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Mom shares story of loss, hopes to help others learn after baby born with rare condition

“When a mom brings her newborn from the hospital, you get to show everybody this beautiful human you’ve brought into the world. With Melody gone, we don’t get to do that.”

TROY, Mo. - After a difficult pregnancy and a painful loss, a Lincoln County woman says it's important she share her story: not just with others in her life, but with doctors and families she may never meet.

“When a mom brings her newborn from the hospital, you get to show everybody this beautiful human you’ve brought into the world,” said Kayla Leibner. “With Melody gone, we don’t get to do that.”

Kayla and her husband Ben have three kids: Jace, who just turned 11, and 2-year-old Kylie. Melody died the day she was born on August 21, 2017.

“You know, parents shouldn’t bury their children,” Kayla said.

An already difficult pregnancy took a turn for the worse at Kayla’s 30-week ultrasound. Doctors determined Melody’s heart was too big - her lungs, too small.

“He said sometimes the heart can become enlarged due to an infection and with that it’s easy fix, so in my head I was like, ‘oh that’s what’s wrong,’ you know, because that’s what I wanted.”

But they soon learned it was due to an extremely rare condition called Ebstein’s Anomaly - which could get better while she grew in Kayla’s womb. But fluid was also gathering in Melody’s abdomen due to hydrops fetalis, a sign she needed to come out. Kayla was admitted to the hospital on a Friday.

“I just completely lost it,” she said. “They told me that I will be there until she was born.”

Kayla didn’t know that would be the following Monday.

“They did their scans and everything, and the doctors came in and they told us that she was in severe heart failure. They gave us our options but what we needed was to deliver her immediately.”

Melody was born in an emergency C-section.

“They did bring her into my head while I was being closed up. She was beautiful perfect but then her stats dropped and so they had to rush her out. So I got a few seconds,” said Kayla. “In that moment like there was nothing, it was just me and her. There was a part of me kind of knew how things were going to end. I was just trying to be with yourself and take the time that I needed to look at her.”

Ben went to the NICU with Melody; doctors brought Kayla to meet her husband there.

“He told me, ‘she’s trying so hard and it’s not working,’” she said. “She lived an hour and 27 minutes. And she tried really, really hard; they told me that they had seen a baby fight so little to live in a really long time.”

“I’m proud but it makes it so much harder because it didn’t work out the way that we wanted.”

The family spent several hours with the baby they’d never get to bring home.

“When Kylie got there, she ran over and her face was just lit up: ‘daddy, is that my sister?’” remembers Kayla. “And she kept saying how pretty she is and, you know, “I need her to wake up I want to tell her.’ It was just completely heartbreaking.”

Nurses snapped photos Kayla now treasures: proof of her family of 5 - images of the heartbreak.

“I have my other two beautiful wonderful children. And, today, are the reason that I get up in the mornings,” she said. “But some days I really just don’t want to.”

But doctors first brought out cameras to record the entire procedure: from the moment Kayla’s C-section began to the sound of Melody’s last heartbeat. Kayla and Ben opted to share it with other doctors.

“They can use those videos now, what could we have done differently is there anything we could have done better, did we miss anything,” said Kayla.

While she believes her doctors did everything they could for Melody, she also signed off on an autopsy as another opportunity for them to learn.

“For a split second the thought of somebody, you know, doing that, was kind of bothersome I guess,” she admits. “But there’s too many babies that lose their lives to things like this already and if we can help somebody else you know, I have to do that.”

Kayla life has a different rhythm now, but she knows her little girl will live on by helping others.

“Melody’s life was small and short--but if I can help another baby like her, or if we are able to use her life to help another family to not have to experience what we experienced and what we are going through, then it’s all worth it.”

Kayla says the strong community of support for those who’ve lost a baby help her through it. If you or someone you know has lost a child, resources are available in the St. Louis area.

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