Miss-Delectable
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New thumb comes with new language for a deaf 4-year-old girl
The halls leading to the children's classrooms of the Western Pennsylvania School for the Deaf in Edgewood are adorned with the artwork of youngsters. Tiny paper hands, the colorful outlines traced in crayon and cut with scissors, bear the carefully scrawled names of the children who created them.
The hands speak to you.
Dr. Nancy Benham, coordinator for the parent-infant program at the school, walks down a hall into the classroom where her 4-year-old daughter, Grace, is learning American Sign Language.
Grace is deaf, but that isn't a disadvantage here. What sets Grace apart is her right hand, a hand that is almost essential for communicating in sign language.
"Do you want to show us your new thumb?" Dr. Benham asks her daughter in sign language.
Grace shyly shakes her head and hides behind her mother's leg.
Nancy and Roy Benham, of Plum, adopted Grace a little over two years ago. Born in Korea, the child was pitted against a number of obstacles.
She was deaf. She was born with a heart defect and a cyst at the base of her spine that impaired her ability to stand and walk.
And she was born with a condition called radial aplasia, meaning she did not have a right thumb or radius, the long bone behind the thumb at the wrist. Her little hand, with its four fingers, was curled up and positioned near the midsection of her arm.
But the Benhams, who had no children, had no reservations about the adoption. Dr. Benham, 43, who earned a Ph.D. in educational administration, had been involved in deaf education for 19 years. She and Mr. Benham, 44, a funeral director, were confident that they could provide the perfect home for Grace.
Grace's heart defect was corrected when she was 6 months old. Doctors at Children's Hospital removed the cyst in October 2005.
The deafness?
"There is nothing wrong with her being deaf," said Dr. Benham. "She has a language, she has a culture. We use that language in the home."
Signing is the third most-learned language in the United States. Grace picked it up quickly.
"Kids are very flexible, and they will use whatever is easiest for them at the moment," Dr. Benham said. "So if they have somebody who understands sign, and they can express that they want some more milk in sign, and they don't have the words attached to that language yet, then they're going to [sign]."
But many of the words and letters used in American Sign Language require a thumb. And while Grace could have signed with only her left hand, some of the words -- such as "book" and "family" -- are represented with two hands.
The Benhams heard that there were doctors capable of reshaping a hand, moving the index finger to where the thumb would be. It would require a number of surgeries and long, painful and frustrating recoveries.
"And you're never sure how it's going to take," Dr. Benham said. "It could be that it's not going to work. She could lose feeling. It could be that it technically dies and it would have to be removed. There were several risks.
"But signing is her language. That requires your hands."
Surgeon's challenge
Dr. Mark E. Baratz, an Allegheny General Hospital orthopedic surgeon who specializes in hands, was recommended to the Benhams by another doctor.
Dr. Baratz first saw Grace in September 2005.
"I have done lots of different operations to rebuild the thumb, to realign the thumb. It's one of the more common things that we do on children. But this was the first time that I did an operation on a child who couldn't speak, couldn't hear, and needed this hand, not only for eating, playing and working, but for communicating," said Dr. Baratz, who studied sign language when he was a medical student at the University of Pittsburgh. "So, for me, the stakes were higher."
He considered the alternatives and discussed them with the Benhams. Sometimes, for example, surgeons will substitute a big toe for a thumb. But that is usually just for the end of the thumb, and the surgery -- because it involves the amputation and reattachment of the digit -- can fail.
He settled on a transposition, relocating Grace's right index finger. The Benhams trusted him.
"He's a phenomenal hand surgeon," Dr. Benham said. "And he answered all of our questions, even when we asked them 10 million times."
One of the difficult things about being a hand surgeon, Dr. Baratz said, is that the work is right out in front of the patient every day.
"That is both a blessing and a curse," he said. "It's a curse because a person who has a hand deformity is very self-conscious about it. Many, many parents who have children whose hands are different at birth come to me and say, 'You have to do something. The hand isn't right.'
"What I do is try and establish what works and what doesn't work. I don't do an operation just for appearance, but an operation that affects function."
He's up against a culture uncomfortable with anything that's abnormal.
"That's not a good thing," Dr. Baratz said. "If you have a child and you come to me and say, 'You see this? His fingers don't look good. He's going to be teased.' And I say, 'You know what? He is.' But we're not going to do anything to hurt his function to make things appear better. That makes no sense."
