Tuesday, October 16, 2012

MaterniT21 {31 for 21}

This is gonna be a tough post for me.  I knew I couldn't start writing until everyone was tucked in, until I could light some candles & listen to some Mumford & Sons & ponder today's events.  A glass of Chardonnay would help, but I'll settle for my warm milk instead.

I started thinking about this 31 for 21 challenge last month.  Once I decided on the alphabet theme, I made a tentative list of potential posts for each letter.  I knew some posts would be light & fluffy, others would be more informational & a few would be emotionally charged.  This post is one of the latter.

As I've written before, we declined genetic & chromosomal testing during my pregnancies with both girls.  I knew I was quickly approaching "advanced maternal age" & subsequently was at higher risk for certain conditions including Trisomy 21 (a.k.a. Down syndrome).  Ben & I really didn't have a big discussion or debate about the topic.  It was simple, we both knew termination for any reason was not an option.  Period.  End of story.

As the saying goes, hindsight is 20/20.  I've been asked multiple times if it would've been easier had I known about Reese's Ds & heart defect before birth.  I mull this question over frequently in my mind & still don't know the answer.  What I know for certain is that Ben & I were grossly underprepared.  Receiving a birth diagnosis of Ds is akin to a punch in the gut.  Receiving a birth diagnosis of a congenital heart defect requiring open heart surgery is equally hard.  Combine both tidbits of information & it's been a rough day.

I can argue both sides of the equation.  I'm sure receiving a prenatal diagnosis of Ds would've been equally rough.  I no longer would've had the freedom to just enjoy my pregnancy.  Worry, stress & fear of the unknown would've consumed me but I would've had the opportunity to research.  I could've prepared for the potential challenges associated with having a baby with Ds.  I'm certain a level 2 ultrasound would've been ordered & Reese's heart defect likely identified.  I'm sure I would've driven Ben batty with the constant Internet searches but there's something to be said for being informed.  I'm sure I still would've been an emotional wreck after Reese's birth - but I would've been a prepared, educated, empowered emotional wreck.

In the past, receiving a definitive prenatal diagnosis of Ds was only possible through an amniocentesis or CVS (chorionic villus sampling).  Both of these tests are invasive & carry a small risk for miscarriage & other complications.  But of course some genius out there recently developed a blood test that screens for Trisomy 13, 18 & 21.  This test is 99% accurate, completely noninvasive & can be completed during the first trimester.  It's called the MaterniT21.  Catchy, don't you think?

This test has the Ds community quite worried.  The fear is obvious:  terminating babies that sport an extra chromosome will become more common. (more about this in a future post - trust me, I have ALL sorts of opinions on this subject & they don't belong here)

That being said, I think the MaterniT21 test serves a purpose.  It gives parents the opportunity to prepare for a child that will likely have extra needs.  And for this reason, I chose to have it done exactly 2 weeks ago.  We were told the results would take 10-14 days & according to my math 2 weeks = 14 days.  I was getting antsy.

I received the phone call today at exactly 3:30 pm.  I recognized the number immediately & took a deep breath.  A woman on the other end introduced herself & cheerily exclaimed, "I have wonderful news.  The results were negative.  Your baby does not have Trisomy 13, 18 or 21."  I'm sure she's delivered this news before & is normally bombarded with relieved sighs or exclamations of joy, not complete silence.  And I'm certain she didn't expect the cracking voice on the other end say, "I'm sorry, I'm sort of struggling with this news.  I have a daughter with Down syndrome so don't exactly feel like celebrating."  Her voice was caring & composed & she said, "honey, it doesn't mean you can't be relieved."

I'm by nature not a crier.  I rarely cried before Reese & then I cried a LOT after Reese & now I've reverted back to my old stoic self.  I hung up the phone & bawled.  Sobbed.  How could I possibly be relieved that I wasn't having another Reese?  Sure, I detested the early feeding issues & everything about her heart surgery, but Reese is our light.  She's pure joy.  I felt like an emotional schizophrenic. 

I texted my friend who knew I was awaiting the results & this is what she said:  "I'm so sorry.  I can only imagine the torn emotions.  Don't beat yourself up.  Being relieved is in no way saying you don't want another Reese (there's only one Reese anyway!), I'm sure it's more relief that hopefully this child won't have the medical challenges, won't have to fight against narrow minded society, and will allow you all as parents to still give Reese all the time & focus she needs from you to show this world who's boss!  This allows you to celebrate Reese's life even more.  This also means there will be one more typical child who loves Reese & grows up learning to love & see everyone as equal.  That's pretty awesome."  Thanks Linds, insanely good pep text.  I told you my friends are amazing.  And like I told her, my mind knows she's right - I just have to convince my heart.

What I do know for certain is I held Reese a little tighter tonight.  I gazed into her eyes & willed her to understand that we wouldn't change ONE thing about her.  That the lady on the other end of the phone would've gotten a serious tongue-lashing had she instead solemnly stated, "I'm so sorry.  The test confirmed your baby has Trisomy 21."  Really beeyatch, what are you so sorry about?  That her daddy had been secretly (okay, not so secretly) hoping we would beat the odds again, be that 1 in 100.  That although Bumpkin won't share her genetic makeup, he or she will love her like crazy & be another advocate for Down syndrome, just like her sister.  And that, just like my friend so wisely stated, there will only ever be one Reese.  And that one Reese is pretty freaking awesome.

So, I guess the cliff-notes version of this post is:

1.  Bumpkin does not have Trisomy 13, 18 or 21.
2.  I have completely mixed emotions about the news.
3.  We still don't know the gender. 






2 comments:

  1. I had no idea you were expecting again. Congrats! That's wonderful. I can't imagine the mixed emotions. But I understand that there would be some. I bet Reese will make an awesome big sister :)

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  2. I don't know how I would feel either - but your friend's message was spot on.

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