Showing posts with label triploidy. Show all posts
Showing posts with label triploidy. Show all posts

Monday, July 19, 2010

Faces of Loss


Sheyenne W1
 A fellow babyloss mamma (BLM), Kristin (Stevie Joy's mom) has started an incredible project called "Faces of Loss, Faces of Hope: Putting a Face on Miscarriage, Stillbirth and Infant Loss."  It is an incredible idea... every face, every woman, every story represents a precious child who is missing from our lives.  Our stories represent so many things.... pain, loss, sorrow, grief, dreams unrealized, interrupted parenthood, incomplete families, longings for heaven, hope, strength, courage, faith and healing.  HERE is OUR STORY

Talking about grief-- and especially grief as it relates to pregnancy and infant loss is so taboo.  But as the quote on this website says, "Whenever a taboo is broken, something good happens..."  I have yet to meet a fellow BLM who has not been hurt by people in the midst of their grief.  Grieving people hurt, our grief changes us.  Its not always a bad thing in the end, but we are forever different.  And its a process... we probably don't act how you might think we "should."  Grief has a way of leveling the playing field for everyone... it doesn't matter if you're a high-level businesswoman, a kindergarten teacher, a top-selling real estate agent, a pastor's wife or a nurse.  When your child dies, the rules and politics go out the window.  It doesn't matter what anyone else thinks, because your baby is no longer here.  And in the end, you're the only one who will really, truly live that reality. And really, when a baby dies along with all your hopes and dreams for her, is there really a guidebook for how we should act??  I don't think so.  

And that's what is so beautiful about Kristin's new project... I am so glad we could be a part of it and share Whitney's story.  It is a beautiful, freeing and healing thing to know that we are not alone.  Though it often feels like it, especially when our daily surroundings are full of "shoulds" and "shouldn'ts" in our grief...it doesn't matter.  We're not alone.  And these are the faces of hope that help remind me of that...

FACES OF LOSS, FACES OF HOPE.



Thursday, June 24, 2010

Sourpatch Joy

Sourpatch kids A lot of what I’ve been writing lately has been focused on my grief… I was just reading some of the last few posts I’ve written and they’re riddled with sadness and loss.  Though I am missing my baby terribly today, I am in awe of the intense joy that I also feel every single time I think about her.   As I reflect back on our journey thus far, I am so thankful for the joy that permeates through every circumstance.  The day I found out I was pregnant was by far one of the greatest days of my life.  So much joy filled my heart, my mind, our home, and our lives.  Feeling Whitney kick and move for the very first time was another great moment—a moment I would have never experienced had I chosen to terminate when we were told to.  Sean and I had Christmas as a family of 3 for the first time ever.  (Granted, Whitney was in my tummy… but still… there were three beating hearts around our Christmas tree this year (ok, 5 if you count our cats)!)  And another joyous moment… I got to hold my baby—MY baby!  There were times in recent years when I wondered if I would ever get to hold a little one in my arms, searching to see whose smile, whose eyes, whose lips, etc she would have.  And God did give me that opportunity. 


Many babies with Whitney’s condition, triploidy, miscarry in the first few weeks of pregnancy, and almost always within the first trimester.  But one of the verses that I continually prayed was Exodus 23:26… “None will miscarry or be barren in your land.  I will give you a fill life span.”  I read this verse to Sean in the same breath that I told him I was pregnant.  I believe with all my heart that God allowed us to experience the fullness of Whitney’s life during my pregnancy because we prayed this prayer, over and over.  Some say to me now, “How could God allow this?  Aren’t you mad at him because this happened?”  I absolutely see where they’re coming from.  And that’s definitely one way to look at it.  But we’ve chosen to see it from the other side… God is the one who gave us so many blessings, despite the horrible circumstances.  When the odds were that I would have miscarried, God allowed us more time with Whitney.  More time to feel her, to know her, to grow to love her. 


