Politics

Ugh. I hate them.

Several states have now passed CMV legislation. Utah, Tennessee, Illinois, Texas, and Hawaii, I believe. The legislation allows for increased public awareness of CMV, education of physicians about CMV, and requires doctors to provide information to pregnant women about CMV. If you've been to Salt Lake City in the last couple of years, you may have noticed busses downtown plastered with CMV posters.

If this type of information had been available to me 5 years ago, our lives may be very different today. And I believe that it may only take a few passionate parents to get some similar legislation passed in Idaho. I really think it's something I could do.

However, there are many things I need to be doing with my time and I had kind of given myself a pass, to put this particular goal off until...I don't know. Later. But for better or for worse, a couple of months ago, I was contacted by a fellow CMV mommy who lives in northern Idaho. SHE has it in her to push forward on this NOW. So, I informed her of my limitations and I'm letting her take the lead, but I am now taking baby steps forward toward this big goal of CMV legislation in Idaho.

My partner in crime requested that I write up a one page testimony about life with Keira. I put it off for a long time. It was harder to write than I thought. But here it is. My first writing for the purpose of twisting the arms of the powers that be, to educate and inform all the pregnant women of the future in Idaho. Wish us luck.

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To Whom It May Concern:

I’d like to tell you about my daughter, Keira. She is a four-year-old girl with an effervescent laugh and eyes that sparkle and light up a room. She is also the biggest challenge I’ve faced in my life. The condition she has is preventable and I am passionate about the fact that every pregnant woman in Idaho should be aware of it. My daughter was born with cytomegalovirus* (CMV). Harmless to most, CMV is a common virus that infects 80% of us by the time we reach adulthood. However, it can have devastating effects when transmitted to a fetus by a pregnant mother.

When I was pregnant with Keira in 2012, my OB/GYN repeatedly told me that my pregnancy was “boringly healthy.” Yet my baby was born with tremendous challenges. Born at 37 weeks, she was technically full term, but she weighed only 4 lbs., 13 oz. She also had microcephaly, an enlarged liver and spleen, petichiae on her skin, and cysts on her brain; all symptoms, I would soon learn from specialists, which were characteristic of CMV.

At my 6 week, postnatal follow up appointment, my OB/GYN attested that CMV had hardly been covered in medical school and after over a decade of practicing obstetrics, he believed Keira to be the first time he had encountered CMV. Unfortunately, my OB/GYN was not alone in believing that CMV was rare. I have since learned that only 13% of women have ever heard of CMV and fewer than half of all OB/GYNs are educating their patients about CMV.

Keira has cerebral palsy, vision impairment, and failure to thrive. She will never walk or talk. She receives her nutrition entirely by G-tube. At age 4, she cannot hold up her own head. She is at high risk for hearing loss and seizures. It is very unlikely that she will outlive her parents or her brothers.

Since her birth, Keira has undergone 14 surgical procedures and spent 100 days in the hospital. She is followed by 16 medical specialists and 7 types of therapists. She takes 7 medications on an ongoing basis. She averages 6 appointments per week, not including school. To date, Medicaid has paid out $278,303.47 on Keira’s behalf.

Here is what I wish I had been told and the information that I believe all women of childbearing age should have access to:

-1 in 150 children is born with CMV

-CMV is more common that HIV, Spina Bifeda, and Downs Syndrome

-1 in 5 babies born with CMV will be permanently disabled by it

-CMV can be prevented using specific hygienic precautions

-Testing for CMV before and/or during pregnancy can aid in prevention and treatment

-Vancyclovir and Immune Globulin Injections may help treat CMV during pregnancy

I had never heard of CMV until it was too late for my daughter. If my OB/GYN and I had been aware, we may have been able to prevent it and/or mediate its devastating effect on my daughter.

It’s unconscionable to continue to keep this information from pregnant women. In the U.S., typical prenatal care routinely screens for a numerous conditions (including HIV, cystic fibrosis, and toxoplasmosis) that are far less common, less devastating, and/or less burdensome on society than CMV.  CMV needs to be added to the list of conditions that are screened and followed by physicians.

It has been estimated that educating the public in our state would cost $40,000 the first year and $26,000 annually after that. Several states (including Utah, Texas, and Tennessee) have already begun to implement CMV legislation. I pray that Idaho will soon follow*.

Thank you for taking the time to read our story. Do not hesitate to contact me if you have additional questions.

Sincerely,

  

Rebekah Ponsford-Hall, PsyD

CMV Mom

* For more information about CMV, visit nationalcmv.org or the Center for Disease Control website

* To review the CMV bill passed in 2013 by the state of Utah, visit le.utah.gov//~2013/bills/static/hb0081