2S. Parents Welcome ‘Miracle’ Baby After 3 Years of Infertility. 4 Months Later, He Dies from Rare Disorder

NEED TO KNOW

• Marci Shelman and Tristan Dederscheck’s “miracle” baby boy, Riot, was diagnosed with a rare and life-threatening genetic disorder called neonatal Marfan syndrome
• After more than 90 days in the NICU, doctors told the family that they had exhausted all treatment options
• On Dec. 11, the family announced that baby Riot had died in his mother’s arms

An Idaho couple is saying goodbye to their miracle baby just four months after he was born.

Marci Shelman and Tristan Dederscheck, from Blackfoot, Idaho, tried to have a baby for three years but struggled to conceive naturally. In January, just as they started to consider IVF, the couple learned that Shelman was pregnant.

“He was our miracle because we didn’t do any treatments to get him,” she told the Idaho State Journal. 

However, at her 20-week checkup, Shelman, 35, and Dederscheck, 38, were told that doctors noticed abnormalities in their baby’s development. They were referred to specialists from the fetal center at Primary Children’s Hospital in Salt Lake City, Utah, for monitoring.

“The one thing that was always the same was his heart and his valves not functioning properly,” Shelman told the outlet.

Shelman said that doctors were confused by the baby’s changing condition throughout her pregnancy. It inspired them to name him Riot.

“Every time we had a new scan, it was changing, and he was just puzzling the doctors,” she explained. “Every scan, something different appeared, something different went away. So I’m like, this kid is going to cause chaos, and that’s how we knew he was going to cause a riot. He has done so since the day he was born.”Riot James Ayden.

On Aug. 6, Shelman and Dederscheck welcomed Riot, nearly seven weeks premature. Shortly after, he was diagnosed with neonatal Marfan syndrome and admitted to the NICU with serious health challenges.

Marfan syndrome is a rare and life-threatening genetic disorder that affects connective tissue, the fibers that support and anchor organs, according to Mayo Clinic. It impacts the heart, eyes, blood vessels and skeleton. Neonatal Marfan’s is characterized by a severe presentation of Marfan syndrome in early infancy and rapid progression during childhood, according to the Marfan Foundation.

In Riot’s case, his heart valves didn’t close properly, causing blood flow without proper oxygenation. Shelman said he also had an enlarged heart, which compressed his left lung and caused his right lung to overextend, resulting in severe respiratory distress.

“He can’t get the proper oxygen to his body,” she shared at the time.

Riot spent 91 days in the NICU and was finally able to go home on Nov. 6. However, he was back in the hospital in critical condition just two days later.

On Monday, Dec. 8, the couple was given a devastating update. Doctors said there was nothing else they could do for Riot’s health and encouraged the new parents to discuss end-of-life arrangements.

“They have tried everything this go around,” Shelman said at the time. “When they came in to talk to me, they said that they have exhausted everything, and it is now time to start thinking about end of life. I knew it was coming, honestly, but it wasn’t real until they just sat me down to call his dad and have that conversation.”

Never miss a story — sign up for PEOPLE’s free daily newsletter to stay up-to-date on the best of what PEOPLE has to offer​​, from celebrity news to compelling human interest stories. Riot James Ayden.

GoFundMe

Despite the heartbreaking prognosis, Shelman said she was grateful for the time they’d had with their son. She even felt optimistic that things would turn around for the holidays.

“I’m lucky because I’ve gotten to be here with him every day,” she said. “We’re hoping and praying he somehow makes it out of this, but we also need to be realistic and be prepared,” Shelman added.

However, in a Dec. 11 update to a GoFundMe page created on behalf of the parents, Shelman’s mother announced that the couple’s baby boy had died. “My grandson Riot lost his fight on Tuesday morning,” she wrote. “He passed peacefully in my daughters arms.” 

“Though he spent only a brief time with us, his life was deeply meaningful and forever cherished,” an obituary for Riot read. “He was a resilient, fearless and brave young gentleman who had a good attitude no matter what he was facing and who taught his parents how to love and fight endlessly. In the four short months he was on this earth he spread so much love and joy to everyone he came into contact with, and it was given back to him in spades. 

“Riot will be forever loved and forever missed.”