Sunday, December 15, 2013

Christmas 2013

I update my blog every year with this message and photo of the empty chair we place beside our fireplace (you can watch Elizabeth and her dog in my short USA 9 News clip): 


The Empty Christmas Chair 2013--holidays without my daughter
 
by
Lisa Saunders

Like many who have lost a loved one,  I tear up this time of year when I hear Bing Crosby sing “I'll Be Home for Christmas" on the car radio. I cry for my daughter Elizabeth would have turned 24 on December 18, 2013.
 
Expecting Elizabeth, due to be born on Christmas Eve of 1989, had been an exciting experience. But the moment she arrived on the 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 I 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.
It took me about a year, but I eventually stopped praying that a nuclear bomb would drop on my house so I could escape my overwhelming anguish over Elizabeth's condition. Life did become good again—but it took a lot of help from family, friends, some Valium, and the Book of Psalms. We were eventually able to move forward as a happy, "normal" family.

Sixteen years later, I awoke feeling so proud of Elizabeth. It was her 16th birthday and just one week before her 17th Christmas. When the song “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 unable to speak or hold up her head, Elizabeth was very happy and loved going for long car rides. She especially enjoyed going to 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’s body 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.”

As I prepare to celebrate my seventh Christmas without her, it was with some heartache that I brought down the holiday decorations from the attic. Elizabeth used to love to sit on the couch with her big, once homeless old dog Riley, and watch us decorate. (Their story is told in my memoir, Anything But a Dog! The perfect pet for a girl with congenital CMV.)

Now, I perform a 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!”

Although I miss Elizabeth, I’m glad she is free from suffering, glad she is safe in her new, Heavenly home. When my time comes, I will see  her again. My father wrote a fairytale that I found very helpful after Elizabeth died.  I have made it available as a free e-book, Surviving Loss: The Woodcutter's Tale.* It includes comments on grieving from Julie Russell, a licensed clinical social worker, and heart-felt illustrations by Elizabeth's aunt, Marianne Greiner. Download your free e-book in several different formats at: https://www.smashwords.com/books/view/283862

 
The Only Thing I Can Do for Elizabeth Now

Since Elizabeth no longer needs my care, the only thing I can do for her now is to care for those not yet born—to prevent them from suffering as Elizabeth did. I do that by speaking and writing about congenital CMV prevention.

After presenting her life at the international Congenital CMV conference held at the Centers for Disease Control (CDC) in Atlanta, GA, in 2008, 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 light-hearted memoir about my girls and their series of dysfunctional pets, Anything But a Dog! The perfect pet for a girl with congenital CMV, which culminates with the unusual account of how a big, old homeless dog found his way to Elizabeth's couch and of their quiet bond. I also try to interest the media in Elizabeth's story and how her death could have been prevented (see one newspaper interview at: What every pregnant woman needs to know.)


The Day's Grace magazine featured Elizabeth's story and the lack of congenital CMV prevention education on December 18, 2013--her 24th birthday. It is available for viewing at: Loss and love: Author raises awareness about preventable birth defect 

Short news clip about congenital CMV and my daughter Elizabeth and her dog at: USA 9 News clip)


I am, however, excited to report that in 2013, one state, Utah, has finally made congenital CMV education mandatory through their Health Department. See: http://www.health.utah.gov/cshcn/CHSS/CMV.html

Many who work to prevent the kind of  suffering Elizabeth endured, in addition to mandatory CMV education, are proposing pregnant women get a blood test to see if they have a primary infection. One benefit of that is the current nationwide study to test the efficacy of giving CMV infected women CMV antibodies. See: Current CMV Trial--need participants
 
What can you do to prevent unborn children from suffering as my Elizabeth did?
You can:
1. Tell your friends and family how to prevent congenital CMV infection (namely through refraining from kissing their toddlers around the mouth and through careful hand washing when handling their saliva and urine). See http://www.cdc.gov/cmv/.