Grace's parents explained to the little girl some of what the doctor would be doing and used one of her dolls as an example.
"She is a trouper," Dr. Benham said. "The only time she really complained was after one of the surgeries when her cast, when it dried, was too tight. She cried.
"But it didn't slow her down. She was in a cast or a splint, basically, for a year, playing and learning just like any other child. She wanted to be doing what everybody else was doing."
'A little bit different'
From all indications, Dr. Baratz said, the operation has been a success. Though at first tentative, Grace has begun to employ her right hand -- and her new thumb -- in her daily routine. The other night, her mother said, they were sitting at the dinner table, and Grace used her right hand to pick up a French fry. Both parents noticed it and broke into wide grins.
"I get really amazed almost every day," Dr. Benham said. "When you look at her hand, her new thumb really looks very much like a thumb. People who don't know her would not think, 'Oh, you have an index finger stuck there.' "
Maryann Stefko, a coordinator at the school, has known Grace since the Benhams adopted her, and she has seen a change in the child.
"At first, she was very quiet, very cautious and very reluctant to sign," Ms. Stefko said. "What I've seen since she's been here is the total blossoming of a little girl. It really is like watching a bloom open up."
Grace is more enthusiastic about signing, more willing to use both hands, Ms. Stefko said, and now is "probably a little bit ahead of a typical 4-year-old."
"There is a chance she'll need additional surgery on the hand, but not on the thumb," Dr. Baratz said. "You take a digit that is supposed to do one thing and you have it do another thing, it may not grow as quickly as a thumb would grow, [or] it may grow more quickly. Sometimes it can grow at an angle. You're not really out of the woods with this until they're fully grown. There is some limited fine-tuning that has to be done."
Dr. Benham thinks back to when her daughter was learning to crawl. It was difficult, she said, to watch the child on her hands and knees with one arm so much shorter than the other and not really working.
"Her crawling looked like [that of] a soldier," Dr. Benham said. "She adapted. She doesn't really know [she's] different. Unfair? Some people would see it that way. We just think it's an amazing little girl that has learned how to do things that everybody else is doing. Sometimes she just has to do it a little bit different."
The halls leading to the children's classrooms of the Western Pennsylvania School for the Deaf in Edgewood are adorned with the artwork of youngsters. Tiny paper hands, the colorful outlines traced in crayon and cut with scissors, bear the carefully scrawled names of the children who created them.
The hands speak to you.
Dr. Nancy Benham, coordinator for the parent-infant program at the school, walks down a hall into the classroom where her 4-year-old daughter, Grace, is learning American Sign Language.
Grace is deaf, but that isn't a disadvantage here. What sets Grace apart is her right hand, a hand that is almost essential for communicating in sign language.
"Do you want to show us your new thumb?" Dr. Benham asks her daughter in sign language.
Grace shyly shakes her head and hides behind her mother's leg.
Nancy and Roy Benham, of Plum, adopted Grace a little over two years ago. Born in Korea, the child was pitted against a number of obstacles.
She was deaf. She was born with a heart defect and a cyst at the base of her spine that impaired her ability to stand and walk.
And she was born with a condition called radial aplasia, meaning she did not have a right thumb or radius, the long bone behind the thumb at the wrist. Her little hand, with its four fingers, was curled up and positioned near the midsection of her arm.
But the Benhams, who had no children, had no reservations about the adoption. Dr. Benham, 43, who earned a Ph.D. in educational administration, had been involved in deaf education for 19 years. She and Mr. Benham, 44, a funeral director, were confident that they could provide the perfect home for Grace.
Grace's heart defect was corrected when she was 6 months old. Doctors at Children's Hospital removed the cyst in October 2005.
The deafness?
"There is nothing wrong with her being deaf," said Dr. Benham. "She has a language, she has a culture. We use that language in the home."
Signing is the third most-learned language in the United States. Grace picked it up quickly.
"Kids are very flexible, and they will use whatever is easiest for them at the moment," Dr. Benham said. "So if they have somebody who understands sign, and they can express that they want some more milk in sign, and they don't have the words attached to that language yet, then they're going to [sign]."
But many of the words and letters used in American Sign Language require a thumb. And while Grace could have signed with only her left hand, some of the words -- such as "book" and "family" -- are represented with two hands.
