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Wednesday
May292013

Policy Makes Lung Transplant Less Likely for 10-Year-Old

Courtesy Murnaghan Family(NEWROWN, Pa.) -- If Sarah Murnaghan were 12 years old, she would be at the top of the adult lung transplant list because she only has weeks to live and a lung transplant would as-good-as cure her of cystic fibrosis.

But she's not 12, and if she doesn't get new lungs, she might not even make it to 11.

"We are not asking for preference for Sarah, we are asking for equality," Sarah's mother, Janet Murnaghan, said in a press release. "We strongly believe Sarah should be triaged based on the severity of her illness, not her age."

The Murnaghan family of Newrown, Pa., is fighting a little known organ transplant policy that is effectively pushing 10-year-old Sarah to the bottom of the adult transplant waiting list because it mandates that adult lungs be offered to all adult patients before they can be offered to someone under 12 years old.

Sarah has been on the pediatric waiting list for new lungs for 18 months, but since there are so few pediatric organ donors, there hasn't been a match. She's been living at Philadelphia Children's Hospital for two months connected to a machine to help her breathe, Sarah's aunt, Sharon Ruddock, told ABC News.

There were only 11 lung donors between 6 and 10 years old and only two lung transplants in that age group in 2012, according to an Organ Procurement and Transplantation Network statement.

However, since Sarah was eligible for an adult lung transplant, her family was both horrified and excited when her condition rapidly deteriorated earlier this month because they thought it meant she would get bumped to the top of the adult waiting list, Ruddock said.

"A week went by with nothing, no offers," Ruddock said. "They said, 'Well, you're not at the front of the line. It goes to all adults, and if all the adults turn them down, the lungs go to the kids.'"

Patients with cystic fibrosis, a genetic condition that damages the lungs, have an average life expectancy of 31 years old, said Dr. Devang Doshi, a pediatric lung specialist at Beaumont Children's Hospital in Michigan who has not met Sarah. But if they get a lung transplant, the condition is essentially cured.

"It's a very disheartening thing to hear and read about because you've got a child in desperate need of a transplant to survive...and people less qualified in terms of severity are able to get that organ instead of this child because of what's in place," Doshi said. "From a medical standpoint, we look at these types of hurdles and obstacles and sometimes get frustrated with the system."

So Sarah's family started an online petition on Change.org to persuade the Organ Procurement and Transplantation Network to change its policy. So far, they've gathered about 40,000 signatures.

The organization, which falls under the U.S. Department of Health and Human Services, responded on Monday that it can't make an exception for Sarah.

"OPTN cannot create a policy exemption on behalf of an individual patient, since giving an advantage to one patient may unduly disadvantage others," the statement read.

Doshi said he thinks children under 12 years old should be considered with the adult patients and awarded organs based on how severe their conditions are. Adult lungs may not perfectly fit child patients, but they can be used to save multiple children. One of his 6-year-old patients' got a partial lung donation from her mother several years ago in a last ditch effort to save her life.

Although adults make up the majority of the lung transplant waiting list, NYU Langone Medical Center's head bioethicist Art Caplan said children should be given priority if they're sicker than those adults, in part because children should be able to get more healthy years out of the lungs than adults.

"At the end of the day it's not so simple as kids versus adults," Caplan said, adding that chances of survival with the new organ and many other issues factor into the decision. "I think, however, there is a case that would say...most Americans -- as donors -- would want to give priority to children."

Doshi also said he thought that most adults would agree children should come first.

Sarah, who dreams of being a singer and a veterinarian, told her parents she wanted to fight for her life but not know how dire her situation was. However, Ruddock said she probably knows anyway. She lost her hearing a few weeks ago as a side effect of one of the antibiotics keeping her alive. At bedtime, she now asks her parents if she'll wake up.

Last Monday, Sarah's siblings and cousins gathered to say goodbye even though their parents didn't say that's what was going on, Ruddock said. On Friday, doctors told the family that they weren't sure Sarah would survive Memorial Day Weekend, but she pulled through.

"She was the little leader in our family. She would always get the little kids to put on a play for us," Ruddock said. "She's a bit of a pistol with a good personality to survive. She's not meek. She's a tough kid."

 

Copyright 2013 ABC News Radio

Wednesday
Jun222011

Girl, 5, Becomes Makeup Guru: How Young Is Too Young?

Jupiterimages/Thinkstock(NEW YORK) -- Madison Hohrine of Hurst, Texas, is an expert at applying lipstick, applying blush to the contours of her cheeks and applying mascara to her eyes. She is such an expert, in fact, that millions of people are logging online every day to watch and learn from one of Madison's makeup tutorials.

What they see when one of Madison's videos pops up may surprise them. Madison is just 5, but despite her youth, Madison is a makeup-applying Internet sensation.

Her tutorials on the video-sharing site YouTube, in which she covers everything from her favorite lipsticks, to what beauty products to buy, to how to bring out the colors in your eyes with shadow, have generated over 1.2 million clicks. Her video tutorial on the intricacies of makeup brushes alone was viewed more than 700,000 times.

Madison became fascinated by makeup as so many little girls do, by watching her mom.

"I started watching the YouTube videos and she would watch them with me," Madison's mother, Mary Hohrine, told ABC’s Good Morning America. "And one day she just asked me if she could record herself just to see what she would look like doing the video."

A few brushes of blush and rehearsals in front of the camera later, and Madison was hooked.

Popping up more and more frequently next to Madison's videos on YouTube are those of other young girls, ages 3 to 11, who, like Madison, are just as well-versed in mascara as they are the fairytales and alphabet letters more familiar to childhood.

That young girls are both using grown-up cosmetics and airing their makeup tips online has some parenting experts raising their eyebrows.

"It's weird for a little girl to know about contouring and makeup and angles," Dr. Logan Levkoff, author of the book Third Base Ain't What it Used to Be, said to GMA.

"We have a society where we sexualize little girls, almost from birth on," she said.

In an age where celebrities, makeover shows and beauty pageants are all the rage, the trend is putting back in focus the question of whether little girls and makeup is too cute, or too much too soon. Experts such as Levkofk believe the young girls offering makeup tips online, and the public's fascination with them, are the result of today's pressure-filled, beauty-obsessed society.

"The fact is all these Toddlers & Tiaras shows, the products, whether it's push-up bras for tween girls or shapeups for girls to firm their butts, all of this sends the message that our girls aren't good enough," said the New York City-based psychologist.

"It's the message that our girls aren't valued."

But that is a message Mary Hohrine feels confident her daughter is not receiving.

"She is a normal 5-year-old," said Mary. "It's the same thing as if she's playing dress-up."

Mary says that does not mean she is not aware of the dangers of letting her daughter grow up too fast and so enforces strict rules when it comes to allowing Madison free reign with the blush, eye shadow and lipstick she flaunts online.

Though makeup made her famous, Madison is not allowed to use products or wear any makeup on a daily basis.

"When she asks to be putting makeup on every day, then I'll be getting worried," said Mary.

Copyright 2011 ABC News Radio







ABC News Radio