January 18, 2013

A very special post by Heather

"All children are beautiful when they are loved."  ~Bertha Holt

This is perhaps the most difficult post I've ever written, not because I'm sad or broken, but because I know this isn't what you're expecting.  Usually our blog posts are about diapers, or maybe parenting, or a fun giveaway.  This isn't that post.  

In late July, we found out to our utter shock that we were expecting baby #3.  Why was I so shocked?  First, because I'm the ultimate planner.  Nothing happens without me planning every last detail.  Second, it took 3 years to conceive our son Colby.  We had medical interventions, lots of tests, months of temping and taking ovulation tests.  I honestly never thought that we'd get pregnant without these interventions.  But despite all of that, here we were.  

  

It took me a long time to get used to being pregnant again.  It didn't help that I was sick for 18 weeks.  Just as I was feeling better, I had some routine blood tests.  A few days later my doctor called.  

"Your tests show a high risk for Down syndrome.  We want to do an ultrasound and some more testing."  

Normal risk for any pregnancy is 1:700.  Normal risk for a 36 year old woman is about 1:300.  My risk after this blood test was 1:28.

No problem, those tests are never accurate anyway.  We scheduled a Level II ultrasound with a specialist and were excited to find out the gender of our little bundle.  

But not so fast.  During the ultrasound they found 2 markers for Down syndrome.  Our risk was now a life-altering 1:3.  

We held it together in the doctor's office.  Afterwards we went for a quiet dinner before picking up our kids.  Neither of us ate much and I fought tears for most of the dinner.  Down syndrome?  Really?  That night I lay awake long into the wee hours, pleading with God to make our baby be okay.  Just make him healthy, I begged.  

We went back to the specialist for a blood test called Maternit21.  It's a new test that can determine with 99% accuracy whether or not a baby has Down syndrome.  For most women, this is a perfect alternative to an amniocentesis.  After the blood draw, the wait began.  

We had Thanksgiving, where we bravely went ahead with my plans to do a gender reveal pumpkin pie.  I cried as I made the cheesecake with a hidden blue layer and solemn as I later cut it in front of my husband's entire family.



Then we all had the stomach flu.  It was miserable but took my mind off the wait.  Finally, 2 weeks after the blood draw, the genetics counselor called.  

"The test is positive for Trisomy 21.  Your baby has Down syndrome."

I would like to say I took the news stoically.  I did not.  I cried and cried.  My husband was home at the time, but missed hearing the phone call.  He came out to where I had been working in the garage and asked a question about something work-related.  But one look at me stopped him mid-sentence.  He got down on his knees and hugged me tight.  We stayed that way for several minutes.  Eventually he said something about it being okay, that we'd be okay.  That the baby was perfect the way he was.  That we'd love him just as we love our other two.  

The next days are a little blurry in my mind.  We met again with the genetics counselor, who politely offered to tell us about our options for termination (90% of mothers carrying a child with Down syndrome choose to terminate) or adoption (over 200 families are currently on a waiting list to adopt babies with Down syndrome).  We met with our regular OB and with our new specialist OB.  We scheduled an echocardiogram to look at our baby's heart (up to 60% of babies with Down syndrome have heart defects).  We stumbled through those first 2 weeks after diagnosis.  I read a lot on Ds, I joined the local support group, we secretly Googled pictures of babies with Ds when we thought no one else was looking.  

And gradually, it was okay.  We told our families, we started telling our friends, and the more we talked about Down syndrome, the more okay it was.  


I'm now 29 weeks pregnant.  The echocardiogram and a follow-up ultrasound have both shown that, so far, our baby is perfectly healthy (just as I'd begged for from God).  

If I go into labor on my own, I'll attempt a vbac.  If I don't go into labor, then on April 2 (39w2d) we will have a repeat c-section.  Both of my previous births have been cesarean, due to a variety of issues.

And the best part?  We're excited--THRILLED--to be having this baby.  I can't wait for him to be here.  Yes, there will surely be challenges, but there are challenges with every baby.  (Our son Colby cried for 4 months straight no matter what we did...oh, that was hard.)  And no matter what, this baby, Down syndrome and all, is a blessing. 



 Resources:
www.DownSyndromePregnancy.org
http://www.ndss.org/
http://www.efdsn.org/ 

~Post written by Heather Hicks, owner of Cloth Diaper Outlet and the I Love Cloth Diapers blog

14 comments:

Thank you so much for sharing your story. I pray things will continue to go well for you. I praise God for your little one and that you and your husband are ready to love him no matter what.

I have a friend whose second child, oldest son is a Down Syndrome child. They went on to have 5 more children all "normal". Their son was a joy to be around when he was younger. I'm sure he still is, we just don't see them much anymore. I've always thought that God picked special parents to be the mother and father of a Down Syndrome baby. You are very blessed. Praying for a successful vbac for you!

First, congratulations on the upcoming arrival of your precious baby boy! This is a beautiful story and I admire your honesty as you shared your feelings! I hope that he is a happy healthy baby boy! I work as a pediatrics RN and can honestly tell you that kiddos with DS are the sweetest, gentlest,most loving little kids. They always are so gentle and have the sweetest dispositions, your family will be so blessed with your newest arrival <3

Children with down syndrome are the most sweetest little things on the planet! I also had a scare of a chromosomal defect with my pregnancy and it is hard to digest but you are right, no matter how this baby comes out you will love it to the moon and back!

What a lucky little boy to have such loving and caring parents. God bless you and your beautiful family.

It gives me great joy that you are not one of the 90%! The Lord WILL bless you for your faithfullness and devotion to your children! I can't wait to see pictures of him in cloth :)

What a wonderful story to share. I am so glad you chose the gift of life for your baby boy. I hope he is a blessing unlike any other to you all.

I just found your site and blog. CONGRATULATIONS to your family and baby boy as you all are very blessed to have "found" one another. I will be following along your journey.

Congratulations on your sweet surprise blessing. This baby chose a great family. :-)

I truly believe that each of our sweet babies are meant to come to their specific families and although you will have some new experiences and challenges, he will steal your hearts every day. Congratulations and I love the pumpkin pie idea for your gender reveal.

How sad to read that 90% of moms terminate when they find out their babies are Down's syndrome. Thank you so much for this post, for your courage to love this precious child and give him life. He already is so loved and I know he will bring so much joy to your family!

I'm so glad that you have chosen to look past the immediate scare and get excited. Downs Syndrome babies/children are wonderful. Yes, there are heartaches that may come about, but I've never met a child with Downs Syndrome that hasn't changed my life for the better.

I don't know if you've seen it, but this is wonderful blog by a mother of a child with Down's Syndrome. http://myshtub.blogspot.com/

And here is another blog by a mother of Ten whose youngest has DS. They are both very uplifting and inspiring!
http://oceansofjoy.wordpress.com/

Blessing and Joy!

Thank you for sharing - what a beautiful tribute to all babies, but especially this special boy you're about to meet.
-Lisa Britton