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Oh By The Way, Your Baby May Have Down Syndrome {a short story}

ultrasound picI never imagined my entire life could change in a hallway, but that’s exactly what happened.  I had just left the doctor’s office for my four-month prenatal check up and ultrasound.  It was the super exciting visit where you finally get to find out what you are having… a boy, a sweet little boy to add to our family of three, my husband, our 14-month-old daughter and myself.  We were over the moon excited.  My husband was finally going to have his son.  The son he had dreamed about his whole life.  The son he had named before he even met me 10 years ago.

My doctor was gone on a week long vacation so after our ultrasound we went in to the exam room to meet with one of the nurse practitioners and go over the results from the ultrasound.

Sitting across from her in the exam room I watched as she scanned through the printout from the ultrasound.

“It’s a boy… everything looks good… but oh, wait… there is something noted on this sheet here… looks like the nuchal fold is thicker than it should be.  I’m not sure exactly what that means… but I’m sure its nothing… your doctor will be able to tell you when he returns from vacation so I will have him call you when he gets back next week.”

I sat speechless….

“Come again?”  I finally uttered, stunned and not quite sure how to respond.  “What do you mean the nuchal fold is thick?  What is the nuchal fold and what does that mean? And why don’t you know what it means?”

Staring back at me was a woman desperately searching for answers.  It was as though I could literally see her wheels turning as she scanned her brain for a response. Finally she spoke, “I’m so sorry, “ she said, “I don’t want to try and explain something I’m not totally sure about.  I’m more comfortable having your doctor give you a call when he gets back.  I’m sure it’s nothing… “

Nothing…

I wasn’t ok with that, and she could tell.  So we settled on her contacting a different doctor who wasn’t on vacation and calling me back later in the day that day or the next.

My thoughts were racing as I walked down the long hallway toward the exit.  My husband had gone to pull the car around or something and I was slowly making my way to the door.  I wasn’t aware of anyone or anything around me as I walked, staring straight ahead in a daze.  I should have been beaming at the news that we were having a boy… but all I could think about was this nuchal fold and what on earth it could mean that it’s thick… “What does that mean Lord?”  I quietly asked as I struggled to lift one foot in front of the other.

I was so deep in thought I didn’t even notice the woman calling after me, “Ma’am… Ma’aaam!! MA’AAAM!!!!”  Her last cry snapped me out of my haze and I quickly turned to see that nurse practitioner running after me down the hall.

“Yes?” I said, startled and a bit confused.

What she said next happened so fast I could literally feel the rug pull out from under me and send me into a state of free fall. Catching her breath she said, “Sorry ma’am.  I wanted to catch you before you left.  I talked with one of the nurses about that nuchal fold and she told me that it is a marker for Down Syndrome.”

I felt the air suck from the room as if I were in a vacuum.

“What?” I said stunned. “D-down Syndrome…?” I stared blankly at this woman who had just chased me down a public hallway of a major hospital.  People were walking passed us as if in slow motion.  I felt eyes glaring at me as though they knew I had just been given shocking news.

What is she going to do?

How is she going to react to this?

All questions I felt everyone was quietly challenging me with as they strolled passed.

I didn’t even realize the nurse was still talking to me.  “I would like to get you scheduled with a specialty doctor so you can have a more detailed ultrasound done where they can look for additional markers for Down Syndrome.”

Was she really talking to me about this in the hallway?  Is this common procedure?

The next thing I knew I was at the reception desk staring at a nice young lady who was telling me dates and times that this specialty doctor could get me in.  “The 24th at such and such time” she said… I don’t even remember the time at this point, but it’s the date that matters most – because the date she gave me was three long weeks away!!

She must have sensed my concern and said, “I’m sorry ma’am… that is all they have available… they are really booked out and understaffed.”

I took the appointment and ran… well, not literally… but I did make a b-line for the door as fast as my achy pregnant body would take me.  There was no way I was going to stick around to see what life altering surprises lay lurking in the hallway next!

Sharing the news with my husband in the car was like a blur.  I assume I filled him in but all I really remember is being at home, laying in bed staring at the ceiling…

Down Syndrome…

I’m having a son and he may have Down Syndrome… What does that even mean?

I was clueless… confused… in shock… and bewildered mostly at the way this news was delivered to me.  In the hallway?? Really???  And I have to wait three weeks for this other appointment to get some more answers?

Just the thought of waiting any longer made me feel desperate… hopeless even.  That’s when I knew I had to do something.  I instinctually picked up the phone and called my girlfriend who was a nurse and used to work at the doctor’s office I had just come from.  When I shared with her what happened she was stunned – appalled, really.  She told me she was going to put in a call to her former boss, the manager of that department, and have her call me.

