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Hi Dymond, I did some research on ANENCEPHALY (hyrdanecephaly). I also came up with nothing.With a little more surfing, I found anencephaly. A harmless misspelling of the diease. Anencephaly is a defect in the closure of the netural tube during development. A baby born with this disease is normally blind, deaf, and unconscious. Most babies are stillborn......I am a mom of two kids. My oldest lost oxygen at birth. I was told he would not live until age 4. It saddens me to hear about such a story like this........The problem is the babies that have this diease don't live pass a couple hours after birth. You're story is so hard to believe. I looked this disorder up and every story has the same ending...The baby don't live pass a day.......I hope this story is not fake because God don't like ugly!!! If this story is fake, You are a terrible person to try to use our emotions to get attention...Ask your mom or dad for that attention because this is not the way to get it. It is wrong to post such a question like this..Someone out there is suffering and is of need of support but is not getting help because of Questions lke this. People is having a hard time taking questions seriously because of immature people like you. Please get some help. Believe me, We cannot help you!!!

Hi all, but do you think that perhaps she may not be making up this story and her baby is the exception to the rule? There is always that possiblilty. What do you think?? In either case, it dosn't sound good, does it.

i have half the mind to cuss the crap otta you ppl who didnt have decent knowledge capabiliy to complete a simple search but you arent worth my words.....now to keekee- i know hat my daughter has and it isnt misspelled. my daughter cant read the shit the books say therefore shes not word for wod what is in there. not everycase is what the books says-as a matter-a-fact most babies live up to 6 months but not much longer key word most babies. my baby girl is a exception o this as are many others.unless youve walked within my shoes and lived my life i feel youve got no right to say im taking help from others who need it considering none of you so far did nothing but fail to complee a search and accuse me of soemthing a as well would find disturbing if i was indeed a lie. if any of you are no help to me keep your answers to yourself. as i said b4, if theres anyone who can say they knw what im talking about please respond.

That is what I thought, why would somebody lie about their health?? I know many different health cases children included, with special exceptions etc. Things happen and that's the way life is. I think you are doing very well Dymond.

Ok, STILL A MISSPELLING OF THE ILLNESS!!!!! HYDRANENCEPHALY is the right spelling!!!..Like everyone else, I looked up the word hyrdanecephaly( your spelling, hon) and got nada!!! The rays of sunshine website took me to herbal vitamins site..Thank you!!You mean Hydranencephaly.com,,,,,,,If you read my comment, it said IF YOU ARE LYING, I hope this is not a joke!!!!..I even tried to help out since I have a child with special needs who was not suppose to live...Honey yoou are mad at because you didn't put dont the right spelling of your child illness. I also answer questions like this one because I'm there. PLEASE make sure you have the right spelling before posting a question or otherwise people is going to think, its so silly teenager again......Ok, I going to try to help you anyway. Even though you aimed you're comment toward me..I know your situation can make you mad. Thats ok, I had my days when I was mad at the world because of my son"s health. I know you are asking "why me"???........My son lost oxygen at birth and wasn't suppose to live until age 4. He is now 9 years old. Doing very well for someone in his situation....Well, it sounds like you love that strong little girl. Wow, she's now 9 months old!!! You must be doing a good job trying care of her.....I wish I know more about this, but I don't. The only advice I can give you is to love her no manner what. Take her to the specialists( doctors) that can help. Make sure you write everything down and ask a lot of questions about hydranencephaly.......I'm hear to talk. Good Luck

Dymond, Sorry about some of my misspellings..lol...I have tired mom's disease...hee..heee....

HERE IS WHAT RESEARCH TURNED UP WHEN I DID A GOGGLE SEARCH..............

Hydranencephaly

Hydranencephaly is a rare condition in which the brain's cerebral hemispheres are absent and replaced by sacs filled with cerebrospinal fluid.

An infant with hydranencephaly may appear normal at birth. The infant's head size and spontaneous reflexes such as sucking, swallowing, crying, and moving the arms and legs may all seem normal. However, after a few weeks the infant usually becomes irritable and has increased muscle tone. After a few months of life, seizures and hydrocephalus (excessive accumulation of cerebrospinal fluid in the brain) may develop.

Other symptoms may include visual impairment, lack of growth, deafness, blindness, spastic quadriparesis (paralysis), and intellectual deficits.

