Davenport, Iowa

Elisha and Steven Arguello and their three children are a close-knit family. Smiles are shared, and happy moments cherished, for they know what it means to consider each day a gift.

When Isaac was born in February 2001 at Genesis Medical Center in Davenport, doctors saw immediately that the newborn was struggling. Isaac was a small baby; he was pale; and he was having extreme difficulty breathing.

“They took him to intensive care right away. It was so unexpected,” Elisha says. “His lungs kept collapsing, and they didn’t know what was wrong.”

Recognizing that he needed specialized pediatric care, Genesis physicians transferred Isaac to University of Iowa Stead Family Children’s Hospital to find the cause and extent of his condition.

After a series of tests, plus extensive consultations among the health care team, UI doctors determined that Isaac had Jeune syndrome, a rare genetic disorder that affects the way bones develop. Signs include shortened bones in the arms and legs and–as in Isaac’s case–a smaller, narrower rib cage that restricts the growth and expansion of the lungs. This causes severe breathing problems and potentially life-threatening complications. In fact, many patients die from respiratory failure when they are babies or young children.

UI Stead Family Children’s Hospital specialists had seen only a handful of Jeune syndrome cases over the past two decades, but they quickly developed a treatment plan. Isaac’s condition was stabilized, and he remained hospitalized until he was 1 month old. Elisha and Steven were able to spend several nights with Isaac in a “step-down” neonatal intensive care unit and received training to give him oxygen and other therapies at home.

At 2 months old, Isaac returned to UI Stead Family Children’s Hospital for neurosurgery at the base of his skull to relieve pressure on the spinal cord that, in turn, affected his breathing. The procedure was a success, and soon Isaac could go without supplemental oxygen.

Isaac has faced medical challenges as he’s grown older–other lung problems, respiratory infections, mobility issues, and cognitive and developmental deficiencies, for example. He has had numerous procedures, therapy sessions, and follow-up visits at UI Stead Family Children’s Hospital, but Isaac continues to make great progress.

“They took this little baby who could hardly breathe, who wasn’t supposed to make it through his first year, and they gave him a chance to live,” Steven says. “So if you ask me how Isaac’s doing now? He’s Superman.”
Indeed, Isaac is an outgoing boy who loves swimming, video games, and “family movie nights” at home. He’s a protective big brother to sister Serenaand a role model to younger brother Lucaswho also was born with Jeune syndrome.

“UI Stead Family Children’s Hospital has been the difference–for both of our sons,” Elisha says. “The level of care is the best anywhere. And as parents, we’re always treated with dignity and respect. They trust us, and we trust them.”

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