Parents donate baby’s organs after she dies from rare condition

CHATTANOOGA, Tenn. (WDEF) — A baby born in Chattanooga with an underdeveloped brain died after beating the odds for one week. Baby Rylei’s parents are sharing her story to raise awareness about this rare condition and the importance of organ donation.

At an Erlanger hospital room, there are reminders of baby Rylei. Mother Krysta Davis and father Derek Lovett say the pregnancy started out normal.

“It was incredible. We actually found out her gender at like sixteen weeks. The poor lady had to fight with her to even figure it out. Every time she had the perfect shot, she would cross her legs,” Davis said.

They went for a screening to test for down syndrome and spina bifida. The results came back abnormal. They then went to see another specialist.

“So when he came back in, I noticed he spent a lot of time in her head and he was seeing something that I just didn’t notice in there. And that is when he broke the news to us that it wasn’t spina bifida that they suspected. It was actually anencephaly.”

Anencephaly is a fatal condition where the baby has an underdeveloped brain and an incomplete skull.

“Unfortunately a number of those babies will die during the child birth process and so it is rare for us to have a baby that survives to be able to be held by mom and dad,” said Dr. Kyle Gonzales, with Erlanger Hospital.

Doctors told the couple they could decide whether or not to carry the baby to term.

“He was like just know if you do carry her to term that you will be able to donate her organs if that is something you guys are interested in,” Davis said.

That is what they wanted to do.

“Well, the way I looked at it too, was if I couldn’t bring my baby home at least other mothers could bring theirs home,” Davis said.

Rylei was able to donate two heart valves and then lungs for research.

“The parents are just stronger than I can ever imagine in making this decision and Rylei has now left a legacy and is a hero because of it,” said Dawn Mazurek, the hospital development coordinator.

Rylei’s parents are thankful she beat the odds and they were able to spend some time with her.

“There is no way to describe how amazing it felt. When you go from thinking maybe you are going to have twenty minute’s to an hour with your child and you get an entire week,” Davis said.

Erlanger doctors say the condition is very rare. They say roughly one in 10,000 babies get it.

If you are interested in learning more about organ donation, click here.