Do you know anything about semilobar holoprosencephaly?

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My pregnancy ended at 5 months because I was diagnosed with this. The baby had only half a brain and severe deformities. My heart aches so bad that I can't stand it. Does anyone know if this is genetic? I would love to talk with someone else in a similar situation. This just happened last week. I do not think I will ever be the same again.
Time will heal the open emotional wounds, though you will always have a special part in your heart for the pregnancy you lost.

I worked in the field of developmental disabilities for twenty years and experience thru family and work the heart aches, joys and frustrations of having a special needs child. The term you want is holoprosencephaly,the failure of the prosenceplon section of the forebrain (the part of the brain).
Go to www.wedmd.com and you will be able to read on the diagnosis, which I believe applies to the baby rather than the mother.

Contact your local health department and ask who in your state does genetic studies? The geneticist can answer your questions and do the medical studies to help you determine if there is a genetic issue that will help you to decide about having a baby.  (+ info)

has anyone had an ultrasound show up as a holoprosencephaly and it end up wrong?

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I had an ultrasound yesterday and went into the doctors today to be told that it looks like my baby has brain abnormality called hpe where the brain did not divide properly or they cant see a cavum septum pellucidum...has anyone had an ultrasound like this just to see a specialist and it end up being wrong? They are telling if this is it my baby wont survive.
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what happens to a person that only has one big lobe of a brain it's called holoprosencephaly?

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the brain dosen't divide into right and left
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What is the chance of having more then one child with a neural tube defect?

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I lost baby at 18 weeks gestation due to semilobar holoprosencephaly. The doctor said that the likelihood of this happening again is very low. However, I have done some independent research and am concerned that it may be a genetic issue.
neural tube defects are not genetic in origin,. they are caused mostly because of folic acid deficiency.
thats y during pregnancy, the doctors ask the pregnant women to take iron and folic acid supplements.
so suring ur next pregnancy, take those tablets and go for prenatal checup regularly...  (+ info)

anyone have a child with holoprosencephaly, are they living, if not how long did they survive?

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They have a support group http://health.groups.yahoo.com/group/holoprosencephaly/ in the yahoo groups under health with pictures.
God bless!  (+ info)

what is alobas holoprosencephaly?

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it is not alobas...it is alobar. it is basically a disorder which occurs due to malformation of the brain while the fetus is growing. a more scientific overview is what follows.
Holoprosencephaly is a disorder caused by the failure of the prosencephalon (the embryonic forebrain) to sufficiently divide into the double lobes of the cerebral hemispheres. The result is a single-lobed brain structure and severe skull and facial defects. In most cases of holoprosencephaly, the malformations are so severe that babies die before birth. In less severe cases, babies are born with normal or near-normal brain development and facial deformities that may affect the eyes, nose, and upper lip.

There are three classifications of holoprosencephaly. Alobar, in which the brain has not divided at all, is usually associated with severe facial deformities. Semilobar, in which the brain's hemispheres have somewhat divided, causes an intermediate form of the disorder. Lobar, in which there is considerable evidence of separate brain hemispheres, is the least severe form. In some cases of lobar holoprosencephaly the baby's brain may be nearly normal.

The least severe of the facial anomalies is the median cleft lip (premaxillary agenesis). The most severe is cyclopia, an abnormality characterized by a single eye located in the area normally occupied by the root of the nose, and a missing nose or a proboscis (a tubular-shaped nose) located above the eye. The least common facial anomaly is ethmocephaly, in which a proboscis separates closely-set eyes. Cebocephaly, another facial anomaly, is characterized by a small, flattened nose with a single nostril situated below incomplete or underdeveloped closely-set eyes.  (+ info)

Please I need to hear from someone who had to end a pregnancy for medical reasons?

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I was part of the January Due Date Club and last Tuesday at 18 wks my baby was diagnosed with semilobar holoprosencephaly. She had only half a brain, heart problems and other deformities. Chance of survival was 0%. I had to have a medical induction, as her she had water on the brain and it was causing her head to swell. Emma Catherine was born alive and we had the chance to hold her and kiss her for an hour. Then she went to God. My heart aches so badly and I want to be pregnant again so bad that I can't stand it. Has anyone had a similiar situation? I feel so alone. Is it normal to feel this way? What should I do?
I have never been in your situation but my heart and prayers go out to you and your family.
I have worked in a hospital before and I've had friends who have lost babies. My best advice is to find a support group in your area that deals with neo-natal loss. Most communities have some sort of grief-loss support group. I bet if you call your Dr. or the hospital where your baby was born they will have some information for you. If you can't find a group in your area, please at least seek counseling through a therapist or a church. I know there are other parents out there just like you who are dealing with this heartache. I'm sure hearing their stories, and telling your own story, will really help you in the grieving process.
Good luck and God bless!  (+ info)

if you know what holoprosencephaly is and spina bifida is you might want to help me?

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my sister had these things along with other stuff that are to big for me but iv seen pics of kids with this and did not look the same she looked normal but she was so small but not small enough to be a dwarf she was four when she died and was wearing size 2t clothes why was she so small and why did she look normal instead of like the other kids with her conditions i was only 6 but im still left confused i tried asking my parents and they don't like to talk about it why did she live to be four but was expected not to live past a year and she was supposed to be a "vegetable" but showed emotion i guess doctors are wrong
What doctor House said about Spina Bifida is not true there are varing types of SB Myelomenigcile is one of the most severe,people with SB are living up into adult hood yes some have major issues such as shunt failure or tethering of the spinal cord some can walk while others are "wheelers" (in wheelchairs) some have to cath to empty there bladders while others dont, EVERY case of SB is different, and ALL the causes of SB are still unknown, there is NO family history of it in my family or my ex's family, yet I have a child with SB. My 5 year old daughter has Myelomenicile and is walking and talking and will be attending REGULAR kindergarden this fall, if you want to know more about Spina Bifida go to www.spinabifidaassociation.org that will show you lots of information, unforntaly I am not near my mother right now who is a nurse and would really be able to answer the other part of your question.  (+ info)

I lost my baby - How do I stop the hurting?

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last Tuesday at 18 wks my baby was diagnosed with semilobar holoprosencephaly. She had only half a brain, heart problems and other deformities. Chance of survival was 0%. I had to have a medical induction, as her she had water on the brain and it was causing her head to swell. Emma Catherine was born alive and we had the chance to hold her and kiss her for an hour. Then she went to God. My heart aches so badly and I want to be pregnant again so bad that I can't stand it. Has anyone had a similiar situation? I feel so alone. Is it normal to feel this way? What should I do?
Bless your heart...wish I could come thru here and give you a big hug...just mourn her and be thankful for the short time you had w/ her...evidently baby Emma accomplished her mission and God knows how it has impacted you and you family. Take time to mourn her and talk to your dr about the chance of this occurring again and see how long you need to let your body heal before you conceive again. I will keep you "mom of 3 girls" in my prayers! God Bless!!  (+ info)

If you had a baby and it had severe malformations would you have any legal right to put it to sleep or ?

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It is an odd subject but if you were the parents of a newborn with severe genetic malformations such as elephantiases or holoprosencephaly. Would you have any legal right to have the baby's life terminated just on the grounds that it will probably have a horrid life ? Like a mercy killing.

note : I am just curious if this has ever been brought up in court or anything I don't plan to have kids (much less with severe genetic defects) anytime soon)
"I don't plan to have kids (much less with severe genetic defects) anytime soon"
not planning on having kids is one thing, but you cant really plan on having a "normal" child.... just saying....

and i dont think that you are allowed to kill ur baby for being deformed.....  (+ info)

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