Anthony Emmanuel Arritola was born on July 8, 2005 in Atlanta, GA with full T-13. Full T-13 means that every cell in his body has an extra 13th chromosome
and continues to replicate that DNA structure. From what we understand, the 13th chromosome is responsible for the development
of the body’s major organs. Sadly, due to the low survivability statistics for Trisomy 13 (listed above), the
medical community has labeled this syndrome as "Incompatible with Life" meaning this child is incapable of surviving outside
of the womb. For those that do survive, they are labeled "Failure to Thrive" meaning that these children are incapable
of growing and surviving to any development milestone. This label follows survivors for at least the first year
until the medical community is forced to acknowledge that some of these kids DO survive.
has spent most of his entire life at home living quite well stumping the medical community on his "Failure to Thrive" symptoms
yet surving strongly and without many issues. We would sport around town doing errands and dropping off and picking
up the brothers from school activities and such. Anthony loved to drink from a bottle especially when he was coddled,
loved and rocked. As Anthony grew, his nutritional intake did not increase with his weight and the need for a G-tube
led us to a planned surgery. After this surgery, difficultites not related to the original surgical intervention
caused much suffering for our littlest Anthony. But even in a hospital, Anthony led an exceptional life.
Obstacle after obstacle, Anthony suffered through and prevailed. In some cases, he suffered silently and with a gentle
smile, although we know he didn't feel too good. In the end, Anthony developed Pulmonary Edema and was unable to
absorb Oxygen. His stout heart and human will to survive even pushed these limits. Quite simply, he lived a life
of heroic virtue.
Anthony's smile brightened every
room and even the darkest of souls while the look of wisdom in his face made even the skeptic (medical community) ponder his
thoughts. Anthony sported smiles at familiar voices and talked in coos and sounds.
Before he got weak, somewhere about 8 months old, he was also trying to master rolling over. He constantly was
playing with his fingers and loved to suck his thumb or reach for a familiar family member’s finger.
was first diagnosed prenatal, I was flooded with a sea of emotions and bombarded with “no hope” stories from doctors. We were told that sick infants are typically treated in the NICU but in Anthony's
case, there was no treatment for Trisomy 13. Most likely, when his body began to function on it's own after birth, he
would most likey begin to go through multi-organ failure and die in our arms.
But I was always curious in the back of my mind what to expect if Anthony did beat the 7% odds of
survivability. To our delight, Anthony continued to defy the expectations of the medical community. Don't
get me wrong, he had some challenges, like upper respiratory scares and what not, but he proved he was a fighter
and didn't let any of these obstacles get in the way of living the life he was expected to live!
Anthony's life has always been more than just about him. It's about those who can benefit
from what we learned. So to help others with a similar prenatal diagnosis, I have documented the phases of our
journey for further reference and I make myself available to help any person, family or child, whether close or far, in
any way to prepare for the outcome of a negative prenatal pregnancy, an incompatible with life diagnosis or failure to
thrive issues. We have learned how to have tiered discussions with the medical community
and allow our voice to be understood amongst a majority concensus. We have found our strengths, noted our
weaknesses and learned how to "carry on" in the face of adversity despite the outlook. We have learned how to manage
through a healthcare system that does not recognize what to do in atypical situations and we have many "lessons learned" we
would love to share with parents who have similar struggles.
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