Monday, September 30, 2013

Rachel: Part 1 - Up With Down Syndrome

I'm posting slightly sooner than normal, as well as a little out of my usual order for October's Momster.  I would normally start by introducing the Momster of the Month, but I first want to share the story of her son Jacoby, who has Down Syndrome, and her reaction to finding out this news.  Thank you, Rachel, for your honesty as you share your raw emotions with us.
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Rachel and her husband Eric went for their 20-week ultrasound, and could not contain their tears as the technician announced they were having a boy! "I felt so much more connected to the little person in my tummy, immediately starting to plan out his life".  Rachel recalls a follow-up appointment the next week:
"...the doctor mentioned there may be something to worry about.  There were 2 minor findings:  hydronephrosis (a dilated kidney) and ecogenic bowels (bowels more firm or harder than normal).  Now, hydronephrosis is the most common abnormality detected on prenatal ultrasonography.  Our doctor stated he'd be watching out for any changes on an additional ultrasound to be done a month later.  He briefly mentioned it could be a marker for Down Syndrome, but the rest of the sonogram looked unremarkable and did not seem too convinced.  We left the appointment a little more than disappointed.  A dark cloud sort of followed us out, and worry began to set in."
They kept this news to themselves, as to not worry friends and family over something that could be nothing.  They tried their best to reassure one another that everything was fine.  "We were young, healthy, newly married, happy.  There was no way something like this could happen to us."  Rachel and Eric return for a follow-up the next month:
"A second ultrasound showed no change, including no other markers consistent  with DS.  To be safe, our OB sent us to Tacoma General for a visit with a genetic counselor and an extensive, 45-mintue ultrasound...After many questions and images, the counselor told us we had a less than 1% chance of having a baby with Down Syndrome, but the only way to truly know was to do an amniocentesis (a test that takes a sample of the amniotic fluid in the womb through a large needle going through the abdominal wall and into the uterus).  The amniotic fluid has the DNA makeup of the child and could be tested for the number of chromosomes.  This test not only sounds scary and painful, but it has been known to cause pre-term labor.  Eric and I knew that even if the test showed positive for Trisomy 21 (3 copies of the 21st chromosome causes DS), nothing would change.  We would still be having a baby and we would love him no matter what.  Why risk pre-term labor when the outcome did not matter?  We held onto the thought of less than 1% chance and played the odds.  To be honest, we sort of pushed the idea out of our minds and figured we were safe.  I mean, 1% chance!"
Rachel recalls the morning their son was born in July 2008.  After 16 hours of labor, an epidural, and a cat nap, it was time to push.
"Moms, stop for just a moment and remember this moment right now.  The intensity of excitement, the pain, the joy, the emotion...childbirth is a world all it's own.  Nothing compares to those moments, the moments leading up to the first time you see this little person who you've known for 9 months, but only imagined their face.  As I gave my final push, I had so many incredible emotions rush over me.  I had never felt so in love with Eric.  We did it, we made a baby and now he was here! Wow! I did it!  I birthed a baby!  What a miracle!  They placed him on my chest and I melted.  His big almond eyes looked up at me and I was beyond in love.  I noticed his face looked a little different, but I had never seen a newly born baby this early before.  They took him from me to clean him off...and we heard whispering, and more whispering.  Finally, the Dr. came to my side and said 'Congratulations!  Everything looks fine, although there are some things that make me think he could have Down Syndrome.' I just looked at her and said 'ok'.  I grabbed for Eric's hand but it was already on my shoulder, gripping me...She was ordering a blood test to be sure, but it could take a few days to get the results.  Eric later told me that he knew, as soon as he looked into his eyes, he knew he had DS.  I was shocked but something took over.  I call it 'Mommy Mode'.  I just wanted to hold him.  I wanted to try nursing him.  I wanted him close.  We had family who wanted to share in the welcoming of our boy.  We allowed everyone in and then made the awkward announcement that he may have DS but we would have to wait to find out for sure."
Rachel remembers the smile on her best friend Angie's face as she held Jacoby.  "She was telling me that everything was going to be ok and that he was precious and beautiful."
"And he was." 
The time came for all of their friends and family to leave, and Rachel was wheeled into a recovery room.  This was the first time she was alone with her husband Eric after realizing their lives had changed, and Rachel shares their emotions:
"As they wheeled me into the next room, I was holding Jacoby, wondering if everyone knew.  Like there would be a sign on my door or a big red flag on my chart.  Jacoby was put in the special care nursery for the night to monitor his oxygen levels.  Children with DS have low muscle tone and can have a hard time taking deep enough breathes.  [Eric] crawled into my hospital bed alongside me and put his head on my chest, holding me tighter than ever before.  There were tears, lots and lots of tears.  We couldn't tell whose were whose.  Reality sank in and we needed each other more than ever.  So many thoughts ran through my head.  I knew our love was deep and strong, but were we strong enough for this? Could we raise a child with special needs?  What if this breaks us?  Could I be a good mommy to him?  Could I love him like I always imagined loving my child?  For a few short moments, doubt filled my head.  I'm not proud of that, but it's the truth and it's real.  And then, that 'Mommy Mode'  kicked in again and I just knew we would be alright.  That love would conquer all doubts and that we would be a family, just like we always wanted...Mommy, Daddy, and our Jacoby."

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  1. Aww, I'm so excited to read this month. Jacoby is a beautiful little boy. I'm looking forward to reading more about Rachel and her family. Thanks Amanda!


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