The Hard Truth

Even though the amniocentesis results were hard to hear, both Jason and Amanda were glad to have a definitive diagnosis at last. Of course, that diagnosis generated even more questions and a flurry of research.  There were some dark days as they adjusted to the heartbreaking realities they were faced with...

May 5, 2013


We have received results back from the amniocentesis.  We were not expecting them this soon.  The news was not what we expected, but also wasn't good.  Our child does not have a trisomy based syndrome such as Edward or Down syndrome whereby one chromosome is duplicated creating three where there should be two for a total of 47.  Instead our boy has what is known as Triploidy which is when all of the baby's chromosomes are duplicated on one side creating three full sets of chromosomes instead of two (69 instead of the usual 46).  This is based on a partial analysis.  The full analysis will take another couple of weeks at which point we will know if it is Triploidy or Mosaic Triploidy which is where there is only part of a third set of chromosomes.

This is very rare and even more rare as most babies with Triploidy end in miscarriage.  The fact that he has made it this far is surprising.  That being said, full Triploidy and life are not possible in coexistence.  The longest recorded life of any child with full Triploidy is ten and a half months.  The oldest living people with Mosaic Triploidy are currently in their twenties and there have only been 50 or so cases in the world.  Children with Mosaic Triploidy that survive are born with a range of mild to severe physical and mental handicaps. 

Now we know what it is we face.  The doctors know and it is documented.  There is no way to wish or argue the situation away or to tell ourselves later that any miracles that we encounter in this situation could have been due to incorrect diagnosis or false information.  It is miracle or bust. 

As said before, we are believing for life for our child.  That means full and unhindered life with a perfect genetic code.  Please continue to pray and believe with us as we work through this.  Please pray for peace, hope, and courage for Amanda and myself as we attempt to continue on with our daily tasks in the face of this situation.

Thanks,
Jason

May 6, 2013

It occurred to me that while a few of you know our little guy's name, most do not.  His name is Colby Rafe Livingston.  As some of you may know, I put a lot of value on the meaning of a name because every time we speak it, we are declaring it over that person.  When you have a revelation of this, it changes the way you look at names.  A great example of this is my daughter, Evaine, whose name means "Life".  Anyone who has met my daughter can testify to the fact that she has become the embodiment of her name.

While Colby does not have much significance in regards to its meaning, the name Rafe means "God has healed" and "Wolf Council/Wolf Shield".  In truth, while we are believing for a miracle and we are holding fast to the promise of victory in his body, only God truly knows how much time we will have with our son.  All that to say, I would like people have the chance to know him by his name and to support him by name.

Again, thank you all so much for your support in this.  It has given me strength beyond my limits and helped me to stand when I have no strength.

Jason