FAQ • Hydranencephaly

FAQ - Hydranencephaly
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i found out at 19 weeks that my unborn daughter has a terminal illness?

well, i had my 18 to 20 weeks scan, and was told there was fluid on my baby's brain and heart, she also just has 2 vessels in her cord instead of 3!
i was sent to sydney 4 days later for a level 2 ultrasound where the Specialist diagnosed her with hydranencephaly ( feel free to look that up)
she will be severely disabled mentally and physically, and they had given me the option to induce labor and "let her go" or to continue with the pregnancy, i didn't need to think about it much, as i really don't want to be the one to decide if she goes or not.. that i believe is up to god!
anyway she may not survive birth, or she may live to be 2 years old!
alot of cases have lived into there teens as well! many doctors are not educated on this condition as it is sooo rare! so telling me when she will die is like trying to predict the Future!
so do you think i should still have a baby shower? i know you all will probably say its my decision.. but what would you do? and how would you do it?
im still going to get excited for her, as she is my daughter and is still coming into the world!

your opinion would be greatly appreciated...
by the way.. i am now 21 weeks pregnant! ( i feel her kicking everyday ) i love her so so much!
i just thought i had to add that her condition means she has no brain.. or a large part of it is missing.. and it is replaced by fluid..
so no.. she wont live, and no child has ever lived with this condition :( thankyou for your concerns. but there is no miracle her.. just my daughter :)

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You believe that it's up to God when she dies, right? If I were you, I would start praying, I mean, miracles happen, God does heal...so instead of thinking or believing the doctors, believe in the saving power of Jesus Christ - I know God can heal her......please, you must believe without doubting, and keep praying......and if I were you, I would still have a baby shower......why wouldn't you? Don't go through life as though your daughter is dying, go through life believing she will survive, that God is greater than all of this =D

She deserves to have a baby shower, she is no different than any other baby - celebrate her life!!

Congrats, and I will be praying for you and your little girl!! (+ info)

very worried and need advice?

hello,
i am currently pregnant with my first, she's a little girl and her name is Mia! i am now 37 weeks.
at 19 weeks Mia was diagnosed with a rare and fatal condition called hydranencephaly, this means she is missing a large portion of her brain, and it is replaced by spinal fluid, she will be severly disabled, and her life expectancy is just 2 years... so now you know abit about my daughter and her condition, i will procede to ask my question...

as she is severly disabled, i have to have her in a bigger hospital in the city so she can receive the special care she needs! i go down in 1 week at 38 weeks to stay in the hospital untill the 25th, if i do not go into labor on my own by the 25th, the specialist will induce me on that date!
anyway, there is a big chance that they will whisk her away as soon as she's born :( (if she is having trouble breathing) and even if she does come out breathing well, they still have to take her away for an MRI and CT scan, then i think they will take her down to NICU,
ok with the question, lol - i am worried other family members will get to hold her and bond with her first, before me, as i will be recovering!! this is going to sound very very rude, but i'm not sure i want any one to visit her untill i get the chance to have my first cuddle, i know when she gets whisked away, i want my partner to go with her, or my mum, but the thought of someone else connecting with her before me is to much to bear!! what can i do?? is there someone at the hospital i can make this request to? does it sound harsh that i want the chance to cuddle my precious sweetie before anyone else?? is there a way i can ask the specialist to keep everyone out of NICU untill i get my alone time with her??
what would you do??? thanks in advance everyone! xx

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God bless you and your beautiful Mia! Thank you for sharing your story with us. Please have no guilt about the way you feel, after all, you are the one that has been doing all of the carrying so far :) you deserve to get in your special time! When you get to the hospital you will be able to speak candidly with the nurses and doctors who will eventually be delivering precious Mia. Tell them you want to have her immediately into your arms after delivery if only for a brief time before anything else if it is possible! of course, you know, if she is having breathing trouble it is not possible. but you may find out that a fleeting moment before CT or MRI is possible and that may make you happy enough to allow her to have immediate contact with another family member, as I feel that this immediate affection is important to all newborns. In other words, maybe, for HER sake and comfort, you could allow someone else to hold, snuggle and bond with her if you have even a few seconds immediately following delivery. Just my opinion. I believe in this so much so that after my son was delivered, and the midwife "caught" him I took him in my arms and to my breast immediately... no cleaning, no cutting the cord first, nothing. just he and I skin to skin. nothing has ever felt better! Good luck and God bless you and your little Mia. I'll have you in my prayers and thoughts! (+ info)

Songs for baby's funeral.?

