Brendan B. McGinnis Congenital CMV Foundation

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 The
Brendan B. McGinnis Congenital CMV Foundation is a non-profit 501 (c) (3) dedicated to for CMV,
and to affect change in the medical community so that physicians will begin to test women raising
public awareness about congenital CMV, to raise donations to support research for a vaccine 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.

In Loving Memory of...

I was about 25 weeks pregnant when our baby decided to let us know if we were having a boy or
girl. I was all smiles, till the Dr. walked in and we were told there were abnormalities with our baby.
Two days before Christmas. She was small in size & her nerves were not connecting
to either hemispheres of the brain. They weren't there.
We were given the option to abort, and I simply stated thats not even an option.

Mackenzie was born at 34 weeks gestation. By emergency C-Section. Even though she was 5 weeks
early and born at 2lbs 12oz she didn't need a breathing tube! She was kicking and screaming just
like every other newborn. She was perfect!!! After she was born, Dr.s ran all kinds of labs & finally
came to the conclusion that my daughter had CMV. MRI's showed that she had her brain stem and
a very small piece of the cerebellum. Which is why she was able to survive. Treated with
Gangcyclovir for a few weeks, then showed she was able to handle things on her own,
they stopped treatment. She started eating by bottle 2-3 times a day.
Once she hit 4 lbs and eating when she wanted we finally went home.

April 22,2011 we went home! Home in time for her first Easter! Dressed her in a pretty pink dress
with bow. She was in constant pain due to the Hydrocephalus (Fluid in place of brain matter). We
thought she was Colic but No, it was pain. She was very sensitive to sounds. Took her to see a
Neurological Surgeon and when she walked in she immediately scheduled surgery for July 5th.
They placed a shunt in her head. Juy 18th 2011 they placed a G-Tube in her belly since she
had a history of not eating enough. Went home few days later.

Few weeks later we had to go back for more surgery. Shunt clogged due to her fluids being so thick
with protein. In total Mackenzie had 4 surgeries for shunts, and 1 for Gtube. Mid August, I was called
to a meeting with her Dr.'s. They had told me there was nothing more that could have been done
for our baby. I cried, and cried, and cried. Her father and I knew this was going to happen but
hoped not this soon. We decided to take her home on Hospice Care. We didnt want to keep
her in a hospital setting. But did have her Baptized before we left.

Mackenzie was a beautiful little girl. Her eyes said it all. Soft skin, hated baths! Loved to cuddle with
her daddy. They would fall asleep together all the time. She has a wonderful big brother! Whom
absolutely ADORED her. Whenever she cried he was there with the binky. Blonde hair and Im
thinking she was going to have Blue eyes. Funny personality even though she never smiled. I knew
when she was happy. She was behind in milestones, but at 5 months she was getting
so good at holding her head up. Hands to her mouth. Just perfect in every way.

We were at home with Mackenzie. Hospice nurses there round the clock. They were amazing just
loved them! We stopped her feeds on the 1st of October. She could no longer handle food. A sign
of her little body shutting down. Her dad went to bed for work the next morning and I stayed up.
I had this feeling she wasnt going to make it through the night. I held her all night. Her muscle
strength was gone. She was medicated with Morphine, Trileptol, Adevan, and a few other
medications. She was sleeping on my chest and she started to feel cold. I had the nurse
check her and she immediately woke her father up. Mackenzie's heart was slowing down.

We pronounced her on 10.04.2011 at 4:41am. I hugged her and cried so hard, telling her I was so
sorry that I got her sick (even though I didn't know I carried it). 45 minutes later her color changed
and the nurse found a heart beat!!!!! Said I must have revived her, from squeezing her.
Well she just wasn't ready to go yet. I was in shock. She came back to tell me that it was ok and
everything will be ok. Our daughter finally passed away at 7:20am.

Even though she is no longer with us. I am still a mother of two and will continue to tell her story.
We miss her terribly!
It's not fair that she had to be taken due to this virus.
We love you Mackenzie!
Rest In Peace Love bug!!

Submitted by her mom, Tara

Mackenzie
March 20, 2011 - October 4, 2011