Rachel's Baby: Goodbye, Baby Ryan

I don't want to include too much detail in this post, because my sister hasn't even had a chance to put her story into words yet—so I suppose the title says it all.

Last Sunday (has it really been over a week already??), at 30 weeks and 1 day gestation—the day after Rachel's maternity photos!—Ryan made his journey into the outside world. Doctors had told Rachel and Greg that Ryan wouldn't make it to 30 weeks, and I like to think he spent his last two days in my sister's belly just cracking up. He proved them all wrong.

Rachel and Greg were able to hear Ryan's little heartbeat on the monitor right up until the very end, when he just couldn't fight any longer. He was born at 11:15 Sunday night, and I traveled to the hospital the next day. Let me tell you—that baby boy was beautiful, and holding him was one of the greatest gifts I've ever received.

Ryan isn't physically with us anymore, but his story isn't over. Please feel free to visit his FB page, Ryan's Journey - Trisomy 18.

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.