1st in the world for the young
By Liz Kowalczyk | GLOBE STAFF JUNE 17, 2013
Boston Children’s Hospital is announcing Monday that it has started the world’s first hand transplant program for youngsters, with the goal of restoring limbs to victims of devastating infections, fires, or accidents.
A hospital ethics committee approved the program following a two-year review, and doctors said they will begin evaluating children immediately.
Initially, they will consider only children who are missing both hands and who are at least age 10, believed to be old enough to understand the operation. Doctors said they don’t know how many children would qualify, but believe the number is small.
Under guidelines established by the hospital ethics committee, doctors must obtain a child’s “assent’’ for the transplant, in addition to getting consent from parents.
The four-page assent form is written in simple child-like language. It explains that the youngster will have to “work hard’’ after surgery to learn to use the new hands, that “bad things’’ such as doctors having to take off the hands could happen, and that “no one will get mad at you’’ for saying no to surgery.
The surgery, which usually involves transplanting part of the arm as well, has become widely accepted in the medical community during the past decade for adult amputees. There have been nearly 70 operations worldwide, three of those in Boston — at Brigham and Women’s and Massachusetts General hospitals.
Offering the surgery to children is “a natural progression in advancing the field’’ of hand and face transplants, in which Boston has emerged as a leader, said Dr. Amir Taghinia, surgical director of the hand transplant program at Children’s.
Still, the ethical issues, considerable for adults, are even thornier for younger patients who have a more limited understanding of the risks they are undertaking.
As with adults, children who receive hand transplants will have to take drugs to suppress their immune systems for the rest of their lives. The drugs keep the body from attacking the donor tissue, but the medications increase the chances of infections and cancer.
“This is reasonable but it’s a very close call, given the problems with immune suppressing drugs,’’ said Arthur Caplan, a bioethicist at New York University.
A child has never been transplanted with a hand from an unrelated donor, doctors said. They knew of one case in Malaysia where a child was transplanted with a hand from an identical twin who had died of heart problems. Because they were twins, the child who got the hand did not require immunosuppressant drugs.
Children who may qualify for the surgery have lost their hands to sepsis, an illness in which the body has a severe response to an infection, or been injured in lawn mower accidents or mauled by dogs, doctors said. Transplant surgeons also will consider children who were born without hands, though it is unclear whether their brains could adapt and learn to use limbs they have never had.
Some children use prostheses, but mechanical hands do not allow them to feel what they touch or grip objects as one would with a natural hand.
“Someone has to tie your shoelaces and feed you,’’ Taghinia said. “Brushing your teeth can become difficult because you don’t know how hard you’re pushing.’
Children could end up taking the immune-suppression drugs longer than adults, and may need higher doses because their immune systems react more strongly. While the risks of immunosuppressants are clearly warranted in cases of life-saving heart, liver, and other organ transplants, a hand transplant is not necessary for survival.
Dr. William Harmon, Children’s medical director for hand and kidney transplants, said that the medications have improved over time, and that extensive experience with kidney transplants has shown that most children do well. Ninety-six to 97 percent of patients are alive five years after the transplant.
“We are going to monitor things very carefully,’’ he said.
Caplan said that in addition to the assent forms, the hospital also needs tough ongoing monitoring of the transplant cases. “They have to watch everything very closely for complaints from the child and from the parents,” he said. “The review becomes very important in these kinds of experiments. Do they have people who can stand up to the principal investigator and the surgeon and say no?’’
The hospital said it has set up a special data and safety monitoring board to oversee the program.
Finding donors also will be challenging, because so few children die, said Richard Luskin, executive director of the New England Organ Bank. There also is a narrower range of matches for children in terms of age and size of the hands than there is for adults, he said. Attaching an adult-size hand to a child would look strange, he said.
The hospital will provide the surgery and first three months of care free, and seek payment from insurers for follow-up care and medications, but the consent and assent forms point out that families do face some financial risk for future care.
Harmon said he expects that transplanted hands would grow with the child, as is the case for transplanted kidneys, hearts, livers, lungs, and intestines, but it is unclear how long the hands would last. Sometimes children require a second organ transplant as adults.
Dr. Bohdan Pomahac, director of plastic surgery transplantation at the Brigham, a leader in face and hand transplant surgery, said children’s nerves regenerate more quickly than those in adults. So their transplanted hands could work better.
“The chances are these patients will do really well,’’ he said.
Liz Kowalczyk can be reached at kowalczyk@globe.com.
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