Hydranencephaly is considered to be an extreme form of porencephaly (a rare disorder characterized by a cyst or cavity in the cerebral hemispheres) and may be caused by vascular infections or traumatic disorders after the 12th week of pregnancy. Diagnosis may be delayed for several months because early behavior appears to be relatively normal. Some infants may have additional abnormalities at birth including seizures, myoclonus (spasm or twitching of a muscle or group of muscles), and respiratory problems.

There is no definitive treatment for hydranencephaly. Treatment is symptomatic and supportive. Hydrocephalus may be treated with a shunt (a surgically implanted tube that diverts fluid from one pathway to another).

The outlook for children with hydranencephaly is poor. Death generally occurs before age 1.

Information provided by the
National Institute of Neurological Disorders and Stroke,
National Institutes of Health


Article Created: 1999-03-17
Article Updated: 1999-03-17

Dymond, I know the outlook don't look good. Don't never give up!!! Most people couldn't handle what you going through. You love your baby regardless...I also didn't have a good outlook for my son. I cried and wondered why me. I counted down the days and tried to make the best out of what was going....Do you have the child's father with you?? Or any family support???? I hope you do. SO, when you get time please let us know how you doing.......I know we got start on the wrong foot and you took my statement wrong..I just wanted to say I'm here if you know someone to talk to...Hell, I might be able to bring a smile on your face....Holla Sweetie!!!

Dymond - I read your post on the 22nd, and I'm very sorry I didn't respond then - I might have been able to say something that would have prevented the harsh comments you received. I didn't respond because you obviously need support... I quickly researched your daughters diagnosis online... being the kind of person who tends to focus on hard cold facts, I realized that the facts are not what you need right now - you already know them. I don't know any way I personally can help you. Beyond what the doctors and specialists say, only thing that I know of that can be done is to love your little girl every day that you have her and pray. Your situation has touched my heart, and I pray for strength for you to deal with whatever happens.

Dymond, have you read that the people are sorry about what they had said to you earlier? If you read this, Please respond, I'm curious what you think. Thanks.

thank you for everything, everyone.i just about had it with ppl who would think i lie about this. i get it all the time and i am fed up with ppl who dont keep in mind that there are ppl who really do have to deal with this daily. now keekee, i apoligize as well...but i didnt say rays of sunshine was the website i said search that cuz i wasnt sure what the exact website was. but leave that all behind us....im jus glad its known im not full of it. maureen-sry i didnt respond sooner,lol, duty was calling me. i dont have her father with me, he left when i was 5 months preg,when we found out the devistating news. but,hell,im doing damn well without him. i have family support kinda now. i jus hate feelin like im the only one out there sometimes. i try m best but i jus need someone to talk to about it, someone who will say its ok to cry and be lost and scared outa your mind. i know my baby girl lives off my strength as well as her amazing will to live so i try to be as strong as i can but i jus slip sometimes and feel the need to know that i am understood.

No problem Dymond!!!! I probably just read your post wrong. Sometimes I be on my labtop and my 1 year old like to beat on the keyboard. So we be in a tug of war and I have to be fast when typing and reading......Wow you are so strong for a 18 year old. I was not much older than you when my 9 year old was born. I was 20 years old. Yes, I maybe a old lady to you but I have so wisdom that might help out. I am sorry to hear about your boyfriend. Some men are immature and an asshole. Its his lost not yours. He will miss out on knowing such a special person. He can never bring back those beautiful months with your little angel.....Enjoy that baby. I see you love her more than anything..It is so hard to say this without crying. It brings back memories. Your little girl is meant to be here. God must have plans for her and you. HE would never give you too mush to handle. I can already tell you are a good person. Live day by day. Make everyday she live a celebration.(I have been doing that for 9 years) Love her and don't forget to love yourself. Ask for help....I know you are probably back and forth to the drs. I'm here!!! Let us know what happening and thank you for responding...........I will be praying for your family.....God bless

it does get hard at times but you know ihear ppl that have a child that is as some put it "normal" but trat them like shit and say its so damn hard to care for a child and i understand that some have a hard time dealing with children but i have a beautiful angel that has some big preoblems and i dont think that its all that hard to be honest. i mean emotionally i lose it at times but from fear. she is a good baby-she sleeps through the night and everything. now that im nearing that one year mark my mind is steady with the what ifs and i know that even though i have been told she will not live past 1 year i know in my heart that she will. she has proven evry dr wrong so far. thank you for taking time to talk to me, i cant express enough how it feels to be able to come on after shes out for the night and have some one ask how my day was or what ever. thank you.