Some people have commented that it would have just been easier if we had miscarried earlier, or chosen to terminate when we were told to.  There were times in the midst of my pregnancy when I thought about that and wondered if it were true.  However, now that I’ve held her, that I was able to actually give birth to her when my body was ready, I completely disagree.  It would have been a million times harder had we not seen her life through to completion in the way we did.  During the pregnancy there were a million unknowns… would there be a heartbeat at my next dr. appt?  What would she look like?  What deformities would she have, if any?  When would I go into labor?  How would it happen?  Would I need surgery?  Will Whitney be born alive?  So many unknowns, at times it was unbearable.  I learned that truly, I am not in control of anything.  A good friend (who also lost her son to triploidy) put it to me this way:  When something terrible like the death (or illness) of a baby happens we have two options—we can either grasp more wildly for control that will never come, or we can completely let go.  By letting go of all control in the situation, there was such a release… a freedom I had not felt thus far in my pregnancy.  I rested a little better knowing that I was not the one making the decisions about my baby’s life and death.  It was ultimately up to God.  I would do all I could to take care of the life He had entrusted to us, for as long as God would allow.  And when the time was right (in Creator of the universe’s timeline, of course), indeed, God did deliver us from all the unknowns.  I think one of the most comforting things for me, personally, was having all those unknowns answered.  I was able to see her (she was beautiful, perfect… no deformities on the outside like the doctors had told us there would be), hold her, and see who this little person was that had forever rocked our world.  We had closure to the months and months of questions.  If we had chosen to end it all when the doctors told us to, all those unknowns would still exist.  No answers.  No closure.  No peace.  I would forever wonder what she looked like, how far she would have made it.  To me, that is one of the biggest blessings that came from all of this.


So even now when I think of our daughter, I am filled with such a strange mix of emotions.  It’s like those Sourpatch Kids candies… they can’t decide if they want to be sweet or sour.  Sometimes they’re sourer than sweet, other times, it’s just the opposite.  Bittersweet.  But I don’t even like that word… it’s just terribly insufficient to express the true depth of such strong emotions.  I do know that when I really dissect the feelings, though, in almost every moment there is deep, permeating, underlying joy that runs through everything.  Sometimes, when things are really tough, joy is too strong of a word—I guess in those moments “peace” is more succinct.  So I hope that even though I have been sharing a lot of my grief as of late, please understand I still wouldn’t take it back for one second.  And I would do it all over again if I had to; just the way we did it the first time.  There is no greater peace than walking through a nightmare, having to make horrific, unthinkable decisions, but emerging in the end knowing that you did everything in alliance with the core of your being.   




Tuesday, December 22, 2009

The answer to the tests...

I am going to attempt to explain in this blog what has been confusing the doctor's since we began.  Forgive me if I am too technical, all I am doing is copying information from other websites so that you may be informed.  So here we go:


A few weeks ago the doctors took some amniotic fluid from Sheyenne's belly (that's real technical I know) so that they might run some tests in order to determine what is wrong with Whitney.  They called us yesterday with the results.  They determined that our baby has a genetic disorder called Triploidy.  Here's the best way I can describe it... Genetic abnormalities such as Downs Syndrome or Trisomy 18 are conditions caused by an extra copy of one particular chromosome. Triploidy is an extra copy of ALL the chromosomes.  Here's a more technical explaination:


"Triploidy is a rare lethal chromosome abnormality caused by the presence of an entire extra set of chromosomes. A fetus with triploidy has 69 chromosomes, rather than 46. The majority of fetuses with triploidy are spontaneously miscarried during pregnancy. Those that survive until birth will have severe growth retardation and multiple birth defects. This condition is incompatible with life." 


"Triploidy is a devastating condition caused by having a full extra set of chromosomes. This extra set of chromosomes causes a variety of serious birth defects, placental problems, and severe growth problems in a fetus. In fact, most pregnancies in which the fetus has triploidy end in a spontaneous miscarriage. Very few infants with triploidy survive to term. Of those that do, most are stillborn and those that are born alive usually die shortly after birth. Infants with this lethal condition are generally small due to severe intrauterine growth retardation (IUGR) and they have multiple birth defects, including facial abnormalities, such as cleft lip, heart defects, neural tube defects (spina bifida), and other serious birth defects. The exact pattern of abnormalities depends on whether the extra set of chromosomes was inherited from the mother or from the father. Unfortunately, there is nothing that can be done to treat or cure triploidy."


It is said that Triploidy happens in only 1-2% of ALL conceptions, which makes me laugh because it feels like that makes sense for us.  Another stat is 1 in 10,000 make it this far in the pregnancy because most babies die after only a month in the womb. 


So where does this leave us now?  That really is a great question because we don't really know that answer.  As we have been, we will continue to wait and see what happens.  We know that the doctors will not do anything "heroic" to save Whitney if she is born alive.  I think I can speak for both me and Sheyenne that all we want is to hold our baby girl.  So that continues to be our prayer to God, that he would allow us to hold this precious life that we have been so excited to see. 


Last night I got to feel her move in Sheyenne's belly for the first time!  It truly warmed my heart and now I know that my Christmas wish has come true.  If you have any questions please email me (seanwilson8552@gmail.com).  Thank you for continuing to read and we will continue to update this as God continues to teach us what we need to learn.