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 Trisomy 18?

Trisomy 18, also known as Edwards syndrome, is a condition which is caused by a chromosomal defect. It is considered lethal or has a very poor prognosis in all cases. 50% of affected infants born alive (most result in miscarriage in the early stages of pregnancy) will die in the first 2 months of life and 90% will die in the first year. All survivors with full trisomy 18 have profound mental retardation.
A great website to get more information about this condition is www.trisomy18.org
Also, www.trisomy.org is a support organization for parents who have had or are expecting a child with a chromosome disorder (especially trisomy 18 or trisomy 13).

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