While neonatal diabetes can have no symptoms, if it’s left untreated, it can cause very serious health issues and even death.

Story by: Shahrazad Encinias Reviewed by Catalina Cabrera Salcedo, M.D. on April 20, 2023

Dulce Alvarez Batres of Louisville, Kentucky, was diagnosed with neonatal diabetes when she was just 1 week old. Dulce’s mom, Wendy Batres, was not prepared at all.

“She is a girl that is teaching us a lot,” Wendy said. “From the get-go we have been learning with her.”

Although Dulce was born full term at UofL Hospital, she had a low birth weight of just 5 pounds, 3 ounces. Doctors discovered she had hyperglycemia (high blood sugar), and Dulce spent three days in the hospital’s neonatal intensive care unit (NICU) before she could go home.

“Hyperglycemia is not very common in newborns. However, some can have hyperglycemia due to stress from prematurity, infections or medications,” said Catalina Cabrera Salcedo, M.D., pediatric endocrinologist with Wendy Novak Diabetes Institute, a part of Norton Children’s Endocrinology, affiliated with the UofL School of Medicine.

When Dulce went home, she slept and ate like a healthy newborn, according to Wendy. But three days later at her checkup appointment, everything changed. Dulce’s blood sugar was so dangerously high that she was immediately sent by ambulance to Norton Children’s Hospital.

Dulce went straight to the pediatric intensive care unit (PICU). This time she stayed for 22 days. While neonatal diabetes can have no symptoms, if it’s left untreated, it can cause very serious health issues and even death.

“It was a painful experience for us as parents,” Wendy said.

Because of her high blood sugar, Dulce couldn’t be fed for a day and a half. The baby cried a “sea of tears,” according to Wendy, and there was nothing her parents could do to soothe her.

“When Dulce was admitted to the PICU, she required an IV insulin drip to treat her severe hyperglycemia. For that reason, she was not allowed to eat until her blood glucose stabilized,” Dr. Cabrera Salcedo said.

“Everything was out of our control,” Wendy said.

That’s when the diagnosis came. Dulce’s neonatal diabetes was caused by a mutation in the insulin gene, meaning she doesn’t produce enough insulin.

“Our case is quite unique because Dulce doesn’t have [the more common] Type 1 or Type 2 diabetes,” Wendy said. “It’s a gene that is mutated in her. That’s it.”

As simple as it sounds, it isn’t. It took a team of doctors to diagnose Dulce. That’s because the rare condition affects just 1 in 90,000 babies.

Dulce was treated with the IV insulin drip for five days. Then she was started on diluted insulin, which the pharmacy had to compound especially for Dulce.

“Since Dulce was so small, she required minimal amounts of insulin that we could not administer in the traditional way. The smallest dose that can be given with an insulin pen or syringe is 0.5 units and she needed as little as 0.05 units at a time,” Dr. Cabrera Salcedo said.

Wendy never left her daughter’s side. While the rest of her family stayed at home to attend school and work, Wendy never felt alone in the three weeks she spent at the hospital.

“I had to learn so much, but the doctors showed me,” she said. “All the doctors were really special to us.”

They were with her every step of the way. Because the Alvarez Batres family speaks Spanish, their bilingual doctor was extra special to them and could ensure there was no gap in learning due to a language barrier.

Wendy learned how to check Dulce’s blood sugar every few hours and give the diluted insulin.

A few weeks after returning home, Dulce got a continuous glucose monitor, a device inserted under the skin that checks blood sugar without the need for finger pricks. Dulce then received an insulin pump when she turned 3 months. The pump delivers a steady stream of the correct amount of insulin instead of getting multiple injections.

“Dulce’s future looks bright! She might have a few challenges as she grows up, like other patients with diabetes, but her parents are doing an amazing job and she is thriving. Her hemoglobin A1C is already below 7% which is very difficult to achieve in a baby,” Dr. Cabrera Salcedo said.

When she left the hospital, Wendy felt prepared to care for her baby because of what the doctors at Norton Children’s Hospital had provided her: confidence and education.

“The doctors would motivate me by telling me that I was a good mother,” Wendy said. “They encouraged me to learn so that my family could be reunited.”