Jessica had her 18 week ultrasound today, and they found some very serious concerns with our baby (Caroline Mary). They saw that the back of the Caroline’s skull had not closed and there was a significant portion of her brain that is outside the skull – her head is abnormally shaped. They also saw that both kidneys were very swollen and have cysts, and there was extra fluid around the heart.
These conditions lead them to diagnose Caroline with Meckel-Gruber syndrome, a rare and fatal genetic disorder that was only discovered about 5 years ago. This would be officially diagnosed with an amniocentesis, which they attempted today (twice), but were unable to pierce the amniotic sack. Jessica goes back to try again on the 24th. If the disease is confirmed, the doctors expect Jessica would carry the baby to term, but Caroline would die shortly after birth – hours to days.
All we ask is for your prayers for Caroline and Jessica, and to please share this with people who know us. It’s naturally hard to broadcast this amid the normal factors of life while processing this latest news. I’m sure I’m missing people on this e-mail, but my head’s not on straight right now. That’s everyone except our children – we’re still figuring out how to tell them this news.
We trust in God’s plan, and while we don’t know how Caroline fits into the grand purpose, we’re blessed to be a part of it in the smallest way we can.
Thank you for your prayers.