I know Honey, it is very hard. It is funny, when you going through this see notice the way people treat their kids. While you crying over your kids health, those people are complaining about the smallest things. Man, It took time for me to understand that some people have major issues. Those people couldn't handle being in your or my shoes. Thank God, they don't have a child with special needs......I also call my little ones angels. My oldest has been through so much. our second home is Children's Hospital. The back and forth to doctors is hard, but is worth it. That is how I look at it........I know how it is to be judged. People would look, when they notice he don't walk or talk well. I got use to it. You will to. I learned to keep my head up and pray for understanding and support. I didn't have much support. Everyone was worry about themselves. You know what I'm talking about. Its sad...You would think people would do anything to help but instead some people are negative. I have learned to stay away from negative people. Yes, I can be longly. Try to keep postive people around you. You don't need people putting you down . Believe me it works....Every year my son got older, it scared me. Then I decided I was blessed to have him every year he is here. You are so blessed and loved. Your little girl is so lucky to have a mommie like you. Please keep your head up. You all ready Doing a good job, so keep it up...I here in the mornings. I will try to chat when the kids go to sleep.........I hope you are doing better today. Let me know...........Holla back sweetie!!

well im doing ok. we had appointments today-the both of us. hers as great, but of course we were told more test are coming up since shes getting to that 1 year mark but as far as i go, not as well. i had alot of problems with hypertension -i started going into labor 4 weeks before i actually gave birth and i had slight seizure activity during labor and since ive had alot of problems with my blood pressure and its up again. but on the other hand i know what you mean by noticing how others reat their little ones. i even see ppl with their kids in the offices that do have disabled kids and treat them like its the kids fault-i cant explain how many times i had to up and leave he room cuz i was so upset and pissed at the ignorance of some ppl. i have realized that everyday that passes with my little girl is a gift and i try to ask my self everyday what did i learn to day? i beleive god gave them to us like this for a reason, to teach us of the strength you have and the miracles of life. and my god shes taught me so much. and i hear ya on the shit about ppl looking at u or ur kid diferently. i swear soemtimes i just wanna take some ppl out with some of the negative shit i get at times. i was actually at the mall once like 2 wks ago and an olderly woman asked how old elexsis was and i said 9 months and she gave me this disgusted looked and said dont you knwo that as her mother you should teach that lazy bbaby to hold her head up- she should be walking alone by now!! and walked away.....bu i try not to let things like that get to me.well duty calls.

That old Bitch should have been cussed out!!!! I have never seen a 9 month old walking. It is none of her business. People amaze me with their stupid comments......When my son was 7 years old, My hubby and I took him out to eat. He don't know how to hold a fork and I was feeding him. This old( bitter for being old) couple kept sharing and shaking their head. Had the nerve to say" He should be eating by himself" I said "Mind your fucking business" and they left. My ex family said I didn't want him to walk. I have a temper and a nasty mouth. I throw her coat off the window and said get the fuck out of my house..That was the last time she seen my son at age 2. She didn't see him again until age 4 when he was hosptalized...I try to keep negative people away from me.....Some people don't understand how a negative comment can make things harder on you..The problem is when you look at my son, you can't tell there is something wrong. He's beautiful. I guessing that is whats going on with your daughter. People can't tell. I bet she's beautiful. You are so lucky to have her. My son taught me how to love no manner what. He is prefect in my eyes...........Elexsis is a beautiful name for your little angel. I love names that not everyone would have. My boys names is Avery and Jordan. My sweet angels. Jordan was born at 32 weeks. He's grown!!!!..................I am sorry to hear about your health problems. It will get better in do time. I had health problems after pregnancies too. I had preeclampsia. So, I know high blood pressure is serious. Try to relax. Do you have anyone that can help you out???? Your mom or dad. I just wish you had more support......My guys want more cookies!!!!! I'm out!!!!!................Smoochies!!!!!