry, located in Houston, TX, supports CMV research, disseminates information and provides a parent support group. Phone: (832) 824-4387.

To learn more about my daughter's life with CMV, her dog, and CMV prevention, see my television interview on USA 9 News.

How you can help stop CMV:
1. Print out the brochures and flyers found on the CDC website and at Stop CMV--The Action Network. Ask your doctors to post them on their walls or hand them out. The Stop CMV--the Action Network website has CMV awareness flyers available in several languages. Click here for the English one.

2. Write letters to the editors of magazines, your local newspapers and broadcast media (my Congenital CMV blog includes samples).

The next International Conference on Congenital CMV will be held in San Francisco, CA, in 2012.

Friday, January 21, 2011

Annual Christmas Message


Every year on December 18, I wake up in our home decorated for Christmas and think, "My little Elizabeth was born today." As I enter the living room and see the stockings "hung with care" and the empty chair placed beside the fireplace, I know I can't get through the day without e-mailing my thoughts to new friends, the media, and to anyone I think will listen to me. This year, this is what arrived in people's inboxes at 7:27 a.m.:

Elizabeth: A Christmas Blessing–Even Now
by
Lisa Saunders

Expecting our second child, due to arrive Christmas Eve of 1989, had been an exciting experience. What a Christmas present! But the moment Elizabeth was born on December 18th, I felt a stab of fear. My immediate thought was, “Her head looks so small–so deformed.

The neonatologist declared, "Your daughter has profound microcephaly — her brain is very small with calcium deposits throughout. If she lives, she will never roll over, sit up, or feed herself." He concluded that Elizabeth's birth defects were caused by congenital cytomegalovirus (CMV) — a virus that may have no symptoms for the mother.

The Centers for Disease Control and Prevention (CDC) estimates that about one in 150 children is born with CMV infection and approximately one in 750 is born with or develops permanent disabilities because of it. CMV is the #1 viral cause of mental retardation and hearing loss—more common a cause of disabilities than Down syndrome. Women who care for young children are at a higher risk for catching it because preschoolers are the majority of carriers. Pregnant women need to be careful not to kiss young children on or around the mouth or share food or towels with them. Hands must be washed after wiping runny noses, diaper changes, etc. Why hadn’t my OB/GYN warned me about this?

While I was pregnant with Elizabeth, I not only had a toddler of my own, but also ran a licensed daycare center in my home. I felt sick at what my ignorance had done to my little girl. In milder cases, children with congenital CMV may lose hearing or struggle with learning disabilities later in life. But Elizabeth's case was not a mild one.

“My life is over,” I thought. I asked God to heal her instantly, but He didn’t. So, I begged him to kill me and prayed to be crushed to death in an earthquake. I just couldn’t handle raising such an afflicted child, period.

Thankfully my husband Jim’s love for Elizabeth far outweighed his grief. He said, “She needs me. I want to protect her from this cruel world she has been born into.” He was just like Charlie Brown with that pathetic Christmas tree.

It took about a year, but I eventually stopped praying that a nuclear bomb would drop on my house so I could escape my overwhelming anguish. Life did become good again--but it took a lot of help from Jim, family, friends, the Book of Psalms, and a couple of Valium! When Elizabeth finally figured out how to look into my eyes, she smiled—and I was hooked. Like George Bailey standing on the bridge in the movie, “It’s a Wonderful Life,” I too cried, “I want to live again!”

Sixteen years later, I awoke feeling so proud of Elizabeth. It was her 16th birthday and just one week before her 17th Christmas. Listening to nostalgic songs like, “I’ll be home for Christmas,” I thought about how hard she fought to be home with us for another Christmas–overcoming several battles with pneumonia, major surgeries and most recently, seizures. Weighing only 50 pounds, she looked funny to strangers as a result of her small head and big adult teeth, but she was lovely to us with her long, thick brown hair, large blue eyes and soul-capturing smile. Although Elizabeth was still in diapers, and could not speak or hold up her head, she was a very happy young lady with a love of adventure-- long car rides to look at Christmas lights being one of her favorites. She especially enjoyed going to school and being surrounded by people, paying no mind to the stares of “normal” children who thought that like Rudolph the Red-Nosed Reindeer, she belonged on the Island of Misfit Toys.

Less than two months after she turned 16, I dropped Elizabeth off at school. Strapping her into her wheelchair, I held her face in my hands, kissed her cheek, and said, “Now be a good girl today.” She smiled as she heard her teacher say what she said every time, “Elizabeth is always a good girl!” With that, I left.

At the end of the day, I got the call I had always feared. “Mrs. Saunders, Elizabeth had a seizure and she’s not breathing. We called 911.”

The medical team did all they could, but she was gone. While holding Elizabeth on his lap, my husband looked down into her partially open, lifeless eyes and cried, “No one is ever going to look at me again the way Elizabeth did.” I knew he was right. No one adored us as Elizabeth did.

Now, as I prepare to celebrate my fifth Christmas without her, it is with some heartache that I lift the holiday decorations from their boxes. Elizabeth used to love to sit on the couch with her big, old dog Riley, and watch me decorate.

I have found a way, however, to still include Elizabeth in our Christmas traditions. Every year, I unfold the black and red checked shirt she wore on her last day and hang it over an empty chair beside our fireplace. She is forever my “Tiny Tim” who would say to us if she could, “God bless us, everyone!”

Thank you for reading about Elizabeth.

Sincerely,

Lisa Saunders, Mystic, CT

P.S. In an effort to record the fun I had raising Elizabeth beside her tomboy sister, Jackie, I wrote the book, “Anything But a Dog! The perfect pet for a girl with congenital CMV.” It is the unusual story of how a homeless, old dog found his way to Elizabeth's couch. The book concludes with tips for preventing congenital CMV from the country’s leading CMV experts and gives information on emerging treatments for women who find they have contracted CMV while pregnant. Available through the National Congenital Disease Registry, “Anything But a Dog!” raises funds for congenital CMV parent support and research if purchased through: http://www.unlimitedpublishing.com/cmv/ To see photos of Elizabeth growing up, please visit my website at: www.authorlisasaunders.com