Thursday, April 18, 2013

Pregnant With Dystonia : A Birth Story



"Be strong in the Lord, and in the power of His might"......Push. Grit teeth. Stop.  "I can do all things through Christ who strengthens me"...Push. Open eyes. Close eyes. Stop.  "Fear not for I am with you"......Push harder, longer. Stop. Open eyes.  "I am your God; I will strengthen you, I will help you"......Push. STOP!!!!  Push again! He's out!!!  Wait.  Listen for baby.  No cry.  PRAY!!!

As I lay there listening, watching my husband for clues, everyone scrambled into action.  It was routine for them, choreographed well.  "Is the baby ok?!"  No answer.  Pray.  I look over at my husband with his eyes glued on our precious gift from God.    Pediatricians continue to work on the baby.  Still no cry.  13 minutes later he was intubated and transferred to the special care nursery.  "It's all my fault."  "The Dr. warned me this could happen."   "I am so selfish....so so selfish."

Let me backtrack a little to my 20th week of pregnancy.  Up until then everything was going really well.  I was the picture of health and Dystonic flare ups were few and far between.  The summer flu paid our home a visit and caused my Dystonia to flare up and I was hospitalized.  For those of you not familiar with my Dystonia.  I have Generalized Paroxysmal Dystonia.  It causes my muscles to contort and painfully spasm.  It usually begins with lower extremities and travels upward.  Once it reaches my trunk, my breathing becomes compromised and I risk being intubated.  For this reason my neurologist suggested I deliver early and not risk going in labor.  After weighing the pros and cons, consulting with my obgyn, and praying, my husband and I decided to try to deliver naturally vs. cesarean.  Well my 37th week arrived and I was a few days from getting an amnio done to tell if the baby's lungs were developed.  As the rest of the east coast braced for Hurricane Sandy to hit, the low barometric pressure ushered in a storm of other sorts.. a Dystonic Storm.  I was rushed to the hospital and was given Dilaudid for pain and Benadryl for the spasms.  My muscles continued to contort and I had very few options.  I was only 1cm dilated and Pitocin was started to speed up the process. The contractions of Dystonia combined with the contractions of childbirth were so painful!!!  Prior to labor I was adamant about not taking Ativan or Valium because the baby could be born floppy.  As the pain increased the Drs assured me everything would be okay and I agreed to the meds.  This is where I should have stood strong.  Instead I agreed and my baby was born floppy exactly like my obgyn told me.

Fast forward and everything eventually worked out.  After an extended stay in the special care nursery with some other complications, Atreo was sent home.  Today he is a healthy almost six month old baby, full of energy and thriving!

The main reason I am writing this post is to be an encouragement to anyone going through a similiar trial.  When my neuro suggested I have DBS, I freaked.  I wanted to explore other options before making such a life changing decision.  I prayed and asked God to guide me as to what to do.  Shortly after I was pregnant and it wasn't all about me anymore.  I worried if the baby could feel the pain I was in during my Dystonic Storms.  My wonderful Drs assured me everything would be ok.  I worried if the meds I was on would harm my unborn child and today I have a beautiful healthy baby!  I do wish I would have made a wiser decision about taking those meds during labor.  That is the most disheartening thing about my birth story.  But God is so good and it all worked out for good in the end.  Be encouraged friends!!!


6 comments:

  1. Inda, What a lovely and heartfelt post. I'm thrilled you've been blessed with a beautiful healthy baby. Enjoy your little treasure. -Pamela-

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    1. Hello! Thanks so much! I am truly blessed!! Love your blog, such a great resource!!

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  2. I am not at a stage in life yet where I want kids, but I know that in the nearer future I do, reading your this post has been very encouraging and reassuring. XX

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    1. Thanks for stopping by Rebecca!!! I just read your latest post and am also encouraged by your candor!!!

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  3. Inda, I'm so glad every worked out. I love my precious grandchildren. I hope to talk to you soon. Sincerely, Steve Zarren http://www.dystoniahealthadvocate.com

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  4. Praise God! Wow! I thought of you many times since you asked me about ITB and pregnancy and sent prayers your direction. SO HAPPY to read the story about your baby boy. Congratulations and take care!!!

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