2.
Ask you representatives to follow the example of the State of Utah and make congenital CMV education mandatory through the state's Health Department. You may use my letter posted on my blog, http://congenitalcmv.blogspot.com/, as a sample: http://congenitalcmv.blogspot.com/2013/07/utah-health-dept-offers-ccmv-education.html  
 


3. Share information about my memoir, Anything But a Dog! The perfect pet for a girl with congenital CMV, which is available for free viewing (the first several pages) on Amazon by clicking on the "LOOK INSIDE" feature (if purchased through the National CMV Disease Registry, a portion of the proceeds go to parents and CMV research.) Reviews of my memoir include: "Saunders takes readers on a road trip as harrowing as any Dog Whisperer training challenge...Beyond the laughs about a dizzying pet search, Saunders' dog tale is about a mother who candidly reveals her family's burden, love, and acceptance of a daughter born with severe disabilities—and the people, and pets, forever touched by her life." Tonia Shakespeare, Rockland Magazine
and:

"Sheds light on a disorder that is preventable and not talked about enough. If you're an animal lover, you'll love the critter tales as much as the special-needs storyline...really lifted my spirits." Terri Mauro, About.com

4. Helps others who work to prevent CMV. You can adjust the following letter to suit your interest/concern:
I am the parent representative of the Congenital CMV Foundation, have spoken at international CMV conferences co-sponsored by the Centers for Disease Control and Prevention, and am the author of the memoir, "Anything But a Dog! The perfect pet for a girl with congenital CMV".
 
My daughter Elizabeth was born severely disabled from congenital CMV. I had a miscarriage three months before she was conceived and no one suggested I get tested for CMV before getting pregnant again. 
 
If you work to promote the need for more participants in your study, the most recent article published about my daughter's life with congenital CMV and my work to educate the public was in the December 18 issue of Grace magazine.
See: Loss and love: Author raises awareness about preventable birth defect
 
You can see Elizabeth and my work to raise awareness in this short USA 9 News clip.
 
If you need any help promoting your work, please let me know what to do.
 
 
 
 
 
 
 
5. Share the following congenital CMV information and prevention sources with the media and/or doctors:


“Washing our hands of the congenital cytomegalovirus disease epidemic”: http://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=1182379


"Knowledge and Practices of Obstetricians and Gynecologists Regarding Cytomegalovirus Infection During Pregnancy --- United States, 2007": www.cdc.gov/mmwr/preview/mmwrhtml/mm5703a2.htm


2006 PubMed Central article, "Knowledge and Awareness of Congenital Cytomegalovirus Among Women," http://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=1779612


Article quoting OB/GYN why CMV prevention isn't discussed in Fit Pregnancy Magazine, June/July 2008 issue: Protect Your Baby From A Tot-Borne Virus or visit: www.fitpregnancy.com/yourbaby/babycare/40723077.html?subsection=baby_health_development

For more information about congenital CMV and how you can protect your pregnancy, contact:

Gail J Demmler MD, Professor of Pediatrics at Baylor College of Medicine, Director of Congenital CMV Disease Registry, Clinic and Research Program at
gjdemmle@texaschildrenshospital.org or visit: www.bcm.edu/pedi/infect/cmv. The Registry supports CMV research, disseminates information and provides a parent support group. Registry: (832) 824-4387.

Michael J. Cannon, Ph.D., Research Epidemiologist, CDC, can be reached at
mcannon@cdc.gov

Lenore Pereira, Ph.D., Congenital CMV Foundation founder and Professor, Microbiology and Virology, Cell and Tissue Biology Department, University of California San Francisco, can be reached at lenore.pereira@ucsf.edu, or visit www.congenitalcmv.org/ which includes Members of the Scientific Advisory Committee with their contact information. Dr. Pereira has studied immune responses to CMV infection and molecular biology of viral glycoproteins for over 25 years.

*Surviving Loss: The Woodcutter's Tale (it also available as a paperback on Amazon)
This booklet, a grandfather’s touching fairy tale, is illustrated with heart-felt simplicity. It’s a story that soothes the aching hearts of children and adults alike, as it reveals the process of healing after the death of a loved one.

