Holoprosencephaly

Holoprosencephaly is a birth defect in which the forebrain does not properly divide into two hemispheres as it should.

A child born with holoprosecephaly will have a single-lobed brain with severe defects of the skull and face. Babies with this condition have abnormalities of the eyes, nose and upper lip. Because of the severity of deformities that holoprosencephaly causes, most babies will be stillborn or die shortly after birth.

There are three types of holoprosencephaly. Alobar holoprosencephaly occurs when the brain has not divided at all and is the most severe type. A baby that is born with alobar holoprosencephaly might experience cyclopia, a single eye that is located in the center of the face and the nose is generally missing. The child could also suffer from ethmocephaly, in which there would be two very close eyes that were separated by a tube shaped nose.

Semilobar holoprosencephaly occurs when the brain has partially divided and patients will have experience a moderate degree of deformities. The child could be born with a small, flat nose that only has one nostril and underdeveloped eyes. Lobar holoprosencephaly occurs when the brain has a good amount of separation and is the least severe. Babies with this form are generally born with a cleft lip.

There is no cure for the deformity and survival depends upon the severity of the deformities.

Comments: Holoprosencephaly
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turtlemom - 871 days ago.
Hi Navywife, I am friend's with Janice55/Megan's Mom on Facebook. Megan is very precious, thriving and is almost one! I can probably connect you with her if you want to send me a private message.

navywife81803@yahoo.com - 871 days ago.
Hello, I had my 20 week ultrasound with my 4th child and was told that she has a fused brain, cleft lip/palate, and abnormal eyes. They did an echocardiogram on the babys heart right away and an amniocentesis on me. The amnio came back as normal and there is nothing chromosomal or genetically wrong with her. They are now thinking it is holoprosencephaly. They say she will have zero chance of survival but I want to be positive. They gave me the option of medically aborting her but we chose to continue the pregnancy no matter what happens. Anyone with this issue please feel free to write me or comment back. Thank You.

janice55 - 1166 days ago.
hey... just an update on my baby girl... Megan Hope was born on the 11th feb 2010!!! shes now nearly 4 weeks old and doing good considering all her problems. she was very weak when born and we thought she would pass but my little fighter shocked us all by getting stronger with each day, shes now at home with us and feeding well on bottles!!! as for the future we still dont know how megan will progress or how long we will have her with us (the doctors say our time wont be long) but were taking everyday as it comes....loving her to bits. shes amazing!!!! my precious sweet heart xxxxx

MommyOf3But4ToBe - 1224 days ago.
Janice, here is another website for you... It has a tone of information, and even info on the families with children going through this... Take care and GOD bless... http://www.holoprosencephaly.net/Holoprosencephaly

turtlemom - 1256 days ago.
Hi Janice, I know it isn't quite the same condition, but I ran across this amazing family and little boy: http://winkfromheaven.blogspot.com/2004/09/were-having-little-boy.html. He has Hydranencephaly.

janice55 - 1261 days ago.
thanx ladies.... this site in itself is a world of support. crazy how people (strangers) can come together for support. i wish it was the least serious category my little girl fits in to but it the middle one and its at the most severe end of that... she has a cleft lip and palate also along with severe malformation of the brain....she will not have a 'normal' life and will suffer great disabilitys. having met with a doctor thats going to be treating her when she is born has told us its going to be a case of making her as comfortable and pain free when she comes instead of prolonging the inevitable... all we can do is give a lifetime of love in to a short few hours? days? weeks? and just nurture her and cherish her. i cant wait to meet her but as far as saying goodbye goes i dont think theres anybody that can prepare for that.... its just so sad and heartbreaking

klderoos - 1262 days ago.
All the best to you and your family Janice, all of my thoughts to you.

Chazoos - 1262 days ago.
Hi Janice, I saw your post as well as Sara did and I must say I didn't know what it was til I read up about it. I really do feel for you. xxx

saralou - 1262 days ago.
Hi Janice, I am really sorry to hear your news. I just noticed your post when I was checking mine. My baby has a single vessel cord which is not serious in most cases so I feel very lucky. I had never heard of holoprosencephaly until I saw your post, so I have no experience to share with you - I just wanted to offer my support, since you were the only poster on this thread. I did a little research and it did say that the condition could be mild to severe, so I really hope that your little one falls into the mild category and thrives! I found a website with lots of information – if you haven’t already found it, here it is: www.holoprosencephaly.net I lost twin girls in 2007 and it turned my world upside down, so I understand how it feels to have all of your hopes and dreams put in jeopardy. It is funny when things get bad how we somehow find the strength to cope. It is not nice, but we learn to deal with it. Thinking about you. Sara

janice55 - 1262 days ago.
my baby girl has been diagnosed with semi-lobar holoprosencephaly.... im 25 weeks pregnant at the moment so its devasting thinking whats ahead.... it must be bad that im the first to leave a post on this board... we just have to wait and see whens shes born how she will cope outside the womb as she feels so strong inside and really moves around and kicks....its a tough time but im ready for the road ahead and ready to deal with everything coming our way....xxx