Saturday, January 25, 2014

Rachel's Baby

When my sister, Rachel, was 20 weeks pregnant, she went in for her anatomy scan. It was the third week of December, and she was excited to learn the sex of her third baby, so she could share the fun news with family on Christmas. The ultrasound tech couldn't detect the baby's sex, though, and told my sister to come back mid-January—which was a huge bummer at the time. Unfortunately, things got dreadfully worse from there.

The next day, Rachel's OB called to tell her that her anatomy scan didn't go well. I was in an important work meeting, and I'll never forget my sister's text:  "It looks like baby has defects all through its body..." Nobody was sure what to think at that point, so we all tried to stay optimistic, and hoped that whatever was wrong with her baby could be fixed.

But it can't be. Before that anatomy scan, there was no reason to suspect that anything could be wrong with this active, kicking-up-a-storm baby, but two days later, Rachel's amniocentesis results revealed that her baby has an extra chromosome 18 on all of its cells. All of his cells—the test also revealed that her baby is a boy.

So, at 20 weeks pregnant—five months!—my sister and her husband, Greg, learned that their baby boy has trisomy 18, a rare and fatal chromosomal disorder. His defects are numerous and severe, and he has a 10% chance of being born alive—and if he's born alive, he'll only be here for a few moments before passing away.
Despite knowing these grim statistics, Rachel and Greg chose to continue the pregnancy. They're sharing their story, and they're celebrating their baby boy—his kicks, his ultrasound pictures, his presence—as long as they can. How amazing are they? They pray they're able to hold him and bond with him—even if just for a little while, and I'm hoping with everything I have that they're granted this opportunity. Lord knows they deserve it.
My heart hurts in a way I don't have words for, and it destroys me to think that the pain I'm feeling is a million times worse for Rachel and Greg. They are so, so strong—and Ryan Jedediah (his name means "strong willed, friends with God") couldn't have picked two better parents to love him.

Blowing bubbles at his last ultrasound.

His auntie loves him, too. Tremendously.


Katy G. said...

Oh my goodness. I'm in tears for your sister. ((((Huge Hugs)))) to all of you.

Nicole said...

My heart breaks for you all as it smiles at the love and courage I feel from your words. Prays for everything .

Nate & Stacey Freitag said...

Prayers for your sister and family! Sounds like baby Ryan has a wonderful set of parents and family that love him! What a beautiful baby boy.

I lost a brother who had similar diagnosis. He wasn't expected to breathe or cry but we had 41 precious minutes with him to hold and hear his strong cry. He was truly a miracle. Prayers that your sister can make the most of every moment they have with him.

I recently just finished reading the book, "I will carry you" by Angie Smith who also lost a child in a similar manner and she shares her journey and how they celebrated her daughter's short life. A touching and honest but encouraging read...

Amanda said...

Thanks for the kind words, friends.

Stacey, I'm so sorry you had to lose your brother like that, but I'm so glad you got to hear his cry. I can only imagine how dear those 41 minutes were--and are--to you, and I hope like crazy my sister gets time with Ryan. I'll let her know about "I Will Carry You." Thank you.