Anthony (4 months old) and Family

Our son Anthony Emmanuel Arritola was diagnosed with a condition in which every cell in his body has an extra 13th chromosome in his DNA which continues to replicate with each new cell. From what we understand, the 13th chromosome is responsible for the development of the body's major organs. Sadly, the medical community has labeled this syndrome as "Incompatible with Life" meaning infants are incapable of surviving outside of the womb. For those that do survive, they are labeled "Failure to Thrive" meaning these children are incapable of growing and surviving to any development milestone.

We learned at 15 weeks gestation that our little boy had calcium deposits on his heart, cysts on his kidneys, fluid in his brain ... and what looked like a sixth digit.

I still remember when we got “the call” confirming the findings. The doctor told us on the phone that this was “worse than he expected”. ( and I quote) “This is one of the two worst chromosomal disorders that can go to full term without spontaneously miscarrying”. “This is incompatible with life". He scheduled us to meet with a geneticist to answer our questions. My husband looked as if he fell two stories through the floor; he began to hold back huge tears which broke like a flood gate as soon as the phone hung up. “We have an obligation to baptize him”, I whispered quietly to myself. Rick was lost, distant for a while. And I was numb.

The geneticist reiterated what we had already learned from the Internet. This is a genetic condition that is not hereditary but rather a rare glitch occurring at the time of meiosis cell division. If our infant son did make it to full term, he had a 60% chance of stillbirth and an 80% chance of death before his first 30 days. Most babies live an average of 8.5 days. Survival to the first birthday is less than 7%.

Anthony was born with a smile that will brighten even the darkest of souls and every now and then he gives a look of wisdom in his face that makes even a skeptic ponder. He is unconventional and will not fit into any “textbook” stereotype. He is Anthony. And we love him just the way God made him. In Gods eyes, he is complete.

The next few months after his birth and discharge, we felt informed, overwhelmed, out of control of his situation and so much just humbled that all we needed to do was love … nothing more and nothing less. Ironically, there was comfort in that we could do nothing. If I could have done something more, I'd have been more hysterical to do it – instead of gaining peace and acceptance.

If you are facing a similar negative prenatal diagnosis with poor anticipated outcome OR if you have received info to terminate your pregnancy because of initial findings ... I offer our journey for you to take a peak into our everyday life and journey by the side of similar emotion: http://gregoryarritola.tripod.com

In our journey I have found very few friends who understand this great cross yet I feel called to reach out to others who are feeling this way too. I have found that a "negative prenatal diagnosis" carries with it a weight that is similar to mourning, yet the mourning never quite comes to a close as lingering fear (from the diagnosis) keeps the emotions strong. On the other hand, we have felt overbearing joy and seen unmistakable miracles in other people's life through our sons' interaction with them. Some of these feelings are hard to cope with at times yet the affirmation that God has a plan cannot be denied as I ponder events that continue to happen. Coincidence? Thankfully, in the face of adversity, God has given us faith, courage and friends.

My hope is that the fear and anxiety the newly diagnosed feel in these situations can be dispelled with sites of survivorship and offer support links to families who have or still are facing early death of their infant children.

In my original search for answers, I felt like there was no one out there who knew what I was feeling and I felt as if the doctors and the whole world were against my inner beliefs. In the end, I knew my child would live a shortened life ... potentially a different life than most ... but our family felt compelled not to choose his last day of life but rather leave that to God.

Today we remain on the roller coaster of love.

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You can read more about Trisomy 13 and receive incredible on-line support through the private message board on www.livingwithtrisomy13.org. 

-The support, information and encouragement provided by the PPFL parents is not meant to take the place of medical advice by a medical professional. Any specific questions about care should be directed to a health care professional familiar with the situation.