Stop CMV Letter to Parents

March 28, 2009

Dear CMV Parent:

I want to introduce myself. I am the Long Island STOP CMV Representative for STOP CMV - The CMV Action Network. STOP CMV is a grassroots organization with a basic, informative, virtual presence online, working to foster awareness in our communities via 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. It ‘s mission is to educate women, families, and the public about the dangers of congenital CMV by offering information on the virus, as well as information about testing, transmission, and prevention. We also hope to empower women and families already affected by CMV to educate their friends and communities about the risks associated with CMV infection during pregnancy.

I am writing this letter to all those families who have registered on the National Congenital CMV Registry (Parent to Parent Support Network), and live in the tri state area. I wanted to introduce myself, the organization, and get to know other CMV families. I am a psychologist with a private practice in East Norwich, NY. My daughter, Ashley, is a 6 ½ year old first grader. Her younger brother, Noah, is 4 and was born with Congenital CMV. We found out during his routine 20 week sonogram that he had what was called “echogenic bowel” or bright spots on his bowel. This led the obstetrician to run a torch screen on me. I found out that I had been exposed to a primary infection of CMV. Noah was born on the Northern State Parkway, en route to the hospital. He was delivered by his father. At 8lbs he looked like any other healthy little boy. He was tested for CMV because we knew of my exposure. He tested positive, and from there we ran hearing tests, ct scans, mri’s and everything else they needed to. We participated in a study for an oral anti viral medication that was supposed to address the progression of hearing loss, which is a trademark effect of the CMV. Right now, Noah is an active, social, and happy four year old. He attends a special education preschool which he loves and has a moderate to severe hearing loss, microcephaly, right hemiparises, seizure disorders, and global developmental delays.

In November 2008 I went to the National CMV Conference at the Center for Disease Control, in Atlanta, Georgia. It was an overwhelming experience to be surrounded by those physicians who are working on vaccines and treatments. It was an enormous pleasure and privilege to meet for the very first time other mothers, fathers, and grandparents who shared my experience of having and raising a child with CMV. All of our children vary in ages and in the degree that they are affected by this devastating virus. Janelle Greenlee is one such mother. She is the founder of The STOP CMV Action Network. I wanted to become a Stop CMV representative to aid in her efforts to increase awareness and support of others. Tracy McGinnis is another parent. She is the founder the CMV Foundation, a not for profit organization. Tracy has organized a dozen awareness events throughout the country on May 16, 2009. Enclosed you will find information on one that I am hosting in Long Island, NY.

In addition to finding other CMV parents and friends who would like to join my mission to prevent and get the word out about Congenital CMV, I am hoping to connect with others who have a child with CMV. To me connecting with others is priceless. If you can think of anything that the area chapter of the STOP CMV Network could provide please feel free to call or send me an email at Lkelli@aol.com.

Please feel free to visit online http://www.stopcmv.com/ or their discussion boards to connect with others or ask questions. Also feel free to visit online http://www.cmvfoundation.org/ to get more information on the events going on in May. http://congenitalcmv.blogspot.com/ is a blog written and put together by Lisa Saunders, another CMV mom and author of the memoir “Anything But a Dog! The perfect pet for a girl with congenital CMV.”
Sincerely,


Lynn Pickus, Psy. D.

Noah's Story

Spirit and determination are two words that describe Noah. These personality traits have always been evident. Starting with when Noah was born, on 10/11/2004, in the front seat of our car, en route to the hospital. He was delivered by his dad, Robert, with a little help from a 911 operator. On site he looked like any other healthy 8 lb newborn. His pediatrician, after consultation with an infectious disease doctor, decided to test Noah for Congenital CMV immediately after his birth. This decision was made because on Noah's routine 20 week sonogram an "echogenic bowel" (bright spots on his bowel) was seen. The doctor I was seeing that day decided to run a torch screen blood test. This torch screen showed that I had been exposed to a primary infection of the Cytomeglavirus. Congenital CMV causes the most damage to babies whose mothers contract it for the first time while pregnant. I never knew that because I had a toddler in day care, that I was at a greater risk for exposure.

In some ways I was lucky. To this day my regular OB GYN states that he would not have run the blood test to check for a CMV infection that day of my sonogram. Without that blood test, we would not have known that I had been exposed to CMV as a primary infection and we would not have known to run the urine test on Noah when he was born.

That positive result set in motion a string of events and opportunities Noah would not have had, if we had not known he was CMV positive, even later on. We were approached by the pediatric infectious disease team about a new study they were initiating on an oral anti viral medication for Congenital CMV(Vanganciclovir). Noah was one of the first babies nationwide in this study. The purpose of the study was to see if the medication would be effective in reducing the progression of hearing loss, that is a trademark result of the virus.

Noah was moved to the NICU and given a spinal tap to test for CMV, brain scans, MRI's and hearing tests. The tests did reveal a hearing loss, calcifications in his brain, and other brain abnormalities.

We spent the next 3 1/2 weeks trying to spend as much time with Noah in the NICU, without feeling like we were neglecting his big sister at home who did not understand why her new brother was not coming home from the hospital.

We dealt with physicians who had already written him off. Our first neurologist told us, when Noah was just 10 days old, that Noah would never walk, talk, or do anything beyond a newborn level. It is a good thing that Noah was not listening to him.

During the last four years, Noah's schedule has been overloaded with therapies and activities, but as a result, he can walk, learning to run, jump with both feet off the ground (a new accomplishment that he was quite excited about), and his language continues to grow each day. He has struggled with motor issues (Noah has cerebral palsy which effects his right side), hearing loss, feeding disorders, developmental delays, and a seizure disorder. But this in no way describes Noah. Noah has never known the meaning of "can't." His therapists have always stated that his motivation and determination have been integral to his progress.

People can't help but smile at Noah, his energy, excitement, and pure joy for life is absolutely contagious.

There is no reason that this devastating virus should be so unknown. Help me increase awareness and hopefully spare other families and children.