Rare disorder takes the life of couple’s first child

The couple wanted their son’s short life to make a difference for others.

​​Eric and Bethany Conkel of Dayton were naturally excited when they found out they were expecting their first child. In early 2012, when Bethany was just 11 weeks pregnant, she and Eric found, after a routine ultrasound, that their son had a rare disorder called Anencephaly, which is characterized by malformed brain tissue and lack of a fully developed skull.

“It was a total surprise,” Bethany said. “They told us he had this condition and it was 100 percent fatal.” And though doctors encouraged the couple to terminate the pregnancy, they decided instead, to carry him to term and do what they could to help him leave a legacy after his brief life.

“We approached this pregnancy with a bucket list of things we had always hoped to do with our child,” Bethany said. “We wanted to spend as much time with him as possible.”

This meant doing all the things on the list before their child was born, like going to the zoo, a monster truck show, going to his father’s favorite park and planting a tree together as a family.

“We wanted to give our son the best life possible while he was with us,” Bethany said.

As they anticipated the birth of their son, whom they would name Amalya Nathaniel (his first name is a Hebrew word meaning “work of the Lord,”) the couple also knew they wanted to help other children by donating his organs upon his death. “Two weeks after we received our diagnosis, we decided we wanted to pursue organ and whole body donation,” Bethany said.

But they ran into roadblocks every step of the way, hearing from nearly every organ donation organization they contacted that Amalya’s condition would prevent donation.

But as Bethany’s due date approached as well as her scheduled C-section on Sept. 17, 2012, they decided to make one “last ditch effort,” to find a way to donate Amalya’s organs and body. “We were excited when everything fell into place a few days before he was born,” Bethany said. “We found out we could donate his liver, pancreas and body for scientific research.”

Life Connections of Ohio, a local organ donation organization, helped set up the surgery for Amalya and worked to place the organs. “Our baby lived for one hour and 20 minutes,” Bethany said. “We were grateful that we had that time with him and were able to hold him.

After Amalya’s death, his organs were recovered and he was returned to his parents so they could spend one entire day with him before his body was taken to researchers from across the country.

“We had 11 hours with him,” Bethany said. “We took a lot of pictures and we even had a birthday party for him with our families and friends.”

Prior to saying good-bye to their son for the last time, Bethany said she dressed him in a white outfit and wrote a note on his clothing to researchers studying his body. “I wrote that we hoped he could help someone get well,” Bethany said.

And though this story is certainly tragic, the sadness the young parents felt at losing their son was lessened because they knew they were giving a tremendous gift to medical professionals across the nation.

“We were interested right away to know where his organs and body went,” Bethany said. “We found out his liver and pancreas were helping researchers learn more about pediatric illnesses, like type 1 diabetes and also about cirrhosis.”

Two years later, the Conkels have turned their tragedy into a purpose to help other families who receive the same horrible news they did – that their child will have an extremely shortened life. The couple started a website called Purposeful Gift, which promotes organ, tissue and full body donation from families who receive a terminal diagnosis for their child.

“Families have many decisions to make when they receive this kind of news,” Bethany said. “We would like to encourage everyone to consider carrying their babies to term to help create a lasting legacy for their child.”

The Conkels now help with all aspects of the process, including bereavement, helping to set up donations, and encouraging other families to put together a “bucket list,” as they did and to celebrate their child’s shortened life.

Today the couple has a three month old daughter, Hazel Rinoa, who was born 100 percent healthy. And they say their support system, along with their strong faith, helped them survive the tragedy of losing Amalya. “We knew the Lord had a purpose for Amalya, and I think that’s what helped us get through emotionally,” Bethany said.

Bethany and Eric have traveled all over the country and have shared their emotional story nine times, helping to support grieving parents and encourage donation.

“We want people to know that we are focusing on the positives of our son’s life,” Bethany said. “Sure I’d much rather have a 2 year old running around, but in his short life and afterwards, he was able to touch other people and lives are being saved because of him. Most babies like this are aborted or induced early but we are so happy that we carried to term. It was worth it in every way.”

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