Framework

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Dylan Catania's parents were preparing to take him home from the hospital after his birth when he had his first seizure. Doctors diagnosed him with a rare brain disorder that left the right side of his brain malformed and larger than the left.

PHOTOGRAPH BY: Francine Orr / Los Angeles Times

Jeff Catania, 60, falls asleep next to his 2-month-old son, Dylan. Jeff has donated blood three times in preparation for Dylan's brain surgery. During the operation Dylan will lose all his blood, about a soda can's worth, and it will be replaced by Jeff's.

PHOTOGRAPH BY: Francine Orr / Los Angeles Times

Jeff Catania wakes up and holds his son, Dylan, in the middle of the night. With feedings, medications and monitoring of the seizures, Jeff and his wife are up and down all night.

PHOTOGRAPH BY: Francine Orr / Los Angeles Times

Bella Catania, 9, tries to comfort her brother, Dylan, as he has a seizure in the arms of their mother, Ellen. Holding his head, Bella said: “Send the seizure to me.” Their father, Jeff, gives Dylan anti-seizure medication.

PHOTOGRAPH BY: Francine Orr / Los Angeles Times

The day is winding down in the Catania home. Jeff holds daughter Bella just before bedtime.

PHOTOGRAPH BY: Francine Orr / Los Angeles Times

Jeff Catania weighs his son, Dylan, before going to work. The family has been vigilant about Dylan's feeding schedule. He needs to gain weight before surgery.

PHOTOGRAPH BY: Francine Orr / Los Angeles Times

Ellen Catania, 47, crawls into bed with her son, Dylan, in the emergency room at UCLA. The family brought him to the ER because he was having trouble breathing because of a cold, and they feared it would affect his appetite and weight gain. They were afraid the surgery date would be pushed back.

PHOTOGRAPH BY: Francine Orr / Los Angeles Times

Less than 2 months old, Dylan Catania is weighed and measured by Albert Theus before an appointment with a pediatric neurologist at the UCLA Medical Plaza. Doctors wanted him to gain several pounds before surgery.

PHOTOGRAPH BY: Francine Orr / Los Angeles Times

The night before Dylan Catania's brain surgery, his weary father, Jeff, stands by his side at Mattel Children's Hospital UCLA.

PHOTOGRAPH BY: Francine Orr / Los Angeles Times

Dylan Catania is checked into Mattel Children's Hospital UCLA the day before his hemispherectomy. The "SA" in black marker means "surgical area."

PHOTOGRAPH BY: Francine Orr / Los Angeles Times

Electrodes placed on Dylan Catania's scalp measure brain activity during one in a series of pre-surgery exams. Dylan was having as many as 100 seizures a day.

PHOTOGRAPH BY: Francine Orr / Los Angeles Times

Dylan Catania's condition, hemimegalencephaly affects no more than two dozen children born each year in the U.S. Doctors told his parents that radical surgery offered the best chance for a normal life.

PHOTOGRAPH BY: Francine Orr / Los Angeles Times

Dylan Catania's mother, Ellen, and anesthesiologist Dr. Swati Patel try to comfort him as he has a seizure while being wheeled off to surgery. His parents later wrote: "As we were saying our goodbyes, he had another seizure as if to set our hearts and minds at ease and to say that we were doing the right thing."

PHOTOGRAPH BY: Francine Orr / Los Angeles Times

Ellen and Jeff Catania walk arm in arm as their nearly 3-month-old son, Dylan, is taken into surgery. The couple know that the risky and invasive procedure could fail.

PHOTOGRAPH BY: Francine Orr / Los Angeles Times

Dr. Gary Mathern, right, a neurosurgeon and director of UCLA's Pediatric Epilepsy Program, operates on Dylan Catania. Mathern would remove most of the right side of Dylan’s brain in an effort to stop disabling seizures.

PHOTOGRAPH BY: Francine Orr / Los Angeles Times

Dr. Colin Buchanan, senior neurosurgery resident, left, assists as Dr. Gary Mathern operates on Dylan Catania.

