“I’m sorry to tell you this, but we have to admit your baby into our pediatric intensive care unit (PICU).” 

The words of the emergency department nurse at Johns Hopkins All Children’s Hospital were hard for the parents of 6-month-old Cooper to take in.

“It caught us completely off guard,” says Cooper’s mom, Christiana. 

In fact, the last few days had been a whirlwind for this family from Fishers, Indiana. Christiana and Jonathan, Cooper’s dad, had traveled to Florida with their son and 2-year-old daughter, Sawyer, to participate in a best friend’s wedding.

Both kids had seemed a little under the weather earlier that week, but it was nothing that concerned them enough to keep the family from traveling. The wedding was beautiful, and the next day offered a chance for the family to rest before traveling back home the following day. 

What happened next would change everything. 

Cooper, typically a happy-go-lucky baby, became fussy and began to throw up incessantly. He had been losing fluids at a rapid rate for more than 24 hours. He had developed a high fever. 

The family rushed Cooper to the Johns Hopkins All Children’s Emergency Center in St. Petersburg, Florida. Cooper was diagnosed with COVID-19 and rhinovirus. But an additional test revealed something else — Cooper’s sodium levels were alarmingly high.

He would not be traveling home anytime soon. 

Investigation and Discovery 

During his first days and weeks in the PICU, Cooper’s doctors focused not only on treating his infections, but on determining why he was losing so much fluid. 

Doctors learned the baby was also not gaining weight and growing as he should. Christiana had been working diligently with his doctors in Indiana in recent weeks to try to find feeding solutions that would allow him to retain more nourishment. 

“We had been concerned that he wasn’t gaining weight,” Christiana says. “The fact that he was losing so much food and fluid was starting to get stressful for us.” 

Could Cooper’s various health issues be somehow connected?

An advanced care team consisting of endocrinologists, nephrologists, hospitalists, and others were determined to help find answers for this baby. 

Within a few days, the endocrinology team was able to confirm that he had a condition called diabetes insipidus (DI). Unlike the more common diabetes mellitus (sugar diabetes), DI is an uncommon condition related to a naturally occurring hormone in the body called vasopressin. 

“That is often a first sign of diabetes insipidus,” says Supamit Ukarapong, M.D., medical director of Pediatric Endocrinology at Johns Hopkins All Children’s. “The body is simply not able to preserve water but just urinates it out. So that’s what causes the sodium levels to be dangerously high.” 

The bigger challenge was in determining exactly which type of DI Cooper had.

There are two types of diabetes insipidus: The most common type is Central DI, related to the pituitary gland’s inability to produce enough vasopressin.

But there is also a very rare type of DI, impacting as few as four to eight people out of a million. Nephrogenic diabetes insipidus occurs when the brain produces enough vasopressin, but the kidneys are not able to recognize it, often the result of an inherited genetic mutation. 

Cooper’s response to an infusion of vasopressin would also help provide important clues. 

Central DI, the more common form of diabetes insipidus, tends to respond positively to vasopressin. Urine output decreases. Sodium levels regulate.

But Cooper didn’t respond in that way. His sodium levels remained high. That made doctors even more inclined to believe he had nephrogenic diabetes insipidus. 

While waiting for genetic testing to help confirm the baby’s diagnosis, a surgeon implanted a gastrostomy tube (G-tube) through Cooper’s abdomen and into his stomach. This tube would allow Cooper to receive the nutrition, medications and fluids so vital to his recovery and growth. 

A G-tube can be a difficult decision for parents to make, but it began to make all of the difference for Cooper. 

“We feel so grateful to the nursing staff who took such care in teaching us all sorts of things about the G-tube and preparing us so well,” Christiana says. “I wish I could give every single nurse a Daisy Award.”

The Daisy Award recognizes exceptional nursing care and skill. 

After three weeks, genetic testing confirmed that Cooper had nephrogenic diabetes insipidus — a condition so rare that Ukarapong has seen only one other case in his entire career. 

Now Ukarapong and his team had the diagnosis. They knew how to treat it, both with fluids and with a diuretic that could increase the amount of water the body can reabsorb.

The third and final piece of the puzzle would be to make it all work together. Cooper needed a regimen that would make it safe for him to travel — and a routine that could help him continue to recover. 

It’s a delicate business … with cases like Cooper’s, too little water can lead to life-threatening dehydration. Too much could cause water intoxication. 

“Especially when dealing with a very rare disease, it can never be ‘business as usual,’” Ukarapong says. “You have to put your full attention to detail and to accessing all resources. That’s what can really make the difference.” 

For seven days (and nights), Ukarapong and his team measured everything that went into Cooper’s G-tube. They examined every diaper.

“Dr. Ukarapong is one of the most intentional people I’ve ever met,” Christiana says. “We felt he was constantly trying to solve the problem in a way that made sense for Cooper.” 

With time, there were more and more signs of progress. Cooper began to gain weight. He wasn’t spiking any more fevers. He was losing less fluid. His color improved. It became apparent this baby was feeling much better. 

After five long weeks, it was time to go home. 

Home 

The chapter that began as a fun trip to Florida and turned into a frightening hospital stay was finally coming to a close for this family.

Cooper returned home with a new diagnosis and a “new normal” — a G-tube, at least for now.

All Children’s experts were able to communicate the nuances of his care to a supportive care team of experts in Cooper’s hometown.

As he grows older, his parents will teach him about his rare condition and arm him with the knowledge to manage it.

They’ll teach him that there are no limits to reaching for his dreams. 

For today, he is as happy as a clam, loving life with his adoring big sister. 

Perhaps the next trip to Florida will be as simple as sun and sand.