Two Carson City babies operated on for rare disorder | NevadaAppeal.com

Two Carson City babies operated on for rare disorder

by Teri Vance
photo by Cathleen AllisonChristina Ortega, 7 months, left, and Dakota Pacheco, 8 months, play on Monday afternoon in North Casrson. Both boys had surgery to correct a craniosynostosis, a premature closure of the skull bones.
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Two weeks after having a skull operation, 8-month-old Dakota Pacheco was back at home Monday giggling while bouncing in his swing.

“He’s back to his normal self,” said his mother, Crystal Sexton of Carson City.

Dakota was diagnosed in June with a rare disorder called craniosynostosis, in which the baby’s skull closes prematurely before the brain is done growing.

Sexton had never heard of the disorder and did not give much thought to the ridge that creased her baby’s forehead to his nose.

However, in a serendipitous twist of fate, her friend and neighbor Kristin Grajeda’s 7-month-old baby Christian Ortega underwent surgery for the same disorder earlier this year.

“I saw the bone ridge in front (of Dakota’s head) and I wondered why it was there,” Grajeda said. “I had never seen a baby with that before.”

Grajeda suggested that Sexton look into the possibility that Dakota also suffered from craniosynostosis, which affects about one out of every 2,000 babies.

She did, and found her baby was one of them.

“It’s so weird to know somebody so close with the same thing,” Grajeda said.

Christian, who underwent surgery at three months, had the more common sagital synostosis with the ridge on the back of his head.

“It was frightening for him to have to have surgery at such a young age and especially on his head,” Grajeda said.

Dakota had a more rare form, metopic synostosis with a ridge down his forehead. He went in for surgery on July 13 and was released July 16 and returned home to his mother, father Jason Pacheco and sister Brianna Sexton, 3.

“The only real problem he has now is his sleeping,” Sexton said. “Every night, he’s up every three or four hours.”

If left untreated, the disorder could lead to facial deformities, hearing and sight problems and mental disabilities.

Treatments can include headbands or other reconstructive devices as an option to surgery. The operation costs between $20,000 and $30,000 and both children were covered under Medicaid.

The two toddlers are scheduled to meet with their neurosurgeon Dr. Michael Edwards of Washoe Medical Center on Aug. 3. Sexton and Grajeda plan to present him with a thank-you note and a picture of the two boys together.

For more information on craniosynostosis go to http://www.caps2000.org