My little boy passed away this past Sunday, his funeral is on Wednesday and I'm creating a playlist specially from me to him to play at the viewing. I have a lot of good songs already, but I was wondering if anyone had ideas for any more?

Liam Carter is his name, he was born February 28 of this year, six weeks early. He was born with a life limiting condition called hydranencephaly, the most severe form of hydrocephalus (water on the brain). All water, no brain. He was living off of his brain stem. Most babies with the condition the plates in their skull don't fuse together so the spinal fluid just keeps making the head expand. Obviously there was nothing they could do for him. The neurologists told me to expect ANYTHING and take him home, make him comfortable and love him a lot. That I did :]

The plates in Liam's skull did end up fusing together and basically the pressure killed his brain stem and caused his body to shut down. He put up a three day struggle.

I know I don't seem very mournful at the moment, but really this is a way to distract myself, so I would appreciate any songs that you have in mind.

So far I have:
Sunshine On My Shoulder- John Denver
Beautiful Boy- John Lennon
Don't Want To Miss a Thing- Aerosmith
Call On Jesus- Nicole C. Mullen
You'll Be In My Heart- Phil Collins
I'll Be The One- Backstreet Boys (odd, I know)
Somewhere Out There- Fievel singing
Little Star Sweeper- Darling's lullaby from Lady and the Tramp
Every Breath You Take- Sting/Police
Softly and Tenderly- Amy Grant
How Do I Live Without You- LeAnn Rimes
Heaven In Your Eyes- Loverboy
Baby of Mine- from Disney's Dumbo (when his mama is rocking him after she gets locked up)
Tears In Heaven (Eric Clapton)
Open Arms- Journey
I Could Not Ask For More- Edwin McCain (my special song to him)
Keep in mind with the songs that I'm sixteen.

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I am so, so sorry for your loss. I can't imagine how you must be feeling, and my heart really goes out to you.
You have chosen some really beautiful songs, and the 2 that came to my mind straight away are 2 that you already have listed.
TEARS IN HEAVEN ~ Eric Clapton
BEAUTIFUL BOY ~ John Lennon

I also think Israel Kamakawaiwo's version of SOMEWHERE OVER THE RAINBOW is absolutely gorgeous....maybe a beautiful song to play if you release balloons into the sky?
http://www.youtube.com/watch?v=D68ymfjpw98

My heart and thoughts are with you and your family at your very sad loss. Your baby boy Liam sleeps with angels now.
((hugs)) (+ info)

how can people be so heartless?

hi!
i am 23 weeks pregnant and at 19 weeks pregnant my unborn daughter was diagnosed with a condition called hydranencephaly, meaning she has no brain ( she has a brain stem though) and the missing brain is replaced by fluid! i was told she would never live past infancy, and that she wont know who i am or love me!
so i asked a question in religous catergory, asking if they beleive in an after life for my daughter, and and if they think she will be disabled in heaven, and will she love and know me???
and i didnt even get one nice answer! one person called me a troll and said if i am not musilum, i will never see my daughter again, there will be no place for her in the after life. another said she was a nurse and didnt beleive me that a doctor would tell me that my baby wont love me.. ( by the way i beleive she will love me)
my question is how can people be so cruel and heartless? im now bawling my eyes out! i really didnt expect answers like that! and i feel stupid for asking such a personal question like that!
danny d- your answer made a lot of sence! it really helped answer my question :) im sorry to hear that your having trouble, it took me 2 years to conceive my beautiful girl! im sending loads of baby dust your way! xo

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Some people are just jerks. My step sisters granddaughter gave birth to a boy who has the same condition as your daughter has. I have never met him (we are 1000 miles apart) but from what my sister says he is a loving sweet boy who cannot talk or say what he wants but has his own way of communicating. He is now almost 4 years old and wasn't expected to live but just a few weeks after birth. He will never be "normal" but his mom and dad and grandparents love him just as he is and he gives love in return.

Good luck to you all (+ info)

very worried and need advice?

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(+ info)

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