The afterward, written by a psychotherapist, seeks to help individuals understand the grieving process so they can return to a life with purpose and meaning. Further insight is provided by a mother who lost her 16-year-old daughter. She shares the ways in which she is trying to move forward to honor the memory of her child.

This message of hope enables readers to begin speaking of their own losses, whether by discussing the fairytale or identifying with the mother’s experience. The portion on understanding and coping with the natural process of grief gives individuals tools for healing.

Surviving Loss: A Woodcutter’s Tale is ideal for anyone who has experienced loss and provides professionals with an invaluable resource for assisting the bereaved.   
 




 



Thursday, July 18, 2013

Utah Health Dept. Offers cCMV Education--Can Our State?

To find your state representatives, visit your state's website (I live in Conn., so I went to: http://www.cga.ct.gov/asp/menu/CGAFindLeg.asp). This is a sample letter I wrote to my representatives. You are welcome to take excerpts applicable to you.
 
 
I live in Mystic, CT.
 
My daughter Elizabeth was born severely disabled from congenital CMV(cytomegalovirus) because no one told me I shouldn't kiss my own toddler around the mouth (toddlers are the majority of the carriers of CMV) or that I was putting my pregnancy at risk by operating a daycare center in my home for toddlers.  A few days ago, The New London Day's Grace magazine did a story on my work to educate the public about CMV prevention in their December 18, 2013 issue.
See: Loss and love: Author raises awareness about preventable birth defect
 
I am wondering if you would be willing to help me prevent others from suffering as Elizabeth did by sponsoring a CMV education bill similar to what just  passed in Utah requiring Utah's Health Department to educate the public on how to prevent this disease (see the information below my signature).
 
I am the parent representative of the Congenital CMV Foundation, have spoken at international CMV conferences sponsored by the Centers for Disease Control and Prevention, and am the author of the memoir, "Anything But a Dog! The perfect pet for a girl with congenital CMV".
 
You can see Elizabeth and my work to raise awareness on in my short USA 9 News clip.
 
Congenital CMV causes more disabilities than Down syndrome, but the public is largely unaware how to prevent it. According to the CDC, few women have heard of congenital CMV and more than half of OB/GYNs surveyed admitted they don't warn their patients about it, despite the fact that:
 
·        Every hour, congenital CMV causes one child to become disabled
·        Each year, about 30,000 children are born with congenital CMV infection
·        About 1 in 750 children is born with or develops permanent disabilities due to CMV
·        About 8,000 children each year suffer permanent disabilities caused by CMV
 
The CDC makes the following recommendations on simple steps you can take to avoid exposure to saliva and urine that might contain CMV:

Wash your hands often with soap and water for 15-20 seconds, especially after
·        changing diapers
·        feeding a young child
·        wiping a young child’s nose or drool
·        handling children’s toys
 
In Addition:
·        Do not share food, drinks, or eating utensils used by young children
·        Do not put a child’s pacifier in your mouth
·        Do not share a toothbrush with a young child
·        Avoid contact with saliva when kissing a child
·        Clean toys, countertops, and other surfaces that come into contact with children’s urine or saliva
 
To learn more about congenital CMV from the CDC, visit: cdc.gov/ncbddd/pregnancy_gateway/cmv/index.html 
 
Thank you!
Lisa Saunders
Mystic, CT 06355
 
DETAILED INFORMATION ABOUT UTAH'S WORK TO PREVENT CMV-RELATED BIRTH DEFECTS:
"Legislation was passed in Utah, and now The Utah Department of Health is required to educate women about the dangers of CMV in pregnancy as well as ways to prevent it." See: http://le.utah.gov/code/TITLE26/htm/26_10_001000.htm 
 
 

 
 
 
Utah Health Code
Family Health Services
Section 10
Cytomegalovirus (CMV) public education and testing.
       
26-10-10.   Cytomegalovirus (CMV) public education and testing.