The Benhams heard that there were doctors capable of reshaping a hand, moving the index finger to where the thumb would be. It would require a number of surgeries and long, painful and frustrating recoveries.
"And you're never sure how it's going to take," Dr. Benham said. "It could be that it's not going to work. She could lose feeling. It could be that it technically dies and it would have to be removed. There were several risks.
"But signing is her language. That requires your hands."
Surgeon's challenge
Dr. Mark E. Baratz, an Allegheny General Hospital orthopedic surgeon who specializes in hands, was recommended to the Benhams by another doctor.
Dr. Baratz first saw Grace in September 2005.
"I have done lots of different operations to rebuild the thumb, to realign the thumb. It's one of the more common things that we do on children. But this was the first time that I did an operation on a child who couldn't speak, couldn't hear, and needed this hand, not only for eating, playing and working, but for communicating," said Dr. Baratz, who studied sign language when he was a medical student at the University of Pittsburgh. "So, for me, the stakes were higher."
He considered the alternatives and discussed them with the Benhams. Sometimes, for example, surgeons will substitute a big toe for a thumb. But that is usually just for the end of the thumb, and the surgery -- because it involves the amputation and reattachment of the digit -- can fail.
He settled on a transposition, relocating Grace's right index finger. The Benhams trusted him.
"He's a phenomenal hand surgeon," Dr. Benham said. "And he answered all of our questions, even when we asked them 10 million times."
One of the difficult things about being a hand surgeon, Dr. Baratz said, is that the work is right out in front of the patient every day.
"That is both a blessing and a curse," he said. "It's a curse because a person who has a hand deformity is very self-conscious about it. Many, many parents who have children whose hands are different at birth come to me and say, 'You have to do something. The hand isn't right.'
"What I do is try and establish what works and what doesn't work. I don't do an operation just for appearance, but an operation that affects function."
He's up against a culture uncomfortable with anything that's abnormal.
"That's not a good thing," Dr. Baratz said. "If you have a child and you come to me and say, 'You see this? His fingers don't look good. He's going to be teased.' And I say, 'You know what? He is.' But we're not going to do anything to hurt his function to make things appear better. That makes no sense."
Grace's parents explained to the little girl some of what the doctor would be doing and used one of her dolls as an example.
"She is a trouper," Dr. Benham said. "The only time she really complained was after one of the surgeries when her cast, when it dried, was too tight. She cried.
"But it didn't slow her down. She was in a cast or a splint, basically, for a year, playing and learning just like any other child. She wanted to be doing what everybody else was doing."
'A little bit different'
From all indications, Dr. Baratz said, the operation has been a success. Though at first tentative, Grace has begun to employ her right hand -- and her new thumb -- in her daily routine. The other night, her mother said, they were sitting at the dinner table, and Grace used her right hand to pick up a French fry. Both parents noticed it and broke into wide grins.
"I get really amazed almost every day," Dr. Benham said. "When you look at her hand, her new thumb really looks very much like a thumb. People who don't know her would not think, 'Oh, you have an index finger stuck there.' "
Maryann Stefko, a coordinator at the school, has known Grace since the Benhams adopted her, and she has seen a change in the child.
"At first, she was very quiet, very cautious and very reluctant to sign," Ms. Stefko said. "What I've seen since she's been here is the total blossoming of a little girl. It really is like watching a bloom open up."
Grace is more enthusiastic about signing, more willing to use both hands, Ms. Stefko said, and now is "probably a little bit ahead of a typical 4-year-old."
"There is a chance she'll need additional surgery on the hand, but not on the thumb," Dr. Baratz said. "You take a digit that is supposed to do one thing and you have it do another thing, it may not grow as quickly as a thumb would grow, [or] it may grow more quickly. Sometimes it can grow at an angle. You're not really out of the woods with this until they're fully grown. There is some limited fine-tuning that has to be done."
Dr. Benham thinks back to when her daughter was learning to crawl. It was difficult, she said, to watch the child on her hands and knees with one arm so much shorter than the other and not really working.
"Her crawling looked like [that of] a soldier," Dr. Benham said. "She adapted. She doesn't really know [she's] different. Unfair? Some people would see it that way. We just think it's an amazing little girl that has learned how to do things that everybody else is doing. Sometimes she just has to do it a little bit different."