PHOTOGRAPH BY: Francine Orr / Los Angeles Times

In a corner of the surgical waiting room, Ellen and Jeff Catania are surrounded by members of their family. "The nightmare is over," the surgeon told the Catanias after completing the more than seven-hour operation. The family said a prayer of thanks.

PHOTOGRAPH BY: Francine Orr / Los Angeles Times

Anesthesiologist Dr. Swati Patel stands next to Dylan, who is tethered to monitors, in the recovery unit after surgery.

PHOTOGRAPH BY: Francine Orr / Los Angeles Times

Dylan Catania sucks on his pacifier in the post-anesthesia care unit moments after surgery.

PHOTOGRAPH BY: Francine Orr / Los Angeles Times

Jeff Catania, who has not left son Dylan's side since the baby's hemispherectomy, catches a quick nap in the pediatric intensive care unit at Mattel Children's Hospital UCLA.

PHOTOGRAPH BY: Francine Orr / Los Angeles Times

A week after his operation at Mattel Children's Hospital UCLA, Dylan Catania is cared for in the pediatric intensive care unit. His bandages were removed, exposing about 50 staples used to close his surgical incision.

PHOTOGRAPH BY: Francine Orr / Los Angeles Times

Ellen Catania comforts her daughter, Bella, 9, in the pediatric intensive care unit after Bella sees the metal staples in her brother’s head for the first time.

PHOTOGRAPH BY: Francine Orr / Los Angeles Times

Ellen Catania, right, attempts to comfort her feverish son as he cries days after his brain operation. Doctors said he probably had a bacterial infection, one of the risks after surgery. Dottie Savka, a radiology nurse, prepares Dylan for an MRI.

PHOTOGRAPH BY: Francine Orr / Los Angeles Times

Dylan Catania plays with his Betty Boop toy. Before surgery, Dylan was heavily sedated to control his seizures and rarely seemed alert.

PHOTOGRAPH BY: Francine Orr / Los Angeles Times

Dr. Mathern and Jeff Catania joke as they speak about Dylan, who is recovering from his infection. His parents' mood has lifted, but it would still be weeks before they could take him home.

PHOTOGRAPH BY: Francine Orr / Los Angeles Times

More than a month after his surgery, Dylan Catania watches Liticia Campos clean his hospital room. His parents said they have noticed major changes in his awareness and reaction to the world around him.

PHOTOGRAPH BY: Francine Orr / Los Angeles Times

Forty days after his surgery, Dylan Catania was cleared to go home. Dr. Raman Sankar, chief of pediatric neurology at Mattel Children’s Hospital UCLA, takes photos to celebrate. Sankar, who had treated Dylan since shortly after his birth, had grown close to the Catanias.

PHOTOGRAPH BY: Francine Orr / Los Angeles Times

Finally home together, Bella Catania curls up next to her baby brother as their father, Jeff, watches over them.

PHOTOGRAPH BY: Francine Orr / Los Angeles Times

Dylan's nanny, Mimi Gevorgyan, works with him each day to build his strength. Doctors said that Dylan’s left hand and foot would remain slightly paralyzed and that he would probably have a blind spot on his left side.

PHOTOGRAPH BY: Francine Orr / Los Angeles Times

Ellen Catania holds Dylan, 11 months old, as she stands next to their Christmas tree. Since his surgery April 9, Dylan has remained seizure free.

PHOTOGRAPH BY: Francine Orr / Los Angeles Times

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Freeing Dylan

Dylan Catania was born with what his surgeon called “a big, bad brain.” Would severing half of it give him a chance at a normal life?

Times photographers Francine Orr and Don Kelsen spent months with Dylan Catania and his family, documenting his parents’ decision to go forward with surgery and the long weeks of recovery. Their video and photos give readers an intimate look at the journey. Read Molly Hennessy-Fiske story or view video.

2 Comments

  1. December 29, 2010, 8:43 pm

    [...] me of follow-up comments via email. Subscribe by email to this site /* */ /* */ PREVIOUS POSTFreeing DylanNEXT POSTIt's coming down to crunch time RELATED [...]

  2. May 19, 2013, 8:08 am

    Incredible, great work by the journalists and all the best to Dylan and his family

    By: jim.wells

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