Entries in Children's Hospital of Philadelphia (4)


Doctors Find Success Using Retooled HIV to Fight Leukemia

Christine Chardo Photography for The Tiny Sparrow Foundation(PHILADELPHIA) -- In April, Emma Brooke Whitehead’s leukemia seemed unbeatable.

Emma, a 6-year-old from Phillipsburg, Pa., had been fighting the disease for nearly two years and doctors at Children’s Hospital of Philadelphia said there were no standard treatments left.  So they took a gamble on a new, potentially groundbreaking treatment -- using HIV.

They removed millions of Emma’s disease-fighting white blood cells and used genetically altered HIV -- a virus that easily gets into human immune systems -- to turn Emma’s cells into a kind of immunological “directed missile,” specifically programmed to destroy the leukemia cells.  The cells were then returned to Emma’s body.

“All of the things that make the HIV virus able to cause disease have been removed from this particular virus whose only purpose is to put a gene into a cell,” said Dr. Stephan Grupp, a pediatric oncologist at CHOP who uses HIV to infiltrate the immune system. “There is no danger of infection and there is no longer the HIV virus.”

Kari Whitehead, Emma’s mother, said that initially after the treatment Emma became very ill -- she had a fever as high as 105 degrees -- and doctors warned the family that she might not make it through the night.

Grupp then gave the second grader a rheumatoid arthritis drug “off label.”  In arthritis, the drug was meant to block a specific part of the body’s immune reaction, part caused by white blood cells called T cells. In Emma’s case, it blocked the side effect of the cancer treatment. In just 12 hours, she stabilized.

“She was the first child in the world they tried it on and they told us they didn’t know what to expect,” Whitehead told ABC News. “They do feel now that the arthritis drug that they used will keep the kids in the future from getting any where close to that [sick].”

Grupp says that Emma, now eight months past her treatment, is in complete remission.

“She has no leukemia in her body for any test that we can do -- even the most sensitive tests,” he said. “We need to see that the remission goes on for a couple of years before we think about whether she is cured or not. It is too soon to say.”

He said that the treatment is being tried experimentally at two hospitals and was intended for childhood leukemia that has returned and no longer responds to chemotherapy. He said doctors hoped the T cell treatment would eventually replace bone marrow transplants.

“This treatment was really her [Emma's] only chance,” Grupp said. “She has been treated with extended chemotherapy and she wasn’t getting any better. … For me, it’s incredible.”

Whitehead said Emma, now 7, looked and felt “amazing” and had reunited with her dog Lucy.

“There is a big difference,” she said. “She has a ton of energy. She’s back with her class. She was even able to play a little bit of soccer. So she’s doing wonderful right now.”

Copyright 2012 ABC News Radio


Mentally Disabled Girl May Get Kidney Transplant After All

Keith Brofsky/Thinkstock(PHILADELPHIA) -- Chrissy Rivera, the mother of the 3-year-old girl who was initially told by a doctor at Children's Hospital of Philadelphia that he would not recommend a kidney transplant for her mentally disabled daughter, is "hopeful" the hospital will help after an outcry of indignation online.

More than 37,000 online supporters petitioned after Rivera had blogged about a doctor who called her daughter "mentally retarded" and said he would not recommend transplantation.

Rivera met with Children's Hospital of Philadelphia doctors Friday to see if Amelia "Mia" Rivera, who has Wolf-Hirschhorn syndrome, would be eligible for a kidney. It is up to a larger transplantation committee to decide if the girl qualifies.

"They are moving us through the steps," said Rivera, a 35-year-old New Jersey high school teacher who has two other children, ages 11 and 6. "It is not a 'yes' or a 'no' at this point. But, yes, I am hopeful."

Children's Hospital of Philadelphia had no immediate comment on these developments.

Mia's complex genetic disorder results in severe mental and physical impairments, and specialists have said that without a transplant, Mia would die within six months to a year.

"We had a positive meeting with the nephrologist and the head of nephrology and nursing," said Rivera. "They took us through the steps and told us the risks. No decision has been made, but it's a process...that anybody has to go through."

"I didn't see any red flags at the meeting," she said. The Riveras will meet again with doctors from Children's Hospital of Philadelphia in March to review the girl's case.

In the meantime, Mia is "doing very well," said her mother. "She is very healthy."

The little girl's plight received national media attention when supporters petitioned the hospital through, which successfully battled Bank of America over its $5 debit card fee and Verizon over its online payment fee.

