Surrey couple using their unborn son’s anencephaly diagnosis to raise awareness

Local News

October is Pregnancy and Infant Loss Awareness Month. To raise awareness, a local couple is sharing their story with us about a diagnosis that has forever changed their lives.

“We were 16 weeks along so you think you’re in the clear and you’re going to have this healthy baby, and then you hear the news and you have to just face the facts,” said Amy Lee.

Amy and Chase Lee found out that Amy was pregnant with their fourth child in February. After having some complications, she went to the doctor in May.

Their unborn son, Gabriel, was diagnosed with anencephaly.

“Anencephaly is a neuro tube defect. It happens during the first month of pregnancy. It’s supposed to close and if it doesn’t close, then the skull and the brain does not develop. So, he’s missing a large part of his head and brain,” Amy said.

It affects 1 out of every 1,000 pregnancies, and 1 in 10,000 newborns.

After the diagnosis, they started researching the disease and were able to find other families going through the same thing.

“When you, you know, reach out for different resources, you just, you find more people than you think you would with it being considered an uncommon diagnosis for a child,” said Chase.

To remain positive, Amy created a Facebook page called, “Gabriel’s Journey”.

“Sharing our story and sharing his life, I just want to make his life meaningful. No parent wants their child to go unnoticed or not be remembered and by doing this I feel like he’s making an impact,” Amy said.

Gabriel has been to his brother and sister’s tee-ball games, Montana and even Canada.

“Just anything that kind of comes to mind, we’re like, ‘We can do it. Take a picture and we want to share his life’s journey,'” Amy said.

She’ll be induced on Oct. 12.

“There’s so different things that could take place even from the time we going to the delivery room to the time he’s born, we just don’t know. There’s so many unknowns to this whole situation that he could be born alive, he could pass during delivery, he could live for a few days — we just don’t know at this point,” Chase said.

“We’re hoping to get some time with him, that he is born alive and whether it’s a few minutes or hours or we get to take him home for a couple days, that’s what we pray for,” Amy said.

Amy says she’s reached out to a support group for advice to prepare for the birth of Gabriel and she’s thankful to have their support.

To follow along on Gabriel’s Journey, click here.

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