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

An Idaho couple is grieving the loss of their “miracle baby,” who died just four months after his birth.

Marci Shelman and Tristan Dederscheck of Blackfoot, Idaho, spent three years trying to conceive without success. In January—just as they began thinking about IVF—they learned Shelman was pregnant.

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

But at Shelman’s 20-week appointment, the couple was told doctors had spotted developmental abnormalities. They were referred to specialists at the fetal center at Primary Children’s Hospital in Salt Lake City, Utah, where the pregnancy was closely monitored.

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

As the weeks went on, Shelman said the baby’s condition seemed to shift from scan to scan, leaving doctors searching for answers. The unpredictability inspired the name they chose for 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.”

On Aug. 6, Shelman and Dederscheck welcomed Riot nearly seven weeks early. Soon after, he was diagnosed with neonatal Marfan syndrome and admitted to the NICU with severe complications.

Marfan syndrome is a rare, potentially life-threatening genetic disorder that affects connective tissue—structures that support and anchor organs—according to Mayo Clinic. It can impact the heart, eyes, blood vessels, and skeleton. Neonatal Marfan syndrome is an especially severe form that appears in early infancy and can progress rapidly during childhood, according to the Marfan Foundation.

In Riot’s case, Shelman said his heart valves didn’t close properly, which interfered with oxygenated blood flow. She also said he had an enlarged heart that pressed against his left lung while causing his right lung to overextend—leading to serious breathing distress.

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

Riot spent 91 days in the NICU and was able to go home on Nov. 6. Two days later, however, he returned to the hospital in critical condition.

On Monday, Dec. 8, the couple received news they had feared: doctors told them there was nothing more they could do to improve Riot’s health and urged them to begin discussing end-of-life plans.

“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.”

Even in the midst of heartbreak, Shelman said she was thankful for the time she had been able to spend with her son and was holding on to hope that he might pull through.

“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,” she added.

In a Dec. 11 update posted to a GoFundMe created for the family, Shelman’s mother shared that Riot had died. “My grandson Riot lost his fight on Tuesday morning,” she wrote. “He passed peacefully in my daughters arms.”

An obituary remembered Riot as a baby whose short life left a lasting mark.

“Though he spent only a brief time with us, his life was deeply meaningful and forever cherished,” it 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.”