New Haven baby fighting Otahara Syndrome, a rare disorder

NEW HAVEN, Conn. (WTNH) — A two-and-a-half-month-old New Haven baby boy was home less than a week before returning to the hospital, diagnosed with a rare disorder. Right now, his doctors are not sure when he’ll be home again.

Kamren Rodriguez is like any baby, sleeping for hours at a time, but he is not in his room at home. He is in the pediatric intensive care unit at Yale-New Haven Children’s Hospital, with his parents always nearby.

“We live here,” said Denise Melendez and Johnny Rodriguez. “We haven’t been home since New Year’s Eve.”

“He was your perfect seven-pound baby,” they said.

Nicknamed Kam Kam, he shows little sign of the rare, devastating condition of which he was diagnosed.

“Your normal brainwave should be a normal wave,” said Melendez. “With Kamren’s it’s basically a flat line and then it goes like a burst, then suppresses into a flat line.”

It’s a distinct trait of Otahara Syndrome, a neurological disorder. Newborns like Kamren develop seizures, usually within three months after birth.

“If it was not for knowing what his EEG looks liked, which has a very characteristic pattern in Otahara Syndrome that we call burst suppression and seeing the seizures that he had, you wouldn’t be able to tell the difference between him and any normal baby,” said Dr. Francine Testa.

Dr. Testa is his pediatric neurologist. 

“Kamren is actually doing quite well in terms of seizure control right now, but that is something often temporary,” said Dr. Testa. “What happens to these children overtime is that they make very little developmental progress, and they also typically develop spasticity and their muscles get very, very tight.”

There is no cure for Otahara.

“Just be prepared for the good or the worse, just in case,” said Rodriguez. “That’s why I take it day-by-day, be with him as much as I can.”

Prayers keep them strong, as does the precious time they spend with him.

“He looks for you,” said Melendez. “He hears Mommy and Dad’s voice, normal hand movements. He is finding things with his hands now.”

A gift they hold onto as Kamren fights back with every breath he takes.

Up until about 10 years ago, Dr. Testa says there were only about 20 or 30 cases reported. Treatment is limited with poor responses.

The family has set up a gofundme site for Kamren. There is also a fundraiser this Sunday, March 8, at Roller Magic Skating Center with door prizes and raffle. It’s $10 per ticket.

To visit Kamren’s gofundme page, click here.

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