A special day…and spreading awareness

Today is a very important day in my life.  Let me explain….2 years ago today my youngest daughter Leah had to have surgery to correct a birth defect she was born with.  It was one of the hardest days of my life.  I had to hand over my 2 month old baby to an anesthesiologist and a team of doctors trusting that I’d get her back, and that she’d be okay. 

Her condition was one that I’d never heard of when our pediatrician called me that night in February…Leah was only 2 weeks old!  I still remember asking him to spell it and writing it down….what a long, scary word it was.

CRANIOSYNOSTOSIS

Of course I’d googled some of her symptoms that afternoon.  After getting home from a routine well-baby check…what should have been routine.  It was there that her doctor and I both noticed that her forehead was protruding on one side a bit.  That bulge had not been there the week prior.  He sent us for x-rays “just to make sure.”  I didn’t even have time to panic since I was too busy reassuring my 9 year old that everything was fine.  She was already worried about her baby sister.  I was very fortunate that we were able to get in within the hour to get the x-ray.  I wanted to get it all over with and out of the way…surely she was fine. 

While browsing the web, I found out it was probably one of two things…plagiocephaly or craniosynostosis.  The symptoms are very similar, but the treatment is worlds apart.  With plagio the baby’s head is misshapen and requires repositioning the baby while they are sleeping to help round out the head.  If that doesn’t work, the baby is issued an orthotic molding device (helmet) to help shape the head as the bones are growing and forming.  I’m sure you’ve seen babies in some of those helmets. 

And in ONLY 2% of the cases, the symptoms are caused by cranio.  Craniosynostosis is when the baby is born with one or more skull plates fused together.  All of our skull plates have to be separate to allow our brain to grow properly in our formative years.  As we grow older, these plates begin to grow together.  But babies need their soft spots, and if they are born with any of their plates fused together, they have to undergo surgery in order to separate them. 

Always the optimist and never one to worry until I absolutely have to….I figured there was no way that she was in that 2%.  In fact I’d seen pictures online of head shapes exactly like hers, and it was plagio.

So when the phone rang at 6pm and it was my pediatrician calling from home…I got nervous.  Getting that phone call 2 weeks postpartum, I was an emotional mess…not to mention my husband was out of town on business.  Could this really be happening to us?  The description of the surgery Leah would have on her skull sounded horrendous, and I was in disbelief that they could do this to a baby. 

On Valentine’s Day 10 days later, the diagnosis of craniosynostosis was confirmed.  In fact, Leah’s plastic surgeon could tell the moment he walked in the room just by looking at her, and told us her case was moderate to severe.  I walked out of that appointment with a surgery date in hand, and my husband and I both felt as if we were living in a movie!  Shortly after that, I started my first blog in order to chronicle our journey with Leah….her cat scan, waiting and anticipating the surgery date, her surgery and hospital stay, countless trips out of town to get her helmets adjusted (she ended up with 3!) and therapy for her neck (torticollis)….I journaled it all at fearfully and wonderfully made.  It was very therapeutic for me.

Two years ago today, April 14th 2008, Leah underwent “Endoscopic-assisted Cranial Vault Reconstruction surgery.”  This day is one I will always celebrate….the day I handed my daughter over to God, and HE chose to hand her back!

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Today Leah is a happy, energetic and thriving 2 year old.  She loves to be outdoors, the playground, Sesame Street, look at and read books together and play with her sisters.  There is a possibility of another “touch up” surgery in 2-3 years if her bones don’t fill in in all the right places, but I try not to worry….after all they tell me it’s only a 4% chance.

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33 Responses to A special day…and spreading awareness

  1. Fresh Local and Best says:

    D – What a trying experience to your family it must have been to have gone through this. Your daughter is beautiful, healthy and shows no evidence of craniosynostosis. This is a sweet reminder of how lucky we are.

  2. Simply Luxurious says:

    Leah is beautiful and each picture says so much. Thanks for sharing your story. You and your family clearly have a tremendous amount of strength and love. I hope today is a lovely one for you.
    Take care,

  3. Bridgett says:

    Oh wow, I can't even begin to understand what you must have been going through two years ago. My heart goes out to you as a mom. Your little one is absolutely darling and I wish her the best of health for the future. Enjoy the day.

  4. ButterYum says:

    Happy Anniversary ;).

    I made it through your post without tears until I read, "This day is one I will always celebrate….the day I handed my daughter over to God, and HE chose to hand her back"! Amen.

    🙂
    ButterYum

  5. Amanda says:

    Amazing. Your beautiful girl is such a miracle!!

  6. Pamela @ Seeds of Nutrition says:

    Truly a day to celebrate! Leah is sure a Cutie!
    I too had to hand my youngest over to my Lord before he was born and the day he was born. He went into surgery at 6 hours old to cut away what ended up being only 1/4 inch complete blocked duodenal and reconnect so he could eat and digest food. He regurgitated all amniotic fluid in gestation. We both were at extreme high risk of dying prior to birth. He spent 10 days in NICU. Then came home, thrived and today is a strapping 24yr.old U.S. Marine.
    It's times like these that the Lord uses to mold us more into His image.

