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My son Brendan is currently 5 years old (born in 2004). The first sign of something being “wrong” was before
leaving the hospital. He failed the newborn hearing screening in his right ear. They re-tested a week later and he
failed again. He then was referred for a more extensive test. This later test showed total hearing loss in the one ear.
It was neurological. Then, at his 2 week check up, the pediatrician mentioned Brendan’s head size was very small,
or microcephalic. I never realized this fact. No one ever mentioned it to me. The pediatrician discussed four
possible conditions that can produce both hearing loss and microcephaly. One of them was Congenital CMV
disease, which I had never heard of. After two blood tests and a urine culture test, at a mere 3 ½ weeks old, my son
was diagnosed with Congenital CMV disease. I was literally sick for days. Talk from the pediatrician of mental
retardation, seizures, blindness, cerebral palsy, deafness…it devastated me.

What has occurred in the months turned years since then are a number of tests and procedures, including a CT
scan and later an MRI, both of which show Brendan’s brain indeed incurred severe injury from this potentially
devastating virus. He has calcifications, a portion of his left brain did not develop, microcephaly, and slightly
widened ventricles. He sees a number of specialists to monitor his condition: a pediatric Ophthalmologist to check
his retinas (so far they are perfectly healthy); an ENT to keep a close eye on his one hearing ear as it must be
vigilantly protected against any infection (he now has tubes in his ears as a result of continuous infections last
winter); a pediatric Neurologist (as all his issues center around the damage to his brain. Most recently, he has
developed seizures at age 3 ½ for which he is now on medication); a pediatric Gastroenterologist (acid reflux is
common with CMV. Brendan has acid reflux and chronic constipation, both require medicine daily); a pediatric
dentist every 6 months because the CMV damaged the enamel on his teeth (he’s already had two root canals and 4
crowns at age 2); an Audiologist to continue testing the hearing in his left ear (there is a 10 to 15 % chance he could
lose hearing in this ear as well, as hearing loss from CMV can be progressive); an Orthopedic physician who
monitors his muscle and bone issues (his thigh bones were being pulled out of the hip sockets due to the
tightness in his legs from his spastic cerebral palsy. He has had surgery to release those tendons, but it wasn’t
enough. He now has had major bilateral hip surgery to correct his femur positioning); an Endocrinologist (his bone
age is slightly advanced for his age, so his hormone levels are monitored. He also has premature adrenarche); a
dietitian to monitor his weight gain (he does not eat all he needs and had a g-button feeding tube surgically placed
in his stomach to supplement what he takes orally); and, a Metabolic physician who monitors bone density issues
(he was recently diagnosed with osteoporosis and will begin IV treatments for that issue).

Brendan is severely physically disabled. He cannot hold his head upright for more than 2 minutes. He cannot crawl,
cannot sit up, and cannot walk. He cannot speak any words (although he is attempting them recently), cannot hold
his own bottle or even scratch an itch. He has trouble reaching for objects, grabbing objects, and opening his
hands. He cannot rub his eyes like most children when tired. He has trouble sleeping (common for kids with
congenital CMV) and is on melatonin every night. He receives physical and occupational therapy 2 to 3 times a
week, and speech and feeding therapies once a week. As far as mental retardation, it is too difficult to determine
severity. He is so limited physically it is hard to tell. It is very clear that he understands much more than he can
verbally express because he does respond appropriately to what I say to him, like in asking him to reach up for me
he will try, after a long delay, to move his arms up. He will give a kiss to me if I ask him to, is another example.

Brendan is an extremely happy little boy who loves to play, laugh, be tickled and interact with those around him. He
enjoys learning and working on a special computer at his preschool. He loves to be outdoors and is especially
fascinated with trees, even when we are in the car driving down the road! He loves to look at books, listen to music,
and Finding Nemo is his favorite movie. Brendan is a fabulous child who gives joy to anyone who knows him. He is
extremely bright-eyed and pays close attention to all that is happening wherever he may be. He is extremely
affectionate, giving kisses freely and often! Brendan became a big brother in 2008 and he absolutely adores his
little brother!! He enjoys having his brother, Declan, next to him on the floor or placed on his lap. They smile, laugh
and touch each other sharing great love! No matter what abilities or disabilities Brendan has, he truly brings the
deepest of joys to my life! He is an absolute Blessing and I could not be more proud of him nor could I love him any
deeper than I already do!

The Brendan B. McGinnis Congenital CMV Foundation is a non-profit 501 (c) (3) dedicated
to raising public awareness about congenital CMV, to raise donations to support research
for a vaccine for CMV, and to affect change in the medical community so that physicians
will begin to test women for CMV prior to pregnancy. Ultimately, our mission is to save
babies yet to be born from suffering the often devastating consequences of congenital
CMV by eradicating this common but potentially life-altering virus.

Brendan B. McGinnis
Congenital CMV Foundation

If you are considering having a baby,
you need to know about congenital
cytomegalovirus (CMV) infection !

About Brendan by Tracy McGinnis, his mommy

Public Awareness and Vaccine Research Support. Working Together to Eradicate Congenital CMV Disease.

Member of the External Partner Group, in conjunction with the National Center on Birth Defects and
Developmental Disabilities (NCBDDD) and the Centers for Disease Control and Prevention (CDC)