When Olivia was a few weeks old, I was researching online to try and find information about her folded, overlapping fingers. I came across a website that described her fingers exactly, and then kept reading to find out that it was related to a chromosonal disorder, Trisomy 18, Edward's Syndrome.
I kept reading.
90% of all babies born with Trisomy 18 die by their first birthday.
I lost it. It was midnight and Brian was at work. I called him sobbing.
The next morning, he called the geneticist we had seen the week before and she said that the testing done when Olivia was just a day old was to determine if she had Trisomy 18. She didn't. Thank God Dr. Duralia didn't tell us the details when he ordered the test.
I've searched for Trisomy 18 online since then, and one day I came across a blog of a father whose son was diagnosed with Edward's Syndrome. Eliot lived 99 days. Today, I found this video on Lindsey's blog. It was created by Eliot's father. I am so touched by these parents, their faith, and by baby Eliot.
1 comment:
That story was amazing! We were actually given the diagnoses of Trisomy 18, 2 hours after Haley's birth & again the next morning. I tried to hold back researching it on the internet and just see what happened, but I couldn't. It was a long 2 months waiting on full genetic test results to come back negative. I went to bed many nights crying, wandering if I would see her in the morning. What a humbling story of baby Eliot, an such amazing parents he has.
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