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
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
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.
to trisomy 13 Stories
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.