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 and Dederscheck were told that doctors noticed unexpected changes 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 close 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 puzzled 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.”

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, where he received specialized medical care.

Marfan syndrome is a rare genetic condition that affects connective tissue, the fibers that support and anchor organs, according to Mayo Clinic. It can affect the heart, eyes, blood vessels and skeleton. Neonatal Marfan syndrome is a particularly severe form that appears during early infancy and often progresses rapidly during childhood, according to the Marfan Foundation.

In Riot’s case, his heart valves didn’t close properly, affecting how oxygen-rich blood circulated through his body. Shelman said he also had an enlarged heart, which compressed his left lung and caused his right lung to overexpand, leading to significant breathing difficulties.

“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 returned to the hospital just two days later after his condition suddenly worsened.

On Monday, Dec. 8, the couple received heartbreaking news. Doctors said they had explored every available treatment option for Riot and encouraged the new parents to begin discussing comfort care and next steps.

“They have tried everything this go around,” Shelman said at the time. “When they came in to talk to me, they said that they had exhausted every option, and it was time to start thinking about comfort care. I knew it was coming, honestly, but it didn’t truly sink in until they sat me down to call his dad and have that conversation.”

Despite the emotional update, Shelman said she was grateful for every moment she had with her son. She even hoped things might improve before 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 through this, but we also need to be realistic and be prepared,” Shelman added.

However, in an update to a GoFundMe page created on behalf of the parents, Shelman’s mother shared that the couple’s baby boy had peacefully passed away. “My grandson Riot passed peacefully on Tuesday morning,” she wrote. “He was surrounded by love in my daughter’s 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 never stop fighting. In the four short months he was on this earth he shared so much love and joy with everyone he met, and that love was returned many times over.

“Riot will be forever loved and forever missed.”

Source: People