Our daughter, Lily Grace, was born to heaven on June 6, 2010. She was diagnosed with alobar holoprosencephaly (HPE) and a rare arrangment of trisomy 18 (isochrome 18q). To learn more about our experience, you may want to start at the beginning. Read Lily's Story: from Beginning to End, which is one of the first blog entries on June 24, 2010.


He heals the brokenhearted and binds up their wounds. Psalm 147:3

Therefore we do not lose heart. Though outwardly we are wasting away, yet inwardly we are being renewed day by day. 2 Corinthians 4:16-18

He will cover you with his feathers, and under his wings you will find refuge; his faithfulness will be your shield and rampart. Psalm 46:1


Wednesday, June 23, 2010

What is Holoprosencephaly?

The following is information that I have gathered from numerous articles, research studies, and websites.
Definition:
Holoprosencephaly is a profound fetal brain anomaly that cannot be altered or treated. It is a disorder in which there is a failure of the front part of the brain to properly separate into what is commonly know as the right and left halves of the brain. This lack of separation is often accompanied by abnormalities of the face and skull. Holoprosencephaly may occur individually or as a component of a larger disorder.
A chromosomal abnormality is more likely to be present if extrafacial abnormalities are detected on sonography.
Types of holoprosencephaly:
Holoprosencephaly comes in three different types: alobar, semilobar, and lobar. Each of these classifications is based on the amount of separation between what is commonly known as the left and right halves of the brain.
Alobar holoprosencephaly is considered to be the most severe form of the disease, in which the separation between the two halves, or hemispheres, completely fails to develop. This was Lily's diagnosis.
Semilobar holoprosencephaly represents holoprosencephaly of the moderate type, where some separation between the hemispheres has occurred.
Lobar holoprosencephaly represents the least severe type of holoprosencephaly in which the hemispheres are almost, but not completely, divided.
Prognosis:
Most severely affected patients die at birth or in the first 6 months of life. Survival, with variable mental retardation, occurs in mild cases. Holoprosencephaly is highly lethal during fetal life. It is estimated that only 3% survive long enough to be considered a live birth.
For more information about holoprosencephaly visit www.sonoworld.com/fetus/page.aspx?id=115

3 comments:

  1. For more information about holoprosencephaly visit www.sonoworld.com/fetus/page.aspx?id=115

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  2. I am so sorry you lost your beautiful baby girl. My daughter was born with semi lobar holoprosencephaly and we have had many scares over the past two years.I have not lost my baby girl but I wanted to tell you must be a strong woman to have gone through what you have been through. I dont know if there are any words to say to you that will make you feel better but my prayers are with you and your family.

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  3. Thank you so much Ashley. I have heard from many families who have had children with alobar HPE, but do not know many with semi lobar. I would love to learn more about that. How old is your daughter now? I will definitely keep you and your daughter in my prayers as well.

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