For patients and families, local location means specialty care close to home

Ethan Rodriguez

Two-year-old Ethan Rodriguez is familiar with hospitals and doctor’s offices.

From the time the Moline, Ill., boy was born, his local pediatrician had concerns about his low hairline, broad thumbs and big first toes, and feeding issues.

Ethan underwent a brain scan and other tests, but the results did not identify a specific problem.

When he was 1 year old, Ethan was referred to University of Iowa Stead Family Children’s Hospital for genetic testing. He was diagnosed with a rare disorder, known as chromosome 15q11.2 syndrome (also known as dup15q syndrome), which can cause decreased muscle tone and delayed motor skills, intellectual disability, autism spectrum disorder (ASD), and epilepsy (seizures).

Ethan’s diagnosis—and continued problems eating—meant frequent trips to the hospital.

“He didn't become ill overnight,” says Ethan’s father, Erik Rodriguez. “He had feeding problems since birth, causing a lot of vomiting. He was diagnosed as failure to thrive and was referred to pediatric GI [gastroenterology], who ordered a swallow study (X-Ray test) that found his malrotated intestine. That led to a consult with pediatric surgery.”

Malrotation refers to a condition in which a baby’s intestines don’t position themselves properly leaving the intestines at risk for twisting—a condition that requires surgery.

Fortunately for Ethan, UI Stead Family Children’s Hospital is home to the only pediatric surgery team in Iowa and western Illinois with specific expertise to care for children—from premature infants to young adults. The team includes pediatric surgeons, anesthesiologists, nurses, nutritionists, pharmacists, technologists, and support staff, all dedicated to the care of infants and children. They also use music therapy to help children recover from surgery and to manage pain. This was extra helpful for Ethan who loves music, especially his father’s vintage vinyl records. Ethan’s autism makes it difficult for him to deal with changes in his environment, pain, and surgery. This worried the family and they were afraid to commit to surgery.

Despite Ethan’s challenges, he did well through surgery and his post-surgical hospital stay without any complications thanks to the dedication of the staff and the most important members of his team—his family. The surgical team, child life, and music therapists worked with parents who brought their music collection to minimize Ethan’s stress, anxiety, and pain. The team learned that Ethan likes Wings, a band that was started by Paul McCartney after the Beatles disbanded. Ethan can listen to his favorite song repeatedly and gets great satisfaction and joy from music. The holistic approach to surgery and the peri-operative care helped Ethan as well as the family sail through the experience and have a very good surgical outcome.

UI Stead Family Children’s Hospital physicians and surgeons work hand-in-hand with community health care providers and offer pediatric subspecialty consultations and appointments in Cedar Falls, Cedar Rapids, and the Quad Cities, which made pre- and post-surgery appointments close and convenient for the Rodriguez family.

Providing specialized health care close to home benefits children and families—improved access to expert care leads to better outcomes and lower overall medical costs. Families save time, have less travel, miss fewer school days, have less stress, and miss fewer appointments.

Following surgery to reposition Ethan’s intestines, doctors made another discovery: The chromosome involved in Ethan’s disorder had a mutation, causing a new diagnosis of Rubenstein-Taybi syndrome—a condition that can result in short stature, serious intellectual disability, and distinctive facial features. The thumbs and first toes on people with Rubenstein-Taybi syndrome are often broader than usual as well.

Although he will continue to face health challenges, Ethan’s outlook today is positive, according to his father.

“With the 15q syndrome, it [Ethan’s outlook] was unknown. We didn’t know what we were facing because [the disorder] is so rare,” Erik says. “But now that we have a specific diagnosis, we have a blueprint as to how he will develop and what to expect. He’s dealing with some developmental delays—he’s just now starting to stand on his own without any assistance—but he’s improving and he is a very sweet boy.”

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