            (1) As used in this section "CMV" means cytomegalovirus.
            (2) The department shall establish and conduct a public education program to inform pregnant women and women who may become pregnant regarding:
            (a) the incidence of CMV;
            (b) the transmission of CMV to pregnant women and women who may become pregnant;
            (c) birth defects caused by congenital CMV;
            (d) methods of diagnosing congenital CMV; and
            (e) available preventative measures.
            (2) The department shall provide the information described in Subsection (2) to:
            (a) child care programs licensed under Title 26, Chapter 39, Utah Child Care Licensing Act, and their employees;
            (b) a person described in Subsection 26-39-403(1) (c), (f), (g), (h), (j), or (k);
            (c) a person serving as a school nurse under Subsection 53A-11-204;
            (d) a person offering health education in a school district;
            (e) health care providers offering care to pregnant women and infants; and
            (f) religious, ecclesiastical, or denominational organizations offering children's programs as a part of worship services.
            (3) If a newborn infant fails the newborn hearing screening test(s) under Subsection 26-10-6(1), a medical practitioner shall:
            (a) test the newborn infant for CMV before the newborn is 21 days of age, unless a parent of the newborn infant objects; and
            (b) provide to the parents of the newborn infant information regarding:
            (i) birth defects caused by congenital CMV; and
            (ii) available methods of treatment.
            (4) The department shall provide to the family and the medical practitioner, if known, information regarding the testing requirements under Subsection (3) when providing results indicating that an infant has failed the newborn hearing screening test(s) under Subsection 26-10-6(1).
            (5) The department may make rules in accordance with Title 63G, Chapter 3, Utah Administrative Rulemaking Act, as necessary to administer the provisions of this section.

Enacted by Chapter 45, 2013 General Session
 


Here is the Utah's Department of Health link that provides the following resources and info:

http://www.health.utah.gov/cshcn/CHSS/CMV.html

Cytomegalovirus (CMV) Public Health Initiative
H.B. 81 (2013 General Session) UCA 26-10-10, whose Chief Sponsor was Representative Ronda Rudd Menlove, will go into effect on July 1, 2013. This law (Cytomegalovirus Public Education and Testing) directs the Utah Department of Health to create a public education program to inform pregnant women and women who may become pregnant about the occurrence of CMV, the transmission of CMV, the birth defects that CMV can cause, methods of diagnosis, and available preventative measures. This law also directs medical practitioners to test infants, who fail two newborn hearing screening tests, for congenital CMV and inform the parents of those infants about the possible birth defects that CMV can cause and the available treatment methods.
CMV infection during pregnancy can harm your baby. Cytomegalovirus (sy toe MEG a low vy rus), or CMV, is a common virus that infects people of all ages. Most CMV infections are "silent", meaning the majority of people who are infected with CMV have no signs or symptoms, and there are no harmful effects. However, when CMV oDaisy4.jpegccurs during a woman’s pregnancy, the baby can become infected before birth.  CMV infection before birth is known as “congenital CMV”.  When this happens, the virus gets transmitted to the unborn infant and can potentially damage the brain, eyes and/or inner ears.
About 1 of every 5 children born with congenital CMV infection will develop permanent problems, such as hearing loss or developmental disabilities.
Congenital CMV is the leading non-genetic cause of childhood hearing loss.
CMV Core Facts
Congenital CMV and Hearing Loss
CMV What Women NEED TO KNOW
CMV What Childcare Providers NEED TO KNOW
CMV Utah Flyer
For Health Care and Newborn Hearing Screening Providers:
For more information, contact the Utah Department of Health Early Hearing Detection and Intervention program at (801) 584-8215 or smcvicar@utah.gov.
Page last updated 07/03/2013 14:57:02



Utah Health Code
Family Health Services
Section 10
Cytomegalovirus (CMV) public education and testing.
       
26-10-10.   Cytomegalovirus (CMV) public education and testing.

