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The Gregory-Arritola Family

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Trisomy 13 - A Prenatal Diagnosis: What to do now???

GESTATIONAL (15-38 weeks)

PHASE 1 – The Discovery Phase


We learned at 15 weeks gestation through a level II ultrasound (after a low AFP test) that our little one was a boy and that he had calcium deposits on his heart, cysts on his kidneys, fluid in his brain ... and what looked like a sixth digit.  My husband was like, "What do you mean you THINK he has a sixth digit?" 

 

In the sea of emotions, we knew we didn’t want an amniocentesis.  Most of these tests are used to determine to abort.  Instead, we decided to get an amniocentesis to see what we were up against and allow ourselves and our family to prepare for this as much as possible.  

 

It was about 4:00 in the afternoon on Valentines Day when we recived “the call” on our Amnio results.  After learning the news,  the love of my life and I had to escape to go cry together ... but we just weren’t ready to talk about it with others... we had to make sense of it first ... shoot we didn’t even really know what it meant except that the doctor told us on the phone that Trisomy 13 (Very similar to T18) "is one of the two worst chromosomal disorders that can go to full term without spontaneously miscarrying and that this is incompatable with life".  WHOA - those words still sound wrong to me and guess what?  THEY ARE WRONG – read on to see why Anthony is testimony to his medical community as to what to expect from this syndrome.

 

They (our first geneticist/neonatologist) told me he would never suck, get hungry or want to eat.  They told me most all of these children never live more than an hour or two if they survive birth and none who have survived have been known to ever talk, walk or have mental competency.  We were devastated and mourned the loss of our sons' future and the loss of our expectations for our family. 

 

It took about one month for me to find other families in similar crisis and to realized that what the doctors had told me were worse case scenarios based on children who remained sick or were not given Oxygen when blue, or were abondoned to suffer their ailments without any intervention or help.  I stumbled upon several other families who quietly were leading much better lives than what the doctors had first described.  We found children who were talking, eating, walking, going to school, graduating, working, etc.  Although some have differing limitations, they are surviving the odds with support from their family to live a normal as life as possible given their situations. 

 

It took two months to be able to prepare and share our negative prenatal diagnosis with our other three boys.  It took us another month and a half beyond that to finally get all our doctors on the same page and minimize the "world against us issues" they had with supporting our decision.  We had to be very clear with our doctors about our goal to bring Anthony home.  Our fight to be understood led to our birth plan or plan of care for Anthony. 

 

PHASE 2 – The Information Phase

 

Most of what we were told initially by our doctors was confirmed by our research on the Internet and from the Library.  This part of our journey was a very dark time for us and we learned more dreadful stories of what to expect.  We retreated from the world to prayer and tears and more discovery research.  We fought off an overbearing anxiety moment by moment and instead of being filled with much wanted peace, numbness was the only consolation during the first days of discovery.  In short, we were devastated and we were mourning the loss of our sons' future and the loss of our expectations for our family. 

 

We went to the Internet to try to find out as much as possible.  After initially exhausting the general search results for Trisomy 13 on the Internet, I began looking for info on survivors, coping and moving on in the face of adversity.  This is where the doom and gloom from all we had heard and read began to melt away. 

 

Fortunately, I found another mom who had a 5 year old survivor and she contacted me and we had a long discussion.  I just wanted to know what to expect.  It was SO different from what we were told and what was on the Internet.  Talking to her was so much a blessing which is why I offer my support now too. 

 

I didn’t realize I had so many questions until I got off the phone with this person who was living this daily life.  Speaking with her allowed me the courage and permission to allow myself to think about scarier questions that I was trying not to allow to bubble up in my  mind:

How can I do this?  Where is my strength?

Am I the only one who feels like this?

What do I do?

How do I explain this to my family?

How will I deal with my family members (relatives) comments?

Why doesn't anyone else want to help?

Is this a death sentence, will our Insurance cover this?

Can I get life insurance on my child with this diagnosis?

How can we afford this financially?

How will we manage Hospice, Nursing Care, and do we need it?

Will we need to make funeral arrangements? 

Will our son even survive to come to his home? 

How can I handle my emotions and where do I turn?

What must I do to ensure conformity to Gods will?

How do I protect my own emotions - I feel so vulnerable!

How can I do this ?  How can we do this?  How will we get through this?

 

We were able to face our anxieties one by one and what we found out was quite relieving and so much of the stressors dissipated.   

 

This is the part of our journey that led us to TAKE ACTION in Discovering more information SPECIFICALLY related to our situation, and not just on what was told to us.

 

If you have a prenatal diagnosis with Trisomy 13, you are not alone.  I know of many parents who are willing to talk to you, answer your questions or just listen ... YOU ARE NOT ALONE

 

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