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Dandy Walker Malformation

Updated on December 17, 2012

Dandy Walker Malformation

Dandy Walker Malformation is one of the toughest medical diagnoses for me. Although there are no definite answers our neurosurgeon will personally tell you, "It's one of those things where we see kids that come in and results are devastating, but on the other hand theres some kids that come in and you would never know what is going on with them." Dr. Troup- GHS

Dandy-Walker syndrome (DWS), or Dandy-Walker complex, is a congenital brain malformation involving the cerebellum and the fluid filled spaces around it. A key feature of this syndrome is the partial or even complete absence of the part of the brain located between the two cerebellar hemispheres (cerebellar vermis).[1] The Dandy-Walker complex is a genetically sporadic disorder that occurs one in every 25,000 live births, mostly in females.[2]

When I was Pregnant with my daughter we did the ultra sound every parent waits for. Is It a Boy or Girl? Well after the long debate between my mother and I, ITS A GIRL!!!!! After the ultra sound i was abruptly put into a room alone and was told that my baby girl was missing half her brain. Not only that but her heart wasn't functioning properly either. After holding myself together long enough to make it to the waiting room, I grabbed a hold of my mom and began to cry hysterically thinking this was the end for my baby. After discussing everything with the one person I completely trust we decided to begin a new path, To have the Strongest Faith there is today!

Of course everyday is a struggle, but today is a new day and tomorrow will be even better.

I will be Adding plenty of content to this page as I go!

Faith

God only throws mountains at those who can climb them. Keep your head up and keep moving!

My Daughter is AMAZING!

I have to say everyday is like walking through a dream. From what the doctors told us to expect with my daughter to what we see is so amazing to me. She is one of the smartest little ones I have ever met. Everyday I wake up and smile so big waiting for her to show me something new. It's as if she learns as she is sleeping and wakes up telling me all about it.

I had a friend tell me the other day, " What if God is speaking to you through your children?" To be honest, maybe he is because every time I look at them I cant help but smile and think I love them so much!

My little girl has become one of the smartest, most sassy two year olds I have ever met! But you know what? I Love it!

Just want to take a Poll!

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I am here for you. To lift you up from the harsh words that you have heard when you were expecting a happy moment. Those words aren't as harsh as they sound. Keep your head up. I will walk with you on this journey.

Update on Alexia

After deliberation, our neurosurgeon and our Sleep Doctor have decided to place a catheter into the Dandy Walker Malformation to drain it. We have developed some Medical problems that are causing several problems for my daughter. I am sitting in the hospital now with her as we have been in a room and out of surgery for several hours. She is still not fully awake and continues to vomit. I am praying that we wont have to go back in for another round of surgery because of a bad catheter but that is all in Gods hands. I will keep you posted with progress

Links that I have used for Research

Follow The links below to learn as much as I have!

Leave me some feedback or even a note to say hey!

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    • profile image

      orene75 5 years ago

      You are one of the strongest people I know. Praying God will pour out His Blessings on you for All you do for your children! I am so thankful to have y'all in my life. Hugs to you my friend!!!

    • profile image

      anonymous 5 years ago

      Thanks for sharing. At our 18 week ultrasound we found out that our daughter has DWV. While the diagnosis is good, we are still researching and reading a lot of stories like yours. We have also started a blog to share our story with others. Feel free to visit. www.dandywalkerhope.com

    • profile image

      anonymous 5 years ago

      Thanks for sharing. At our 18 week ultrasound we found out that our daughter has DWV. While the diagnosis is good, we are still researching and reading a lot of stories like yours. We have also started a blog to share our story with others. Feel free to visit. www.dandywalkerhope.com

    • AlexiaLynn profile image
      Author

      AlexiaLynn 6 years ago

      @CTsHeart: Thanks for the comment. I just want parents to have faith and hope for their children or future children. Many of my friends have come to me with questions because they had found out they were pregnant and didnt know if they could handle a special needs child. My motto is god wont throw you a mountain if you cant climb it.

    • profile image

      CTsHeart 6 years ago

      Thank you for taking the time to share your life and valuable information. God bless you and your beautiful children greatly!

    • jordanmilesbask profile image

      jordanmilesbask 6 years ago

      Be strong for God will not leave you nor forsake you...He is always be there no matter what...I'd been to a tough one as well but I just hold on to my faith and things had been better since then...

    • profile image

      NobleYaste 6 years ago

      I gladly add my faith to your faith daily, as you hear more about faith. I believe your faith will constantly be ever increasing faith!

      King James Version

      Romans 10:17

      So then faith cometh by hearing, and hearing by the word of God.

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