Thursday, January 16, 2014

Your first story and our miracle

To my sweet Sienna,

Six years ago today was the first time I held your tiny toes in the palm of my hands.  These delicate little toes.  I starred down a your squishy, perfectly round face.  You were the most precious gift of all and you were given directly to us to watch grow for many years to come!   Something we worried we'd never get to do and just like that, there you were so real, so strong and so perfect.  I'll never for one minute forget what a blessing you are, so on your 6th birthday I want to share your very first story.

At your 19 week ultrasound we received heart wrenching news that you had indicators of trisomy 18, a chromosomal disorder that is not compatible with life.  

I was alone in Phoenix in a cold, distant ultrasound lab room patiently waiting for the tech to finally finish her never ending 1.5 hour long ultrasound.  We weren't going to find out if you were a boy or a girl until I was with Daddy in Oklahoma the following week.  But as the tech finally finished her measurements and left the room she returned with two doctors I had never seen before:

"Mrs. S, we need to tell you a few things about the results of the ultrasound.  We are finding indicators of a fairly rare chromosomal disorder called trisomy 18.  Our findings include fluid in her coracoid plexi cysts and clinched fists.  It's also important for you to know that you are having a girl, which increases your risks by 60%.   Here are some print outs about trisomy 18, as you will read it usually leads to stillborn births or mortality within the first 6 weeks of life.... wok, wok, wok, wok, wok..."   

As my mind stopped listening and my heart nearly stopped beating I fought back tears of confusion and anger.   I thought back to the waiver I signed at my doctor's office refusing genetic testing and requesting not to be given knowledge of any abnormalities or disabilities.  I thought of your daddy who was so far away.  How would I tell him this news?  They couldn't be right.  There was no way, was there?  Wait!  You're a girl!  A girl.  We're having a girl!?  Daddy was supposed to be here with me to hear this news.  It is our news.  They stole our news. 

"Ma'am.  Ma'am!  I'm sorry, but we need your attention.  Because of your age and this being your first child we recommend that you do not attempt to carry to term. The chances of having a stillborn or late term miscarriage could potentially risk your fertility later on should you choose to try to conceive again. There are things we can do now that would make it less complicated." 

Those words will always burn in my mind.  "Leas complicated."  "We recommend that you do not carry to term." "Because of your age."

What do those things even mean?!  How can they be said to a mother?

I knew I had to be brave. I had to be strong. I was alone, but I could do it.  I calmly said that an abortion of any kind was out of the question and I wanted to talk to your daddy and do more research before taking their indicators seriously.  They pushed and insisted on immediate testing.  They repeated their recommendations.

I stepped out of the room to call your Daddy.  And then suddenly I wasn't so brave.  I cried and cried.  I wanted him there with me.  I was afraid to go back in the room.  I was afraid to move.  I was so afraid to lose you.  Scared and unsure I stopped their attacks by at least agreeing to take a blood test if they'd let me keep you.   The test only gave us more useless statistics that threatened to rob me of the joy we had feeling you grow in my womb.  But it did let me escape that office-prison of pressure and doom.

Weeks passed and I avoided doctors as much as I could.  Daddy refused to believe any of it from the start.  He says he knew it would all be ok and that you were ok.  But still, we prayed.  We asked everyone we knew to pray for our special intention. We begged Him to show us the ultrasound was a mistake by changing doctors and getting new ultrasounds.  When the repeat ultrasounds found similar results we maintained they were just paranoid.  Looking for things that weren't there.  The statistics had to be wrong.  How could they really know?  But deep down, just in case I begged God for a miracle.

We decided that I would leave early for my maternity leave so I could go to Oklahoma with Daddy when I was just 32 weeks along.   I wanted to start fresh with a new doctor far, far away from mention of trisomy 18.  At 33 weeks I visited the doctor who helped bring you into this world.  He agreed not to do any more ultrasounds.  He said he could assure me my growth seemed normal and you were perfectly positioned for birth.  When I asked him to say you didn't have trisomy 18 he couldn't be sure, but he told us of ultrasound misreadings that had been made before.  He suggested we remain confident it would all be ok.

We began to let ourselves believe it would all be ok.  And even I began to believe was ok.  Daddy insisted he wasn't worried, just as he had never been from the start.  We told ourselves the ultrasound was wrong.  It was a mistake.  The stress I had felt for the last few months subsided. I was with Daddy and together we knew we could handle anything.  His confidence melted my worry.

The day our first Bradley method class was scheduled, almost 5 weeks before we expected your arrival, you picked your birthday.

As the contractions began and I knew you were on your way, for some reason trisomy 18 was as far from my mind as could possibly be.  No one mentioned it.  I'd like to think no one thought of it on that special day.  And then there you were.  Right there in our arms.  Absolutely more perfect than we could ever have dreamed.

For the first time I saw tears roll down your Daddy's cheek.  Neither of us said it, but I knew then how hard he worked to be so very brave for his two girls no matter what that day would have brought.

Daddy was then and will always be my super hero, just like I know he is yours too.

Happy birthday, Little Love Bug!


  1. I am sitting here reading this with tears rolling down my face!!! Sienna is a perfect little darling!! What great examples of parents you are to her!! Happy birthday Sienna!!!!! I am so happy to be her teacher!! When she was sick everyone missed her so much!! Everyone needs a Sienna in their class!!!

  2. Great story! God bless each one of you!

  3. The kid whose MSAFP test came back elevated for Down Syndrome will be 5 in April. He came 11 weeks early (I developed HELLP Syndrome) and he has a host of other problems including autism but Down Syndrome was not in the picture. :)

    The doctor who did the second ultrasound also told us to please raise him and love him regardless of what the ultrasound showed -- no talk of abortion even if his staff did jump that ultrasound forward to get me in.

  4. I love this story! I was on the edge of my seat, all ready to be sad and depressed, and then I cheered and pumped my fist at the end. The good guys won. The good guys should always win.

    God bless you and your family!

  5. GOD BLESS YOU ALL!!! There is wonderful Trisomy Family and Professional support at www.TRISOMY.ORG and SOFT - Support Organization for Trisomy 18, 13, and Related Disorders

  6. Jess, I don't think I ever knew this story. God provided a miracle, indeed he did. And shame on the doctors for not respecting your wishes. However, this is a happy ending story! Hooray! We are so glad to have Sienna in our lives and so blessed that she is the best big sister to 3 little brothers ever!!!

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