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The Gregory-Arritola Family

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Anthony has been diagnosed with Trisomy 13
a/k/a Patau's Syndrome 

What is Trisomy 13?

anthony8monthsold.jpg

Survivability Statistics for Trisomy 13
     Did you know a T13 baby has
     … up to a 60% chance of stillbirth?
     … about an 82% chance of not surviving his first 30 days and
     ...  has been stated in textbooks as having less than 7% +/- chance of making it to their first birthday? 
 
The median age of a Trisomy 13 child is 8.5 days.  Some documentation states average age at 1.5 days.  Sadly, with these statistics, there are many that do not survivie, but we have one thing in common with all these families, we have all seen the beauty of life in these little ones.  No one child is similar to another and each one is a miracle of his/her own and although the diagnosis appears overwhelming at times, it is just everyday life as usual for us families.  And it is not as tough as it seemed to be at first.  Our days are simply trying and tiresome at times.  But how different is that than raising a teenager these days? 
 
At first glance, this story looks like another doom and gloom site on the Internet about how Trisomy 13 children do not survive.  But actually, this site proves that these little lives, while expectedly shorter than most lives, do thrive full of life, joy, peace and happiness, if just given the opportunity to breathe and be nourished. 

Our son 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.   

 

Anthony 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.  

 

When I 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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I offer any support I am able to give. Life is truly beautiful when its not taken for granted.  I am available via e-mail at JaninaArritola@comcast.net for discussion.

 

We would be honored for visitors to sign our guest book. 
Click here to see more pictures of Anthony.  

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