            (1) As used in this section "CMV" means cytomegalovirus.
            (2) The department shall establish and conduct a public education program to inform pregnant women and women who may become pregnant regarding:
            (a) the incidence of CMV;
            (b) the transmission of CMV to pregnant women and women who may become pregnant;
            (c) birth defects caused by congenital CMV;
            (d) methods of diagnosing congenital CMV; and
            (e) available preventative measures.
            (2) The department shall provide the information described in Subsection (2) to:
            (a) child care programs licensed under Title 26, Chapter 39, Utah Child Care Licensing Act, and their employees;
            (b) a person described in Subsection 26-39-403(1) (c), (f), (g), (h), (j), or (k);
            (c) a person serving as a school nurse under Subsection 53A-11-204;
            (d) a person offering health education in a school district;
            (e) health care providers offering care to pregnant women and infants; and
            (f) religious, ecclesiastical, or denominational organizations offering children's programs as a part of worship services.
            (3) If a newborn infant fails the newborn hearing screening test(s) under Subsection 26-10-6(1), a medical practitioner shall:
            (a) test the newborn infant for CMV before the newborn is 21 days of age, unless a parent of the newborn infant objects; and
            (b) provide to the parents of the newborn infant information regarding:
            (i) birth defects caused by congenital CMV; and
            (ii) available methods of treatment.
            (4) The department shall provide to the family and the medical practitioner, if known, information regarding the testing requirements under Subsection (3) when providing results indicating that an infant has failed the newborn hearing screening test(s) under Subsection 26-10-6(1).
            (5) The department may make rules in accordance with Title 63G, Chapter 3, Utah Administrative Rulemaking Act, as necessary to administer the provisions of this section.

Enacted by Chapter 45, 2013 General Session


The legislation that started it all: http://le.utah.gov/~2013/bills/hbillenr/HB0081.pdf
The following link is a story done while the bill was in the process of being passed - and talks about the personal investment  of Utah's State Legislator, Representative Ronda Menlove (R-Garland) had in this public health initiative: http://www.ksl.com/?nid=960&sid=23976970

Link to Utah's health website that has some materials created for this initiative: http://www.health.utah.gov/cshcn/CHSS/CMV.html

Page four of newsletter explains the new initiative

Here are links to some of the stories that ran after Utah's media release went out (this initiative began July 1, 2013):
 

Utah Health Department has done educational pushes/email blasts to: pediatricians, family practice docs, midwives (both certified and lay), OB/GYN, maternal-fetal medicine, neonatologists, child care providers, religious organizations,  etc.   www.MotherToBabyUT.org.
 
(1 1/2 min video) recently filmed at Utah's University Health Sciences Center by stopcmv.org.  It features Utah families that have been affected by congenital CMV.
 
For more information:
 
Stephanie Browning McVicar, Au.D., CCC-A
DOCTOR OF AUDIOLOGY
Specialty Services Program Manager
State EHDI Director
State of Utah Department of Health,
Children with Special Healthcare Needs,
Children's Hearing and Speech Services
(801) 584-8218
smcvicar@utah.gov

Congenital CMV Resources:
 
Congenital Cytomegalovirus Foundation—The mission of the Congenital CMV Foundation is to prevent birth defects resulting from congenital CMV infection. To contact leading congenital CMV experts, visit: http://www.congenitalcmv.org/foundation.htm
 
The National Congenital CMV Registry: The National Congenital CMV Disease Registry and Research Program in Houston, Texas, includes members from many disciplines and specialties who conduct clinical and laboratory research studies on congenital CMV disease, including ways to better define and promote awareness of the public health problem, the long term effects, and the treatment and prevention of congenital CMV disease. Visit them at: www.bcm.edu/pedi/infect/cmv
 
Stop CMV - The CMV Action Network:
The mission of Stop CMV - The CMV Action Network is to prevent and eliminate congenital CMV and to improve the lives of all people affected by congenital CMV. Since 2003, Stop CMV has been fostering congenital CMV awareness via internet and public awareness campaigns. The CMV Action Network is comprised of families, friends and medical professionals personally affected by CMV and committed to public education efforts to prevent future cases of the virus. Visit: StopCMV.org
 
