FORSYTH, Ill (WAND) May is Anencephaly Awareness Month. Anencephaly is a rare disease in which a baby does not fully develop their skull before birth. Virtually all babies die before birth or within hours after birth. The fatal diagnosis rocked the lives of a Central Illinois family this past month.
"We know that every day is a gift," said Rachel Morrow, the mother who found out about the diagnosis last month.
"Suddenly, we went in for a routine routine ultrasound, kind of a dating ultrasound for our baby. We were around 11 weeks. And they kind of looked at us and said, there's something that's just not right with the baby's head," Rachel said.
They soon found out their baby would have virtually no chance of living, but they are still thankful for him regardless.
"There are days that I wish that we could just wipe the slate clean and start again, hope for another baby that doesn't have this problem. But at the same time i'm really hoping to get a hold of my baby get to see this little baby feel the life in this baby," Rachel said. That's why they have chosen to keep the baby as long as they can, in hopes of making him feel loved in the womb and hold him briefly when he's born.
"Taking maternity photos and going on vacation with this baby and taking the kids to the park, the baby gets to go with us, we get to kind of enjoy that. But at the same time, it kind of carries this sadness, because I know that once the baby's here, they won't get to be a part of this anymore," Rachel said. She has a lot of understanding and support from her 5 other kids, she says.
"They are so connected with this baby already. They they sing to the baby..." Rachel says. In addition to siblings and the community, they say their faith has been their rock through it all.
"If it wasn't for the hope that we have in being able to see this baby again, I don't know that i'd be able to get up every day," Rachel said. Rachel's husband Joey says he has been as involved as he can be as an outside supporter.
"It's been part of my thinking to just prioritize time to just put my hand on the her womb and feel the baby kick, and sing to the baby. And just just spend that quality time while we have it," Joey said.
If you would like to follow their journey, you can join the Facebook group by clicking HERE.
