Tuesday, April 05, 2011

Braxton's Story - Diagnosis

"I think your son might have Down syndrome."

I heard those words and wanted to throw up.  We were sitting in the little area of the NICU where Braxton's incubator was, behind the closed curtains.  It was our first morning there after a scary afternoon and night before.  Braxton was finally seeming stable - on fluids, temp rising - and we were finally starting to breathe a little easier.  We still had the issue of Braxton not pooping, but the enemas were being given regularly and we felt sure that the poop would come soon.  It ended up taking a couple more days for the poop to come, but it did, and it hasn't let up since.

I looked at the Doctor in quiet disbelief.  Our son was three days old.  How was it possible that he could have Down syndrome?  Isn't that something that is noticeable from the moment babies are born?  The midwives didn't say anything.  Our friends and family didn't say anything.  Not even the Nurse Practitioner, who was the one who sent us to the hospital, said anything.

Brian and I looked at each other in shock.  The Doctor said a few things about the signs he was seeing.  Something about Braxton's eyes, and an extra fold of skin on the back of his neck.  He also pointed out some "typical" signs that Braxton didn't have.  Things like square hands and a curved pinkie finger.  Then he paused for a moment to let Brian and I catch our breath.

I wanted to cry, or scream, or shout "NO!" and run out of there with my baby.  But instead, the words that came out of my mouth kind of surprised me.

"God has been preparing me this entire pregnancy to hear those words."

The pregnancy itself was a surprise.  We hadn't been trying to get pregnant.  Once we got over the initial shock of having another baby, we were really excited.  Every day of the pregnancy Brian would pray over me, asking God for a healthy pregnancy and a healthy baby.  I think every parent worries about their unborn child, and whether or not they will be healthy or "normal".  Most people worry for nothing.  Both of my prior pregnancies resulted in healthy babies, so really, what did I have to worry about?

Yet early on in the pregnancy I couldn't shake the feeling that something was wrong with my baby.  I even told a friend that I couldn't get Down syndrome out of my mind.  I tried to brush it off, telling myself that it wasn't of God to worry.

Then came our 14-week ultrasound, which was the morning after the night we though I had miscarried.  This ultrasound was the first in a series of genetic tests.  We were actually having second thoughts on getting the tests done, as they typically have a high percentage of false-positives.  And we knew that we wouldn't terminate the pregnancy for any reason, so what was the point in subjecting ourselves to worry.  But given the fact that we thought we had lost the baby, we decided to go ahead with the ultrasound.

Amazingly, the ultrasound showed an active, kicking baby.  Brian and I watched in wonder as our little baby moved around while the technician took measurements.  We were so relieved to see an active baby that we didn't care what the results were - or at least we didn't put much thought to it.

A few days later I got a call with the results of the genetic screening.  "The results came back reassuring. Your baby has a 1 in 86 chance of having Down syndrome."

Reassuring?  1 in 86 is reassuring?  They assured me that anything above 1 in 50 was good, although they do like to see the number more in the thousands.

Yikes.  I didn't feel good about those numbers at all.  But we reminded ourselves that there was only a 70% accuracy in that test, so that brought the odds even lower.

Ultimately I brushed off those test results, chose not to get the follow-up test, and decided not to stress about it.

Throughout the pregnancy my eyes were opened up to Down syndrome more than ever before.  A blog friend of mine announced that she and her husband are adopting two girls with Down syndrome.  About a year ago I read this birth story.  Then five days before Braxton was born I read this.

When the Doctor left us alone to digest what he had just told us, Brian and I looked at each other, burst into tears, and hugged.  We prayed that the test results, which were expected to come back in 72 hours, would be negative.  We notified our immediate families, and the pastors who came to the hospital to pray with us.

The next 72 hours were long, and an emotional roller coaster.  At times one of us would be strong while the other one broke down.  Sometimes we both broke down together.  We talked about lost dreams we had for Braxton.  Things like getting married and having a family.  We talked about how we worried about him being accepted as he grows up.  And we talked about all the other scary health issues that can arise with Down syndrome.

We tried to remind ourselves that we didn't have the results back yet, so nothing was final.  We spent a lot of time just staring at Braxton and studying his features.  For the life of me, no matter how much I tried, I couldn't see anything wrong with any of his features.  Then one night when I went home from the hospital for about an hour, I hopped on the computer and looked at the pictures we took right after Braxton's birth.  There it was.  In every single photo, I could see it.

When Braxton was born, there were three immediate thoughts that went through my mind.  First, of course, was "is he okay?"  A distant second was, "is it a boy or a girl?"  And finally, as the midwives left the room, I leaned over and whispered to Brian, "is his ear okay?"  That thought that I had suppressed the entire pregnancy suddenly came rushing back as I looked at Braxton's ear.  The shape seemed odd to me - kind of squished and puffy at the same time.

Brian assured me that the ear was just that way from delivery.  And since the midwives didn't say anything was wrong with him, I breathed a sigh of relief.

Friday was the day we were to get the results, and we anticipated that day like no other.  I was holding my breath, standing at a fork in a trail, waiting to see which direction life would be taking us.  I wanted to have faith that Braxton would not have Down syndrome.  But my mind and heart were both telling me otherwise.

The results didn't come in Friday, or even Saturday, as we were told they would.  As agonizing as that additional wait could have been, I think God knew we needed some extra time to continue to process things.  We continued to pray, and continued to have faith.  And we realized that "having faith" didn't just mean believing for negative results.  We realized that having faith meant trusting in God's plan, no matter what.  We also had to let go of our plans for Braxton and realize that God created him for a specific plan - extra chromosome or not.

