about

Our little Lulu Grace “graced” our family Thursday, September 23, 2010 at 8:14 pm. She weighed 4 lb 9 oz and was 17 inches long. She was taken down to Dayton Children’s that same night. It was a long weekend waiting for test results about our newest little girl and 4 days later she was diagnosed with “Trisomy 18”.
What is T18, you may ask…well, Trisomy 18, also known as Edwards Syndrome, is a chromosomal abnormality where there is an extra chromosome present in every cell of the body. Our little girl was extra special. This extra chromosome means that every cell has extra information encoded into it. The extra information causes confusion in the way that the cells are formed. Just like with Down’s Syndrome (Trisomy 21), there is a wide range of how this condition will play out. Unfortunately because there is more information encoded on the 18th chromosome, the severity of this condition is greater than that of Down’s Syndrome. Studies show that while 1 in 3000 children will be diagnosed prenatally with T18, only half that number (or 1 in 1500) will be born alive at full term. Of those who survive to birth, only half will make it to two months of age, and only 10% will survive to their first birthday. Our little Lulu beat so many odds, living 2 months and 1 day.
God blessed us with 62 days to love her, hold her, sing to her and kiss her and what an amazing 62 days they were. We continue to daily thank God for blessing us with such a perfect little gift, that we had for just a moment, but that moment has transformed our lives forever!

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