  7. Yenta Mary says:

    What a beautiful, happy little girl and a day worthy of the grandest celebration!

  8. Anonymous says:

    My little girl is 5 months old and also has craniosynostosis. She will have the surgery when she is 10 months old. Your daughter looks wonderful! Very encouraging! I know that God doesn't give us more than we can handle!

  9. Peg4Jesus7 says:

    Thanks so much for sharing your story and your celebration, Denise. What a journey you've been on with this, and I've been blessed to be here to see you and your family grow in grace and strength. God is faithful, and so are you, my friend! Many blessings to you and your beautiful family XOXOXO

  10. Linda says:

    What a beautiful girl. It is a blessing to see her so happy.
    A SITS friend

  11. Denise says:

    Thanks so much everyone for your kind comments!!! Sometimes Leah's story seems like a dream, but really it's something I'll never forget!

    I feel I've neglected my blog & blogging friends lately as we were out of town again…Disney again. We squeezed in one more trip as I think we may be done for the summer…hubby's work will prevent a trip up in May (we think), and then we are blacked out for 2 months in the summer. Not to mention it's just so hot!!

    Pamela – How scary!! My first was born 7 weeks early & stayed in the NICU for 18 days, but we didn't have any surgeries or major health issues going on. Crazy sometimes what we look back on and see what God has brought us through.

    I have a wonderful quinoa tabouleh to post, and I really do hope to get it up this week. We are in the process of planning our 13 year anniversary trip (which we'll be taking this weekend…thanks MOM!) Our anniversary is May 3rd. It will be so nice to getaway together for an entire weekend ALONE!!

  12. Shaunells Hair says:

    Thank you for such an inspirational story. Trusting in our Heavenly Father is hard sometimes,but I'm sure he gave you that special little girl for a reason. What a blessing and a strength you are! Thanks for being a part of my blog, just wanted to say hi!

  13. ♥¸¸.•*¨Skip to Malou¨¨*•.¸¸♥¸ says:

    what a touching story… i am moved by your strength.. look ar your daughter now.. so beautiful and such a bundle of joy…. God is good indeed!

  14. Anita C. McCants says:

    Leah is a beautiful miracle. God bless you and your family.

  15. Davon Jacobson, Md says:

    Leah is a beautiful child. I am sorry to hear about this health issue. I hope all is still going well for you and your family. Keep up the great work with your articles and please stop by my health blog sometime. The web address is http://healthy-nutrition-facts.blogspot.com/.

  16. Chef E says:

    I do not know how I missed this post…

    I also had a daughter born with birth defects of the heart, congenital heart defects, Pulmonary artresia. I made so many friends in those hospital waiting rooms and saw what other were going through. I am sorry to hear you as well have to deal with this. My heart goes out to you, we all have our own personal experience, and it is a tough day to day life…

    hugs

  17. Kitchen Butterfly says:

    Oh wow. Having kids myself, I know how terrifying it must have been. I am SO glad everything turned out well. We have a lot to be thankful for.

  18. Lauren @ Delicateflavors says:

    What a precious girl and story! I am so happy that your daughter is well. God bless you and your family.

  19. My Little Space says:

    Denise, I'm glad your daughter looks great now! And thank you for sharing such precious story with us. May god bless you & your family.
    Best wishes,
    Kristy

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  21. Laurie says:

    Wonderful! Continued blessings for you and your family.
    Laurie recently posted..A Nice Surprise in the Mail

  22. Suzanne says:

    Miracles occur everyday and your daughter is living testimony to that! God bless her and your entire family! I’m glad she is doing well. Makes my heart soar with happiness!

  23. Leah is beautiful!! Thank you so much for sharing this story…I am so glad to hear that all is well!!
    Kate@Diethood recently posted..Double Chocolate Brownies

  24. Thanks for sharing your tender, sweet story. Two is such a fun age – enjoy! She’s beautiful!
    Barbara @ Barbara Bakes recently posted..Hershey’s Perfectly Chocolate Chocolate Cake and Perfectly Chocolate Chocolate Frosting

  25. Leah really rocked those helmets. What a cutie!
    Anne-Marie @ This Mama Cooks! recently posted..Best six ingredient dinners: Fish Veracruz {Blue Cash Dinner@6 $600 giveaway}

  26. Shelby says:

    A mother’s love for her child is so strong it is incapable of expressing it verbally. You are a strong mom which Leah needed….and it looks like she is a happy and strong little girl herself! I LOVE the photo with her thumb in her mouth! She looks so huggable!
    Shelby recently posted..Oatmeal Raisin Cookies for Connor

  27. Carolyn says:

    Oh, my heart just ached reading this, but then, I am so very glad all worked out well.
    Carolyn recently posted..Muskoka Peanut Butter Pie (Low Carb) – for Mikey

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  29. I’m so glad she is alright and blooming like a flower. She’s a beautiful little girl. Thumbs up for awareness!

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