Brendan B. McGinnis Congenital CMV Foundation—The non-profit organization is dedicated to raising awareness of CMV, to supporting CMV vaccine research, and to supporting families affected by CMV around the world. Visit: cmvfoundation.org
 
Congenital CMV Blog: http://congenitalcmv.blogspot.com
The author of this blog, Lisa Saunders, maintains a congenital CMV blog and links to parent and media resources. Lisa’s daughter Elizabeth was born severely affected by congenital CMV and died at the age of 16. Lisa is the author of the memoir, Anything But a Dog! The perfect pet for a girl with congenital CMV, which raises funds for congenital CMV research of purchased through http://www.unlimitedpublishing.com/cmv/,and is available for speaking engagements. Contact her for her availability at saundersbooks@aol.com

I most recently spoke at the Infection Control Nurses of CT. If you are interested in hearing how that went, you can contact:
 

Kristin Magnussen MSN, RN
Supervisor, Communicable Disease Prevention
Emergency Preparedness Planner
MRC Unit Director
p. 860.448.4882 ext. 331
f. 860.448.4885

Tuesday, July 9, 2013

Utah has become the first state to launch an education and screening campaign for CMV


See the following article by Mark Green, mark.green@fox13now.com :

http://fox13now.com/2013/07/07/utah-takes-action-against-virus-that-harms-unborn-children/
"Legislation was passed in Utah, and now The Utah Department of Health is required to educate women about the dangers of CMV in pregnancy as well as ways to prevent it."

Here is the Utah's Department of Health link that provides the following resources and info:

http://www.health.utah.gov/cshcn/CHSS/CMV.html


Children's Hearing and Speech Services

Cytomegalovirus (CMV) Public Health Initiative
H.B. 81 (2013 General Session) UCA 26-10-10, whose Chief Sponsor was Representative Ronda Rudd Menlove, will go into effect on July 1, 2013. This law (Cytomegalovirus Public Education and Testing) directs the Utah Department of Health to create a public education program to inform pregnant women and women who may become pregnant about the occurrence of CMV, the transmission of CMV, the birth defects that CMV can cause, methods of diagnosis, and available preventative measures. This law also directs medical practitioners to test infants, who fail two newborn hearing screening tests, for congenital CMV and inform the parents of those infants about the possible birth defects that CMV can cause and the available treatment methods.
CMV infection during pregnancy can harm your baby. Cytomegalovirus (sy toe MEG a low vy rus), or CMV, is a common virus that infects people of all ages. Most CMV infections are "silent", meaning the majority of people who are infected with CMV have no signs or symptoms, and there are no harmful effects. However, when CMV oDaisy4.jpegccurs during a woman’s pregnancy, the baby can become infected before birth.  CMV infection before birth is known as “congenital CMV”.  When this happens, the virus gets transmitted to the unborn infant and can potentially damage the brain, eyes and/or inner ears.
About 1 of every 5 children born with congenital CMV infection will develop permanent problems, such as hearing loss or developmental disabilities.
Congenital CMV is the leading non-genetic cause of childhood hearing loss.
CMV Core Facts
Congenital CMV and Hearing Loss
CMV What Women NEED TO KNOW
CMV What Childcare Providers NEED TO KNOW
CMV Utah Flyer
For Health Care and Newborn Hearing Screening Providers:
For more information, contact the Utah Department of Health Early Hearing Detection and Intervention program at (801) 584-8215 or smcvicar@utah.gov.
Page last updated 07/03/2013 14:57:02


HERE is what the bill looks like when I click into the link above:
http://le.utah.gov/code/TITLE26/htm/26_10_001000.htm

Utah Health Code
Family Health Services
Section 10
Cytomegalovirus (CMV) public education and testing.
         
26-10-10.   Cytomegalovirus (CMV) public education and testing.