On Monday afternoon, back at home with Braxton, we called the hospital to see if the results were in.  All the Doctors were gone, we were told, and the nurse wasn't sure about the results.  We called the Pediatrician just to see if the results had been faxed to her office, and sure enough, they had.  But all the Doctors had gone home there, too, and the nurse couldn't give us the results.  That was the most agonizing part - knowing the results were in, but that no one could tell us.

I was upstairs folding Braxton's laundry and Brian stepped downstairs for a moment.  I could hear the phone ring, and Brian answer it.  He came quickly upstairs and hung up just as he was entering our bedroom.  His face said it all.

Our boy has Down syndrome.

16 comments:

Robin said...

He's beautiful. He has a destiny. He is fearfully and wonderfully made. His life has purpose. He has an amazing family. He is deeply loved and rejoiced over. He is a blessing. He is perfect!

And we are all here to walk this walk with you. Love you guys!

Renee said...

He is beautiful. I love him. I love you. I haven't been able to get him off of my mind since you posted last week. God brought you both to my prayers often. God loves the White Family so much. Please know that. Praying always.

Andrea Busath said...

He is a beautiful baby boy. The family I nanny for has a beautiful little girl with down syndrome, and they too didn't know until she was born that she has down syndrome. But let me tell you, she has not only blessed the lives of her family members, but she has blessed my life and the lives of everyone around her. Your son is incredibly special and he too will influence and make a difference in the lives of those around him.

The Swanson Family said...

Shana,

I want to share a link to a blog of a friend of ours. Libby's son Charlie, who is now 3, has Down Syndrome. His diagnosis was unexpected as well. Her blog tells an incredible story of her journey with Charlie and her husband and their two other boys. She also has a book that she gives out to parents who have a child with Down Syndrome. I am sure she would be happy to talk with you and answer any questions you might have if and when you are ready. Her blog is http://blessingsandglory.wordpress.com/

Congratulations on adding another beautiful member to your family.

Scott

Cat said...

You don't know me, but I have read your blog off-and-on for years. I felt compelled to comment, yet all the words rushing to my fingers were cheesy and trite. I don't know how you feel, I've never been in your shoes. I can't imagine. And yet, from the little pieces I have gleaned about your family from this blog, it is abundantly clear that this little boy has been born into an immensely loving home. And that your family is going to see God's love more clearly than perhaps ever before.

He is beautiful.

Cat said...

Oddly enough, after commenting here, this was the very next post in my Google Reader:
http://lifeasmom.com/2011/04/parenting-a-child-with-down-syndrome.html

shell said...

thanks for sharing your stories and thoughts. cannot wait to see a pictures of this boy destined for greatness. love that god always knows what he is doing.

JB said...

Your faith & trust in God would make the bravest shutter. He would never give you more than you can take, apparently i'm not the only one who thinks your super woman. We love you guys, we know Braxton will change the world, it's only a matter of time. Don't give up on any dreams you have for him, everything is possible with God. We will keep praying for peace, strength, & wisdom. We feel so blessed to be in your lives.

Anonymous said...

Shana & Brian!
First of all -let me congradulate you on a beautiful little boy! He is a little Angel from God. He will bless you like have never been blessed. I will continue praying for you and your family - for the wonderful path you are on!
Love you guys
Angela

Kathrin said...

I have never met you and yet feel so close to you right now. He will be fine. You will be fine. And more than that. He will be one happy little boy, having you as his parents.

jesuscoffeeandfamily said...

Shana, I read this early this morning right as the boys were waking up, so I didn't really have time to comment then. I left it up to be sure to come back and comment later. Those pictures you posted from when he was born - he is adorable! I love his sweet cheeks! He is a beautiful baby boy! (Boys can be beautiful, right??) Amazing how God was preparing you all along for this. I can't say anything that hasn't been said, but many are praying for you. He's a doll, and while I don't have experience first hand with DS, others are right. You will be fine. He will be fine. God's plan for him is just beginning. I can't wait to see him grow up in pics on the blog!

Simplygrove said...

Shana, you amaze me and your family is one of the most beautiful families that I have ever seen! Your faith and love are true examples of the grace of God. Every single White child will have an extraordinary testimony and I am thrilled to watch all of them grow up. You are a blessed mommy and Braxton is sooo blessed to be apart of your family. We love you!

Kim said...

Shana, YOU are an amazing writer. As I've read these accounts of your journey, I felt like I was right in the room with you. You have the ability to draw people in with your story, to touch, feel, taste and smell with your words. I'll be buying your book one of these days, I'm sure!
As for Precious Baby Braxton, he's a gift plain and simple. He's a vessel of God's grace and mercy and the joy that he will bring your family will far outweigh any hardship. Personally, I can't wait to meet him! Love you all!

Anonymous said...

Shana,
The Lord has been preparing you your whole life to be Braxtons mommy. You are graced for this.
Kara

Anonymous said...

Oh, Shana ... praying for you and your family.
Logged on today to catch up on Braxton's first few days, anticipating reading that all is well, he is home and thriving, etc.
I wish I had something to offer. I will pray for your family every time God brings you to mind.
Hugs to you.
Rachel

Sadie said...

Shana, this is the most beautiful post. Your children are SO blessed to have you and Brian as parents. Praying you continue to feel His loving arms and endurance. Your incredible and so is your perfect new boy!

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