They also found out that he has a rare condition called Edwards Syndrome, or Trisomy 18. Trisomy 18 is a chromosomal disorder where the baby has a third 18th chromosome instead of the usual pair of chromosomes. (Down Syndrome, or Trisomy 21, is the most common trisomy.) Unfortunately, unlike Down Syndrome babies, babies with Edwards Syndrome tend to have very short lifespans: 90 percent of babies born with trisomy 18 or 13 die by age 1.
It has been a difficult journey for Surf and Cali the last few months, and there is a lot of uncertainty ahead for our little nephew. They don't know if he will make it to term, how long he will live once born, or what kind of issues he will have once he arrives.
We are looking forward to welcoming Alexander Francis to our family, and I am making plans to fly out to California for his birth over Labor Day weekend--I can't wait to meet him.
I've spent a bit of time reading about Trisomy 18 as well as other stories of babies with fatal prenatal diagnoses since finding out this news. What follows are a number of links that I've found helpful in processing all of this:
Sites about babies with Trisomy 18:
- Prenatal Partners for Life: Trisomy 18 Stories
- Trisomy 18 Foundation (click on "Get Support" and choose "Legacy Pages" from the drop-down menu. Within this page, click on "View Pages" and then "View All Pages"--this will bring up a list of Legacy Pages created by parents of Trisomy 18 babies)
- 99 Balloons: Eliot Hartman Mooney (this link takes you to an amazingly touching YouTube video)
- Reagan-Hope and Love (Reagan died shortly after she was born on May 4 and her parents are still chronicling their experience)
- Nolan's Miracle of Life (Nolan celebrated his first birthday on June 25!)
- Bring the Rain: Audrey Caroline (they also have a book, called I Will Carry You, about their experience. I haven't read it, but Cali has).
- Finding My Feet: Evie Grace (scroll all the way to the bottom to read the posts in order, backwards)
- Embracing Elijah
- You may also find it helpful to read this link (I know I did) written by a father who lost his baby son at birth.
Thanks for the websites. Cali and Alex look radiant!! Gr&GrK.
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ReplyDeleteI agree with Mr. and Mrs. K -- Cali is postively glowing. It's a beautiful picture of Cali and Baby Alex. We think of Cali and family often and send lots of hugs and warm wishes! Thank you for sharing the websites.
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