            (1) As used in this section "CMV" means cytomegalovirus.
            (2) The department shall establish and conduct a public education program to inform pregnant women and women who may become pregnant regarding:
            (a) the incidence of CMV;
            (b) the transmission of CMV to pregnant women and women who may become pregnant;
            (c) birth defects caused by congenital CMV;
            (d) methods of diagnosing congenital CMV; and
            (e) available preventative measures.
            (2) The department shall provide the information described in Subsection (2) to:
            (a) child care programs licensed under Title 26, Chapter 39, Utah Child Care Licensing Act, and their employees;
            (b) a person described in Subsection 26-39-403(1) (c), (f), (g), (h), (j), or (k);
            (c) a person serving as a school nurse under Subsection 53A-11-204;
            (d) a person offering health education in a school district;
            (e) health care providers offering care to pregnant women and infants; and
            (f) religious, ecclesiastical, or denominational organizations offering children's programs as a part of worship services.
            (3) If a newborn infant fails the newborn hearing screening test(s) under Subsection 26-10-6(1), a medical practitioner shall:
            (a) test the newborn infant for CMV before the newborn is 21 days of age, unless a parent of the newborn infant objects; and
            (b) provide to the parents of the newborn infant information regarding:
            (i) birth defects caused by congenital CMV; and
            (ii) available methods of treatment.
            (4) The department shall provide to the family and the medical practitioner, if known, information regarding the testing requirements under Subsection (3) when providing results indicating that an infant has failed the newborn hearing screening test(s) under Subsection 26-10-6(1).
            (5) The department may make rules in accordance with Title 63G, Chapter 3, Utah Administrative Rulemaking Act, as necessary to administer the provisions of this section.

Enacted by Chapter 45, 2013 General Session

Note from Lisa Saunders

To anyone who will listen:
 I am a mother who lost her daughter due to complications from congenital CMV (she died during a seizure at the age of 16 in 2006). I am the parent representative of the Congenital CMV Foundation and author of the memoir, "Anything But a Dog! The perfect pet for a girl with congenital CMV." I want to thank anyone who publishes life-saving information about protecting babies from congenital CMV. My daughter Elizabeth was born severely disabled from congenital CMV because no one told me I shouldn't kiss my own toddler around the mouth (toddlers are the majority of the carriers of CMV) or that I was putting my pregnancy at risk by operating a daycare center in my home for toddlers. If interested, here is my congenital CMV blog: http://congenitalcmv.blogspot.com/

Friday, May 31, 2013

June: National Congenital Cytomegalovirus Awareness Month--Stop #1 Viral Cause of Birth Defects!

According to the Centers for Disease Control and Prevention, June is National Congenital Cytomegalovirus Awareness Month.

Doctors do not routinely warn women of childbearing years how to prevent contracting this virus that causes more disabilities than Down syndrome. This message should be, but is not, as well-known as  "don't change kitty litter when you are pregnant." Probably because no one really wants to hear that they shouldn't kiss a toddler around the mouth or share cookies with them.

Much of my writing work since the death of my daughter Elizabeth (see her headstone) has centered around trying to raise a prevention message about congenital CMV (cytomegalovirus). It is the disease that disabled and ultimately killed her (she died during a seizure).

If interested in helping raise awareness of congenital CMV and/or encouraging women to participate in an ongoing, national treatment trial,* see below, or I would be happy to speak to you.

I try to broadcast a congenital CMV prevention message through my speaking and writing. I hope to reach my goals as the parent representative of the Congenital CMV Foundation, a local TV co-host, speaking at international congenital CMV conferences (2008, 2012) co-sponsored by the CDC, and most recently, I spoke at a conference sponsored by the Infection Control Nurses of Connecticut (April '13). My books, including my humorous and historical travel memoir, Mystic Seafarer's Trail, reveal my desire to become thin and famous like Amelia Earhart so people will listen to my CMV prevention message; and Anything But a Dog! The perfect pet for a girl with congenital CMV, about my disabled daughter growing up beside her tomboy sister and a lazy, old devoted canine (it includes interviews with the country's leading congenital CMV experts and raises funds for CMV research if purchased through the National Congenital CMV Disease Registry and Research Program). In an effort to share the comfort I received from my father's fairytale after my daughter died, I published Surviving Loss: The Woodcutter's Tale, which includes comments on grieving from a Mystic based licensed clinical social worker(it's available as a free e-book at Smashwords). 

