Nacarey

Nacarey’s condition was so perplexing, it took several inpatient stays and many months for medical specialists at N.C. Children’s Hospital to determine a diagnosis.

Mystery Solved: Physicians persevere to find diagnosis for Eagle Springs boy

When Nacarey was 11 days old, he became so sick that he had to be airlifted from Pinehurst's Moore Regional Hospital to North Carolina Children's Hospital in Chapel Hill, more than 75 miles away from his hometown of Eagle Springs, North Carolina.

Doctors began working on newborn Nacarey as soon as he arrived. They were able to stabilize him, yet they could not determine what was wrong. All his diagnostic tests came back negative.

Nacarey spent several months in the Children's Hospital's Newborn Critical Care Center when finally his mother, Julie, was able to take him home. But after being home for a couple weeks, Nacarey became so sick he had to return to the Children's Hospital. Once again, all tests came back negative.

And the cycle repeated itself again. Nacarey spent time at the Children's Hospital getting well, went home and then became sick enough to return.

"Every time he would go home, he would get sick again and had to go back," recalls Julie. "The doctor finally told me that 'after all the tests came back negative, we don't know what is wrong with him.' He told me the truth. That just impressed me so much that he said that."

Nacarey's doctors did not give up.

He was finally diagnosed with protein-losing enteropathy, a condition of the gastrointestinal tract resulting in the loss of protein from the body. This condition usually affects adults. It is so rarely seen in children, says Julie, Nacarey was the first child seen with it at N.C. Children's Hospital.

Once his care team had a diagnosis, they were able to treat him for it, and Nacarey became much better. Today, Nacarey is a busy 4-year-old who will start kindergarten in the fall. He still needs ongoing treatment, both routine outpatient care and inpatient stays on 6 Children's as needed, but he is getting better. When he gets older, he may need an intestinal transplant. But Julie knows her little boy is in good hands.

"It's really the people that make all the difference," says Julie. "Everyone at UNC has shown us so much love. The doctors and nurses were so careful with him from day one—and they never gave up on him, not once. They've given us the best care, and he’s doing great now because of them."

More about Nacarey

Hometown: Eagle Springs, NC; Moore County — about 150 miles roundtrip
Diagnosis: Protein-losing enteropathy (PLE)
Primary pediatric specialty: Gastroenterology
Other pediatric specialties seen: Endocrinology; recreational therapy
Favorite caregivers: Everyone on 6 Children's
Favorite thing about N.C. Children's Hospital: Mom, Julie, says, "Everyone at the Children’s Hospital, they’re just sweet people. They go all out. We always feel special and very loved.".

 

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