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rg2020-12-03 12:42:05 иԇ ҪͶ

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Formerly conjoined twins doing well

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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 3yearold 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 youd expect of a 1yearold Theyre starting to walk Theyre playing appropriately in the way that a 1yearold would Their speech also is like that of a 1yearold"

Until last Aug 4 when they underwent the fourth in a series of major operations at the Childrens Hospital at Montefiore Medical Center in the Bronx Carl and Clarence had been unable to sit up stand straight or see each others 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 its the most gratifying experience Ive 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 Childrens Hospital in Valhalla agreed to donate housing and therapy

The Childrens 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

During a reporters 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 dont want to interrupt their therapy and specially designed plastic helmets havent 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 its 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 hes 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 US since the Aguirre boys surgeons at Johns Hopkins used the marathon approach on 1yearold German girls and only one survived

Goodrich said an upcoming procedure overseas he wouldnt say where will be performed their way

He said he initially tried to keep an emotional distance from the boys but confessed "you cant go through something like we did and not get attached You cant be around them and not love them"

Staffenberg said he recently came up behind Clarence who was walking down a hallway while holding a therapists hand

"Clarence turned around and looked at me and put his other hand out for me" Staffenberg said "I dont 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 its unbelievable"

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