One year after a neurosurgeon separated them by cutting through a section of brain, Carl Aguirre says “Wow!” as he whizzes a toy truck off the tray of his high chair and his brother Clarence holds his nose to let his mother know his diaper is dirty.
After “starting their life over,” the formerly conjoined 3-year-old Filipino boys have been amazingly free of significant complications, doctors say. Clarence is about to take his first steps and therapists say Carl will soon follow.
“When they emerged from the OR as separate boys, it was almost as if that was their second birth,” said Dr. Robert Marion, the boys’ pediatrician. “Their motor skills are what you’d expect of a 1-year-old. They’re starting to walk. They’re playing appropriately in the way that a 1-year-old would. Their speech, also, is like that of a 1-year-old.”
Until last Aug. 4, when they underwent the fourth in a series of major operations at the Children’s Hospital at Montefiore Medical Center in the Bronx, Carl and Clarence had been unable to sit up, stand straight or see each other’s face. Joined at the top of their heads, they were limited to lying on their backs, which stunted their development and subjected them to chronic pneumonia caused by inhaling food.
“They were going to die,” Marion said. “And now seeing them with unlimited potential, it’s the most gratifying experience I’ve ever had in medicine.”
The boys and their mother, Arlene, came to New York in 2003, when Montefiore agreed to take the boys’ case for free — it has cost more than $3 million so far — and the Blythedale Children’s Hospital in Valhalla agreed to donate housing and therapy.
The Children’s Hospital team of neurosurgeon Dr. James Goodrich and plastic surgeon Dr. David Staffenberg separated the boys in a gradual “staged” approach, pushing apart their brains and dividing the blood vessels in four operations from October 2003 to August 2004. In between, the boys were given time to heal. It was a departure from the more common single marathon operation.
During the final operation, the surgeons found that the boys’ brains, which scans had indicated were abutting but separate, were actually shared and seamless at one point. Dreading whatever complications he might cause, Goodrich studied and consulted and finally found a place to cut where veins seemed to go in opposite directions.
“I am not a religious person,” Goodrich said last week. “But I do think there was something guiding us along there.”
Marion said Carl suffered some seizures in the month after the separation, but Goodrich said his principal fears — neurological problems and liquid on the brain — did not develop.
Walking and laughing
During a reporter’s recent visit to Blythedale, Clarence walked proudly, holding onto a therapist with one hand and pushing his stroller with the other. He was so energetic that at one point he stepped out of his pants and staffers had to find him a belt.
Meanwhile, Carl stood, a bit unsteadily, to play a bead game on a table.
Later, the boys laughed as they tumbled down a padded slide together. Though their skulls have not yet been reconstructed — doctors don’t want to interrupt their therapy — and specially designed plastic helmets haven’t fit well, the doctors say the boys’ heads are protected well enough by their bandages even for horseplay.
Arlene Aguirre tried to hide while she watched her sons’ therapy session, because when they see her the boys want to do nothing but cuddle.
“Both of them want my attention all the time,” she said. “But it’s very exciting that I have to deal with two children. ... Before the separation, I was thinking: ‘Will I ever see them again?”’
She said she is encouraged when she hears Clarence say “yogurt” and call his brother by name. Carl says “walk” and “mama” and both boys use sign language to convey such phrases as “please more eat.”
Aguirre said she expects to move from Blythedale soon and set up a household with the boys, and hopes to eventually return to the Philippines.
“My friends and family, I want to share the boys with them,” she said. “It will be so exciting to go back there, holding one boy with each hand.”
The success of the operation has brought honors for Goodrich and Staffenberg, although Goodrich says the best prize he’s received is a Montefiore parking space. They are constantly invited to speak or write about the procedure, which has been published in journals for neurosurgery, plastic surgery and anesthesia.
The surgeons recommend their “staged” approach not just for conjoined twins but for other severe craniofacial cases. In the only separation of similar “craniopagus” twins in the U.S. since the Aguirre boys, surgeons at Johns Hopkins used the marathon approach on 1-year-old German girls and only one survived.
Goodrich said an upcoming procedure overseas — he wouldn’t say where — will be performed their way.
He said he initially tried to keep an emotional distance from the boys, but confessed “you can’t go through something like we did and not get attached. You can’t be around them and not love them.”
Staffenberg said he recently came up behind Clarence, who was walking down a hallway while holding a therapist’s hand.
“Clarence turned around and looked at me and put his other hand out for me,” Staffenberg said. “I don’t think at any point during all the surgery I would have imagined that kind of situation. When you get the moment when they reach out for your hand, it’s unbelievable.”