18 W Terminally Ill Daughter

76 Replies
dymond - April 22

my name is dymond, i am 18 and i have a 9 month old daughter how is terminally ill- she has been diagnoised with hyrdanecephaly, DI, and has recently beggan having spasms. she doesnt have a brain, only a brain stem. she is so beautiful but i am losing it worrying bout her. i need to knwo if theres anyone out there who has been in this situation or knows someone who has. i need someone to talk to. my baby girl is actually doing great and i couldnt be happier. but i was told she would be still born, then when she wasnt, was told that she wouldnt make it throught the first night, then when she didnt i was told not past 6 months but shes blown past all theyve said but still i know she got problems. is there anyone who has a child with this that is a healthy kid.......does she have as much hope as i belive she has? someone please help me......i just need someone to talkto.

 

Maureen - April 22

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.

 

Maureen - April 24

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.

 

MELISSA - April 25

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 acc_mulation 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 Inst_tute of Neurological Disorders and Stroke, National Inst_tutes of Health Article Created: 1999-03-17 Article Updated: 1999-03-17

 

KEEKEE - April 25

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!!!

 

D - April 25

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.

 

Maureen - April 25

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.

 

dymond - April 26

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 d__n 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.

 

KEEKEE - April 27

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!!

 

KEEKEE - April 28

Dymond there is a person called Michelle under pregnancy complication who has a daughter who is 9 years old with this illness. You may want to read what she said under Hydranecephaly. Take a look. I think she could be a lot of help. Her child is 9 years old!!!!!! Forget about that 1 year. I'm gonna leave a message for her.......Holla

 

MICHELLE - April 28

HI KEEKEE, I READ THAT YOU WANTED ME TO RESPOND TO DYMON REQUEST. I'M SORRY ABOUT YOUR BABY DAUGHTER DYMOND. BUT I TELL YA WITH PRAYER, LOVE AND THE STRENGTH THAT YOU HAVE YOU AND ELEXIS WILL BE FINE, THEY'RE FINDING CURES AND TREATMENTS EVERYDAY. HOWEVER I APOLOGIZE FOR NOT KNOWING MUCH ABOUT YOUR BABY CONDITION. MY DAUGHTER HAS HYDROCEPHALUS/ WHICH MEANS FLUID ON THE BRAIN(waterhead babies, as some insensitive people call them) HER CONDITION IS BEING TREATED WITH A SHUNT WHICH DRAINS THE FLUID FOR HER. YOUR CHILD HAS HYDRANENCEPHALY WHICH I WILL HAVE TO DO MORE RESEARCH ON. MY DAUGHTER HAS HER CHECKUP COMING UP MAY 3RD AND I WILL ASK HER DOCTORS ARE THERE AND SUPPORTIVE OR EDUCATIONAL WEB SITES THAT YOU MAY BROWSE. IN THE MEANTIME TRY BROWSING MOMMYGUIDE.COM. GOOD LUCK AND STAY STRONG YOU WILL BE IN MY PRAYERS AND THOUGHTS.

 

KEEKEE - April 29

Thanks Michelle, you are so nice. ......Dymond, How are you feeling today? How's that cute little girl?.....I'm hope everythings fine. Holla when you get time.........Smooches

 

dymond - April 30

to michelle,thanks for wanting to help. ive dont some research onlinebut it will check out that website. my daughter also has a shunt in, she got it whhen she was 4 months(3surgeries within thos following 4 weeks) i have tried tlaking to her dr.s but they talk to me as if i dont understand what she has. i guess the fact that im a teen mom plays a big part in how they see me at times. and keekee, i do have some help, not much but its something. my mom trys but shes soo nervous about watchng her becuz she has her times when she willl only calm down for me, and sh gets too worked up at times then she stops breathing completely and mom freaks out and me on the other hand knows how to calm her down. i do go up to orlando once a month-about 2 hours away-and my cousin thats a nurse at a nicu watches her those weekends and lets me go out during the day nd get some time to m self. sorry i did not get to respond last night, we had to stay at the hospital but no alarm, just for a test which gave me good news-we had a EEG done and there were no signs of siezure activity going on. but i do have one question if there is nyone that can answer this-ive seen cts scans showing extremely little amount of brain so how is it that this test can be done? i was told it tracks her brain waves and patterns with in? well, duty calls once again, ill be back later tonight. and kee kee, if u wanna send me something to my email or im me if your online to sn-dymondcolon, or [email protected] and ill send you a pic!!!

 

Carleen - May 2

Dymond - Please know that the love and prayers of many, many moms out there are with you every day!!!!! The Lord only gives us what he knows we have the strength to handle and he obviously trusts you an awful lot to give you so much. Your daughter is very lucky to have been born to such a person as yourself. Stay strong!!!! God Bless!!!

 

KEEKEE - May 2

Sorry Dymond for the delay. My son has EEg on regular basic too. He hates the hosptial. He use to scream when we pulled u to the door. Now he's getting better.....I was 20 when I had my son. Doctors are like that. Some doctors are rude and impaitent. It has nothing to do with age.If you don't like a doctor change him or her. Always feel comfort with who is treating your child. Never feel like you have to put up with rude people......Well, I have a hard time leaving my son too. People don't understand how much pressure you are under.It is good that you are taking a break.......I pray for you and your little girl every night. It is so nice to talk to you. I'm gonna try to email you later. If you don't get a email, look for it tommorrow....Oh, what happened during your pregnancy?? Did your pregnancy cause your health problems now?? Do you have HELPP?? Just wondering...........Smooches

 

Maya - May 3

Hyrdanecephaly, as she quoted, is a real disease. She just spelt it wrong, people have a heart.

 

hag - May 4

Dymond, I have 5 children (all adopted) with hydranencephaly. It is not really rare, but more uncommon. The old myth that they die by one year is just that, a myth. Mine are 9, 5, 3, 2 and 2 months. I know people who have children with hydran who are in their twenties! Most people think a child born without a brain is merely existing, but they are so cool, they have personality, they are happy, they cry, they laugh, they learn... not like other kids but they do learn. They have a life! Feel free to IM or email anytime. My name is Karin and my address is [email protected]

 

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