Thank you for reading this and spreading the news about CMV prevention. If you would like to speak to me personally about this disease, I will be autographing my book,
Mystic Seafarer's Trail, at Bartleby's Café in downtown Mystic on Saturday, June 1, 9 am - Noon.

Sincerely,
Lisa Saunders
Mystic, CT 06355
saundersbooks@aol.com
Lisa's congenital CMV blog:
http://congenitalcmv.blogspot.com/"

*If interested in the national treatment trial, please contact: Brenna Anderson, M.D., M.Sc., Women & Infants Hospital of RI, banderson@wihri.org, 401-274-1122 ext. 7456. See the following recent news clip that highlights another child disabled by congenital CMV, the ongoing national clinical trial seeking the benefits of a particular treatment, and another mother's work to raise awareness: Clinical trial puts congenital CMV in spotlight for pregnant women ...

 
 
 


Tuesday, April 30, 2013

Media: Please help stop #1 Birth Defects Virus--Congenital CMV (cytomegalovirus)


Dear Reporters/Newcasters,
 
Much of my writing work since the death of my daughter (pictured on left) has centered around trying to raise a prevention message about congenital CMV (cytomegalovirus). It is the disease that disabled and ultimately killed my daughter (she died during a seizure). It causes more disabilities than Down syndrome, yet very few women of child-bearing age have heard about it or know how to prevent it.
If interested in helping raise awareness of congenital CMV (and/or encouraging women to participate in an ongoing, national treatment trial,* I would be happy to speak to you. The following is my short bio, which  includes my work to broadcast a congenital CMV message through speaking and writing:
Lisa Saunders lives in Mystic, Connecticut, with her husband and beagle/basset hound. A local TV co-host, she is the parent representative of the Congenital CMV Foundation and speaks at the international congenital CMV conferences (2008, 2012) co-sponsored by the Centers for Disease Control and Prevention (CDC). Most recently, she spoke at a conference sponsored by the Infection Control Nurses of Connecticut (April '13). Lisa is a part-time history interpreter at Mystic Seaport, a Cornell University graduate, and the author of several books, including her humorous and historical travel memoir, Mystic Seafarer's Trail, where she reveals her desire to become thin and famous like Amelia Earhart so people will listen to her CMV prevention message; and Anything But a Dog! The perfect pet for a girl with congenital CMV, about her disabled daughter growing up beside her tomboy sister and a lazy, old devoted canine (it includes interviews with the country's leading congenital CMV experts and raises funds for CMV research if purchased through the National Congenital CMV Disease Registry and Research Program). In an effort to share the comfort she received from her father's fairytale after her daughter died, she published Surviving Loss: The Woodcutter's Tale, which includes comments on grieving from a Mystic based licensed clinical social worker (it's available as a free e-book at Smashwords). Her other books include the Civil War book and play, Ever True: A Union Private and His Wife, and her children's novel, Ride a Horse Not an Elevator.
Lisa maintains the congenital CMV blog at: http://congenitalcmv.blogspot.com/
A recent newsclip highlights another child disabled by congenital CMV, the ongoing national clinical trial seeking the benefits of a particular treatment, and another mother's work to raise awareness:
Clinical trial puts congenital CMV in spotlight for pregnant women ...

*If interested in highlighting the national treatment trial, please contact: Brenna Anderson, M.D., M.Sc., Women & Infants Hospital of RI, banderson@wihri.org, 401-274-1122 ext. 7456
 
Thank you for your time.

Sincerely,
Lisa Saunders
Mystic, CT 06355