"The fact that CHOP [Children's Hospital of Philadelphia] is reconsidering Amelia's surgery is a remarkable testament to the potential of online campaigns to literally change people's lives," said Benjamin Joffe-Walt, spokesman for

"It's positive and awesome," said Rivera. "We definitely appreciate everything."

Rivera blogged about what she said was her daughter's transplant "rejection" two weeks ago.

The Riveras said a doctor at Children's Hospital had initially advised against a kidney transplant "because she was mentally retarded."

Rivera said the doctor also mentioned the medication that Mia would have to take for the rest of her life -- and "how important it was she take it -- and who would make her take it when we weren't around anymore?"

"Everyone should be treated equally," she said at the time. "This is outrageous."

When the media first reported the story two weeks ago, the hospital would not respond to questions about the Rivera case, citing privacy laws, but it provided a prepared statement, which read: "The Children's Hospital of Philadelphia does not disqualify potential transplant candidates on the basis of intellectual abilities. We have transplanted many children with a wide range of disabilities, including physical and intellectual disabilities. We at Children's Hospital of Philadelphia are deeply committed to providing the best possible medical care to all children, including those with any form of disability."

Wolf-Hirschhorn syndrome, caused by a missing part of the short arm of chromosome 4, occurs in about one in 50,000 live births. Disabilities can vary from child to child but can include seizures, hearing loss and eye malformations, as well as kidney, brain and skeletal abnormalities. Heart disease and frequent lung infections and immune deficiencies have also been reported.

Patients can be denied an organ transplant for a variety of reasons, according to the American Society of Transplant Physicians. Transplantation will not be offered to those would could be harmed by the surgery itself or by the immune-suppression that is required to prevent organ rejection.

Patients with weak immune systems or a high risk of infection, such as some children with Wolf-Hirschhorn syndrome, cannot be immunosuppressed, according to those guidelines.

Some doctors have reported that patients with Wolf-Hirschhorn syndrome have difficulty with anesthetics, because their heads and mouths tend to be small, making it hard to place a breathing tube during surgery.

Patients with severe heart disease may have an unacceptably high risk during surgery. Also, those who are not expected to live five years may also be denied a kidney transplant.

Patients with severe intellectual disabilities may be considered for transplant if the benefits outweigh the potential harm, say the guidelines.

Copyright 2012 ABC News Radio


Children's Health Negatively Impacted by Recession, Study Says

Photo Courtesy - Getty Images(PHILADELPHIA) -- More than 15 million children are living in poverty, according to a new report released Monday by the PolicyLab at Children's Hospital of Philadelphia.

According to the report, which focuses on the effects of the recession on children's well-being, short-term periods of poverty can negatively affect the long-term health of a child.  Additionally, poor nutrition continues to contribute to the growing problem of childhood obesity, given the growing number of food insecure households in the U.S.

Pediatric hospitals have also reported increased cases of physical abuse.  Meanwhile, researchers are concerned that maltreatment of children "will spike as the recession comes to an end."

Authors of the study say they are hoping that federal, state and city governments establish adequate access to "safety net" programs to help combat the negative effect of the recession.

Sen. Bob Casey, D-Pa., is expected to discuss the report in a congressional briefing Wednesday.

Copyright 2010 ABC News Radio


Hunger Still at Record Levels, Worst in Urban Areas, Single-Parent Households

Photo Courtesy - Getty Images(WASHINGTON) -- The United States Department of Agriculture says hunger across the U.S. stood at a record level in 2009, remaining "essentially unchanged from 2008 to 2009."  The latest statistics show the most severe hunger was "somewhat less prevalent" in December.

Children were hungry at some point during 2009 in 4.2 million households.  Food insecurity rates were much higher in households headed by single parents and among black and Hispanic households.  It's also more common in urban areas than it is in rural or suburban neighborhoods.

A new report from PolicyLab at Children's Hospital of Philadelphia finds economic conditions such as the wild economic ride of the last year-and-a-half can contribute to such problems.  The authors of the report say the recession that just ended, at least in technical terms, is too recent for them to assess its affect on hunger.  There is,however, evidence that previous recessions have had an impact on children's health.  The study finds even short-term bouts of poverty can have long-term health consequences. 

In addition to food insecurity, the PolicyLab research finds about 43 percent of families with children report difficulty affording stable housing.

Copyright 2010 ABC News Radio

ABC News Radio