Encephalocele.

Heather - posted on 10/18/2009 ( 9 moms have responded )

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My baby has been diagnosed with occipital encephalocele, the whole occipital lobe is contained inside the encephalocele. The outcome does not look good. They tell me she may not be compatible with life and that they will do everything to make her comfortable. Was wondering if there are other parents out there finding themselves in my shoes or have been there. I am finding i am having a hard time with this. Plus she also has 3 holes in her heart that are fixable. I also have a 5 yr old daughter and a 2 1/2 yr old son, how do i explain to them that their sister may never come home?

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Whitney - posted on 01/19/2016

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So I'm 19 weeks pregnant and just found out my baby has this and she has a hole 3/4s on the back of her head and she has a hole in her heart. Can someone explain to me what you guys did or would do to get through this? They said there's a chance my baby won't make it either during the pregnancy or after.

Anne - posted on 07/24/2014

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For anyone who finds this through a web search, there are a number of us who have formed a facebook group called Encephalocele Mommies and Daddies. We provide peer support to those dealing with this diagnosis. And feel free to find me at my blog as well, and read my son's encephalocele story @ http://musemama.blogspot.com

Debbie - posted on 05/04/2014

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I understand that feeling of devastation after finding out the news in 2004 that my unborn son had a major brain defect: a large Occipital Encephalocele and Hydrocephalus. I think I walked around in a daze just weeping off and on for days after finding out the news. I remember desperately searching the internet trying to find out information on the diagnosis and finding very little information from people who had babies with the same diagnosis.
My heart goes out to each of you, and I want you to know that God did a miracle in my son. He is a bright, loving, normal 9-year-old boy today. I decided to create a blog about my son, Nathan, to give hope and information to those who are searching. I have included pictures of my son after he was born, after the surgery, and how he is doing today. Please feel free to email me to ask questions or even for prayer.
My email address is: debbievalentine03@yahoo.com
My blog is: fivemonkeysmama.blogspot.com

Teresa - posted on 04/01/2014

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i see this is an old post ive just joined this site, im 19 weeks pregnant and have been told my baby has an encephalocele. al i no is its covering 2/3rds of her head. im just wondering if ur still using this site would it be possible if maybe you could give me any advice. i do so hope with all my heart that ur baby is still with you.

Heather - posted on 10/20/2009

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Im only 26 and 1/2 weeks pregnant. She not here yet, all this is found out through MRI and ultrasound. Im expecting a call from a Pediatric Neurologist tomorrow, hoping he can answer my questions. Not sure i really want to know but I want to be prepared for when she arrives.

Katherine - posted on 10/18/2009

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http://www.upmc.com/Services/minc/condit...

http://www.homeoint.org/hompath/articles...

http://www.ninds.nih.gov/disorders/encep...

articlesbase.com/diseases-and-conditions-articles/c...

brainsurgery.upmc.com/conditions-and-treatments/encepha...

I found these, some are links the others are the site address. I'm sure you know this already though.



The only reason I included the homeopathic one is that I've heard colloidal (silver) is an almost perfect antibiotic

Monica - posted on 10/18/2009

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I haven't been there, but this sounds terrible, so Im so sorry, and hopefully you can rescue her somehow, dont give up looking for your own research and looking for opionion of other doctors if necesary. Take care, and I'll pray for you and your kids.

Katherine - posted on 10/18/2009

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I haven't been there, but that's horrible. How old is she? I have a 7month old.......that must be so hard. Have you researched it a ton? Ruled out EVERY option, gotten second, third, fourth opinions? I'm so sorry Heather, I will definitely keep her in my prayers.

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