"Miracle" Baby With Rare Medical Condition to Celebrate 1st Birthday - NBC Southern California

"Miracle" Baby With Rare Medical Condition to Celebrate 1st Birthday

Jonah celebrates his first birthday May 7 despite congenital birth defect



    "Miracle" Baby With Rare Medical Condition to Celebrate 1st Birthday
    Kelly Kilimnik
    Jonah Kilimnik, pictured here Tuesday, April 23, 2013, was born with a rare condition that caused his intestines and other organs to grow on the outside of his body, but he's about to celebrate his first birthday May 7. His parents call him a "miracle."

    A baby’s first birthday is a childhood rite of passage, like getting that first tooth or learning to ride a bike.

    There was a time when a family in Hesperia thought Jonah Kilimnik, the family’s newest addition, would miss out on all of that, including getting his birthday cake on May 7.

    "It just makes you realize that life is a miracle, and life is precious and beautiful,” said Jonah’s mother, Kelly Kilimnik.

    Jonah was born with a rare condition called a giant omphalocele that affects one in 10,000 babies.

    An omphalocele is a condition usually detected before birth where the baby’s intestines, liver and other organs grow outside of the body in a membrane, or sac.

    But Jonah’s condition was even more rare -- the sac wasn’t there. Jonah was born with a ruptured giant omphalocele -- a condition so rare, no data has been published on the form of this condition.

    Jonah’s pediatrician, Dr. Akhil Sharma, said he hadn’t seen a giant omphalocele like Jonah’s in 22 years as a doctor.

    The condition is a congenital birth defect that occurs when the intestinal wall is too weak, and causes the intestines and organs to push into the umbilical cord, according to Minnesota Neonatal Physicians.

    Jonah was born prematurely at 35 weeks via cesarean section. Doctors fashioned a sac and sewed it to Jonah’s body to hold in his organs. Despite the likelihood of infection, Jonah survived.

    Kelly and Matthew, Jonah's parents, sang and strummed songs on a guitar to Jonah in the hospital to aid in his recovery.

    "It's just what we do,” Matthew said. “You just adapt and overcome."

    After nearly a year, Jonah’s parents said they are happy to report that he is doing well.

    Jonah's parents said they have big plans for him when he gets older, opting for a reconstructive surgery.

    Jonah’s big brother, Parker, also said he had ambitions for Jonah.

    "I'm going to teach him to ride his bike with no training wheels, because I ride with no training wheels,” Parker said.

    NBC4’s Jacob Rascon contributed to this report.  

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