Down Syndrome…Sharing Their Story…..Brandi & Seth Part 1

Thank you to my sweet friend Brandi for sharing her storythe beginning of her journey with Down Syndrome..

     I truly cannot remember the last time I put pen to paper (actually fingers to keyboard) to write anything longer than a Facebook status.  That’s a tough thing to admit for a recovering post-education addict!  Raising children just doesn’t allow for much personal reflection unless you purposefully and diligently carve it into your day (hmmm, a little self-conviction here?).  

So when my dear friend Jenifer asked if I would write a guest post for her blog, it brought me some pause.  

What do I have to say?  

Can I actually put sentences together anymore?  

How much will everyone laugh at my ramblings?  

Is my heart ready to bare everything that has happened in the last 18 months?  

Will I be able to let the love of God shine through?  

     But then I realized that I have been wrestling with wanting to document my Seth’s birth and Down syndrome diagnosis.  God has been putting on my heart the desire to get my experiences, feelings, emotions, wants, hopes, dreams all out of my own head where they like to mull, tumble and tend to get stuck.  He’s pretty amazing at putting the right people in the right place at the right time to move us along and encourage us to actually do those things He calls us to do!  

So stepping out in faith… 
walking in transparency…
and praying for the words to come together…
here goes.

        Seth Anthony Reyes was born on Sunday, July 10th, 2011 in a flurry of pure crazy coming straight from his Momma!  He came into this world at 37 weeks and 6 days with not quite 2 hours worth of labor!  Contractions started at 4am (my body’s apparent birth alarm clock – same time for every one of my kids!) and he was born at 5:55am. Good thing we didn’t decide to birth in Birmingham or even Anniston or we would have had a home birth without that being in the plan. No pain meds wasn’t in my birth plan either but Seth apparently wanted us to have a glimpse into “his way” – all things in his time!

Gotta back up here just a bit.  In my “Advanced Medical Age” along with the losses I’ve had in the past 5 ½ years, I’m put into the high risk category during pregnancy. For me that means bi-weekly OB visits, weekly progesterone shots, a few extra sonograms and a cerclage (cervical stitches); all to help keep my babies where they need to stay for 9 months. One of the extra sonograms takes place shortly after the 2nd trimester and is a level 2 done at UAB.  

I was already scheduled for that when my blood work came back from the AFP/quad 4 screen that showed I was at high risk for having a baby born with Down syndrome.  So my husband, Josh, and I went to this sonogram and given the awesome news that we were having our first boy!  We were SO excited to finally have a son; him a little more so than me of course!  An answer to our prayers!

During the sonogram, the maternal/fetal doc told us all about soft markers for babies with Down syndrome – an ultrasound cannot diagnose Down syndrome – these markers are not definitive but are more common in a DS diagnosis. 

A few of the more common markers include:

  • lack of cartilage in the nasal bridge (we didn’t have that)
  • thickened nuchal fold which is a thickness of skin at the back of the neck (didn’t have that)
  • bright spot on the heart (didn’t have that)
  • enlargement of the kidneys (not that either)
  • bowel obstructions (nothing seen here)
  • smaller size head circumference and shorter femur and/or humerus bones 

These last three were our markers

         So she tells us essentially that the length of the baby’s arm and leg bones and the circumference of his head were measuring smaller than his gestational age.  She added together the numbers from the AFP, my age, the ultrasound results and came up with our risk to have a baby with Down syndrome at 1 in 3.  Pretty big odds.  

Then the question came – “Would you like an amniocentesis to determine diagnosis?”  In those few moments lying on the table with my belly exposed and Josh sitting next to me looking at the black and white images of our little baby, we looked at each other and without hesitation we both knew that a diagnosis would not change anything for us.  We didn’t know what Down syndrome meant but we didn’t really need to.  

The God we serve is big.  
He is loving.  
He gives good gifts.  

The sanctity of life is precious to Him and therefore precious to us.  Plus any percentage increase in miscarriage, no matter how small, was just not something we were willing to risk, so we opted against the amnio.  During this time, I was praying that for once I was not the “1 in ___” statistic.  

The MFM (Maternal Fetal Medicine) doc suggested a return visit with a follow-up sonogram in a month.  We agreed.  By the time we got to our car in the parking garage, we were both settled that God was going to show them how awesome He is and this would not be an issue!  We had our friends praying in agreement with us.  Josh and I both had an amazing supernatural peace about this whole situation.  We went back a month later, in March of 2011, for the follow-up.  

The same MFM doc squirted the warmed gel on my belly, looked at all the “marker” areas again, measured femurs and humerus bones and head circumference and then measured again.  She told us that as much as she enjoyed our company that there was no need for us to come back!  There was no real heavy sighing of “Whew, dodged that bullet!” or “Oh, thank you God for answered prayers!”  We truly already believed that was going to be the result before we walked in the door.  So for the rest of my pregnancy (5ish months), we didn’t think any more about Down syndrome.  

I haven’t really revisited that time until now

To be honest, I wonder if I was in denial some rather than walking in pure faith.  We didn’t know anyone with Down syndrome or anyone with a child with Down syndrome.  We didn’t have one second of experience with Down syndrome.  So to us, or at least to me, that was a very scary sounding thing.  The only thing I had in my head about Down syndrome was that it must be really awful if abortion is a common option offered to women with the diagnosis.  

But now I didn’t have to think about it or learn about it.  The rest of my pregnancy went as planned and the biggest struggle we had (besides getting my hips stuck with a needle every week) was trying to figure out a name for this little boy! 

Please join us tomorrow for Part 2 of Brandi and Seth’s story.

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