It was maybe ten minutes before my phone rang and on the other end was the department manager.  Still in a daze I relayed the events of the afternoon to her. After apologizing profusely she asked me what she could do for me and the first thing that came to mind was getting that specialty ultrasound scheduled much sooner.  She made the call.

In a matter of minutes she got back with me letting me know she had gotten it rescheduled to the very next day.

My husband had notified my work that I wouldn’t be back for a few days.  Fortunately he had the next couple days off too so he stayed by my side as I lay in bed… silent… and in a daze.  I felt paralyzed by the shock that such life altering news was delivered to me in a hallway.

Oh, by the way… your baby may have Downs Syndrome. Is how it replayed in my mind over and over again.

Down Syndrome…

The next day we walked into the hospital hand in hand ready to get some answers.  We had been in prayer all night and were trusting and believing for a good report.  The purpose of the new ultrasound was that it offered a more detailed image and would search for additional markers.  If it didn’t find any then the thick nuchal fold from the initial ultrasound would be deemed an anomaly and on its own wouldn’t point to Downs, but if it did find additional markers then our odds of having a baby born with Downs would increase.

The doctor did the scan and we watched as our little guy kicked around in my belly.  He was definitely a boy!  In a matter of 30 minutes the doctor had completed the ultrasound, left the room, and then returned to review the results with us.  He looked us both in the eyes as he explained that he had indeed found an additional marker that could point to Downs.  There was something in our baby’s heart and this, combined with the other, significantly increased our odds.

I wept.

I wept as I relayed the events of the previous day with this man.  I wept as I thought about our precious baby boy and as I reflected on all of the joyous phone calls we made to friends and family after we found out our first born was a girl… that joy so opposite the desperation I felt in the last 24 hours since the ultrasound for our son and our search for answers.

I wept and I wept and I wept…

Lord, what is happening?!  How can we get a sense of closure and peace?

The doctor was so kind and just waited… it was as though we were his only patients for the day.  When he felt the time was right he offered us another test… a test that he said he could do for us while we were there… an amniocentesis.  They would take some fluid from my uterus and be able to test the cells to know for sure weather or not our baby had Downs.  There were some risks involved so we asked if we could take a little bit of time to think and pray about it and went to lunch.

What a whirlwind… the joy of finding out we were having a boy to this moment of deciding if we wanted to know now or after the baby was born whether or not he had Down Syndrome.  After taking some time to sit together, eat lunch and pray we had some clarity.  We knew that no matter what we loved our baby.  We knew that God had both our baby’s destiny and ours in His hands.  We knew that regardless the outcome we would rejoice at the life of our precious baby boy – he was our son.  Ultimately the final decision came down to the way the information had been presented to us and the added stress it had caused… it was like a bomb had been dropped on our lap and we felt the only way to protect our unborn child from the stress it put on me personally was to get some definitive answers.

So we went ahead with the procedure and got to watch our little guy on the monitor for the third time in two days.  We watched as the needle approached the uterine wall and we watched the stillness of this precious life, as he lay snuggled safely and peacefully inside my belly.

We were in love.

We were in love no matter what the results of the test were.  This was our son.  The son we had prayed for and dreamed about in our eight years of marriage.  He was ours, and we were already so proud of him for sticking in there with us during this period of stress.  What a fighter.

After a few days of waiting I got the call from the nurse.  I was actually back to work at the time so I walked outside as I listened to this sweet lady tell me the results from the amniocentesis – our son did not have Down Syndrome.

I fell to my knees and wept….

I wept and I wept and I wept.

What a whirlwind.

Five months later on September 21, 2011 we gave birth to our precious baby boy who we felt like we already knew so well.  Our little fighter.  Our son.

You want to know something?  After all of that the thing that has impacted me most from this entire series of events wasn’t the way the nurse called after me in the hallway to casually tell me such life altering news. No, for me as I reflect back the most powerful, life-altering component that started in the hallway of a hospital and ended on my knees outside my work was the power of a mothers love.  A mother’s love that so consumed me my maternal instinct took over and I was willing to do whatever it took to ensure the safety of my baby – to protect him.  My love for my baby transcended all else and I knew that I knew that I knew it didn’t matter what the results of some test were… this was my son whom I loved more than words, and was already so proud to call mine.

Blessings,

Launching 11.26.13 – Not aLone Mom will be ministering to mothers with children who have special needs with a brand new team member… Ruth Motley.  Mark your calendars and please help spread the word.

Krissy Nelson

Hi, I’m Krissy! I write. I speak. I love Jesus with everything that I am. I am a mom. I am a wife. I am a child of God. My passion is to empower the everyday believer in their extraordinary potential as a child of God! To empower you to live fearlessly-obedient-Spirit led lives! With Christ we can do ALL things! And each of us are called and commissioned to influence the world around us.