Brendan B. McGinnis Congenital CMV Foundation Brendan's Story

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)

Brendan B. McGinnis Congenital CMV Foundation |

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.

My son Brendan is currently 7 years old (born in 2004). When he was born, he scored a "9" on both his one and
five minute apgars. He was perfectly healthy! "Finally", friends and family said "your luck has changed!" They were
referring to the 4 miscarriages I had suffered prior to Brendan being born. And as I held my newborn baby, the
picture of perfect health, I knew that my life had changed forever...and surely, my luck had indeed changed. I
was overjoyed, amazed, in disbelief that there he was, my son, and it was real...I wasn't dreaming

The first sign of something being “wrong” was before leaving the hospital. He failed the newborn hearing
screening in his right ear. The nurses assured me it was water in his ear, so not to worry. They re-tested a week
later and he failed again. Then the worry began. He then was referred for a more extensive test. This later test
showed total hearing loss in the one ear. It was "neurological" I was told. I remember getting in my car, leaving
the hospital after that first ABR test, crying over how my son was deaf in one ear. I had no idea, of course, what
was about to unfold in the next two weeks.

At his regular newborn two week old check up, the pediatrician mentioned Brendan’s head size was very small, or
microcephalic. I never realized this fact; no one had mentioned it to me until then. Nor had I ever heard the word
microcephaly until then. 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 either. I was sure that it
was toxoplasmosis. I mean, after all, I was warned not to change my cat's litter box, and I had done it, so that
had to be what Brendan was suffering from, what had caused the damage to his brain. I researched about it
online, as well as this "CMV" thing, deciding since it was so rare, that couldn't be it. Who had ever heard of CMV,
right?

After two blood tests and a urine culture test, at a mere 4 weeks old, my son was diagnosed with Congenital
CMV disease. I was literally sick for days. I will never forget that evening, sitting in my apartment alone with my
newborn in my arms, talking to the pediatrician on the phone as he fingered through a medical book, reading to
me about congenital CMV. 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, procedures, and surgeries,
including a CT scan and later an MRI, both of which show Brendan’s brain indeed incurred severe injury from this
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; a pediatric Neurologist (as all his issues center around the damage to his
brain). He developed seizures at age 3 ½, which have steadily increased in frequency and severity. As such, his
medications continue to increase as well; 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 is most often 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 has
subsequently had to have 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 no longer takes food orally, and he has a g-button feeding tube surgically
placed in his stomach); a physiatrist (with botox and serial casting done on both legs); and, a Metabolic physician
who monitors bone density issues (he was diagnosed with osteoporosis).

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. He cannot hold a 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, although recently his sleep issue is lessening because the high
amount of seizure medication he is on makes him so tired. He receives physical, speech and occupational therapies
4 times a week. As far as intellectual disability, it is too difficult to determine severity. He is so limited physically it is
hard to measure, although it is clear he is intellectually impaired. It is also 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. I will never underestimate what he understands.

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 school. 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 and loves to be held and cuddled! He is an angel, simply put.

Brendan became a big brother in 2008 and he absolutely adores his little brother!! He enjoys having his brother,
Declan, next to him playing, handing him toys, and giving him big hugs and lots of kisses! 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! He is my angel....

Brendan's Story