Argumentative Unit Introduction - Text Set (Groups of 3)
Argumentative Unit Introduction - Text Set (Groups of 3)
Name: ________________________________ Hr:____
Article title, date, and author: _________________________________________________________
__________________________________________________________________________________
DIRECTIONS: Each member will receive a different article. You will become an expert on your article. Read and annotate your article using Post Its. DO NOT WRITE ON CLASS TEXT SET! Your Post Its will be placed next to number 1. Answer 2, 3, 4, and 5 below. Include the question in the answer. Share out with your group. Write the MOST important evidence on the BACK of your sheet, along with the MLA citation. You will need this information for your argumentative essay.
1. Post-it annotations go here: (at least 4)
2. Write 3 important pieces of textual evidence from the article.
A.
B.
C.
3. A Golden Line is the BEST and MOST IMPORTANT line in the article. The Golden Line may be a startling fact, a fascinating expert opinion, a summation of the author’s claim or some other appealing line. Write a Golden Line for your article.
4. Why did you choose the Golden Line above? List three insightful reasons why this is the most important line. Be specific and include depth in your insight.
A.
B.
C.
5. Finally, create one ARGUMENTATIVE CLAIM and its counter argument based on the article. Your claim can be in support or refutation of the article. The claim must include a strong opinion. Take a stand.
A. Claim:
B. Counter-argument (How would opponents respond):
More Babies Being Born to Be Donors of Tissue By GINA KOLATA, Published: June 4, 1991, New York Times
At about 8 o'clock this morning, doctors at the City of Hope Medical Center in Duarte, Calif., plan to transplant bone marrow into Anissa Ayala, a 19-year-old girl who is dying of leukemia. The marrow will come from her baby sister, Marissa. Their parents say they conceived Marissa to provide bone marrow to save Anissa's life.
Doctors and ethicists say this is the first time a family has publicly admitted conceiving a child to serve as an organ donor. But many others have done so privately. Parents have had babies to provide bone marrow for siblings and relatives or even, in one case, a kidney. Some parents have sought prenatal diagnosis to insure that the fetus had genetically compatible tissues necessary to serve as a donor, intending to abort it if not.
Debate Over Ethics In a recent survey of bone marrow transplant centers, 40 cases were found in which families had confided to doctors that they were conceiving babies to serve as donors. But these parents have shunned publicity, leery of letting the world pry into their ordeals. In the case of the Ayalas, their decision to conceive a child as an organ donor was declared in public for all interested parties to examine.
Ethicists and doctors are asking whether conceiving a child as a source of donated organs violates the principle that individuals should be brought into the world and cherished for their own sake and no other motive. Others argue that the children who are conceived to donate organs are deeply loved and that it is unfair to point fingers at parents who have a child to save another person's life. From the point of view of the child, they say, it is certainly better to have been conceived to donate rather than to have never been conceived at all. It may even be justifiable to abort a fetus of the wrong tissue type, some experts say, but others say they cannot condone this.
At first, said Dr. Steven Forman, the City of Hope transplant specialist who is caring for Anissa, transplant experts were saying, "What's the big deal? This happens all the time." He said that the risk to a bone marrow donor was negligible and that even for a kidney donor the major risk was going through life with only one kidney. But as the case gained attention, Dr. Forman said, he began to ask himself why he found it acceptable to conceive a child to be a donor and why, if it was so acceptable, doctors and parents had kept quiet about it until now.
In conceiving Marissa, the Ayalas were seeking to escape from a desperate predicament. Their daughter Anissa has chronic myelogenous leukemia, a disease that kills 80 to 90 percent of patients within five years of diagnosis. Her only hope is a bone marrow transplant, Dr. Forman said, and even then her survival is far from assured. Twenty to 25 percent of marrow transplant patients die, usually of infections, adverse reactions or a return of the leukemia.
Search for a Donor When Anissa was found to have the disease four years ago, she and her family began searching for someone whose tissue type was compatible with hers and who would be willing to donate marrow. There is discomfort for the donor, who is anesthetized while doctors poke long needles into hip bones and withdraw precious tubes of the dark red marrow.
The patient, meanwhile, has undergone four days of intensive, whole body irradiation followed by high doses of chemotherapy, a process that destroys every cell of his or her own cancerous marrow. As soon as the donor's marrow is drawn, it is dripped into the patient's bloodstream, where it finds its way into the bones and grows there.
But the Ayalas could not find a compatible donor. Neither parent had the right tissue type, nor did their son, Airon, who is 20. A nationwide search for an unrelated donor found none. The Ayalas, who live in Walnut, Calif., announced last February their decision to conceive a baby as the best hope of finding compatible marrow for Anissa. Abe Ayala, the father, had a vasectomy reversed. The mother, Mary Ayala, was 42 when she conceived.
Dr. Rudolph Brutoco of Covina, Calif., the baby's pediatrician, said that Mrs. Ayala had amniocentesis when she was six months' pregnant and had the fetus's tissues typed. The reason, Dr. Brutoco said, was not to have an abortion -- it was too late by then, Dr. Brutoco said -- but to learn if the baby could be a donor. If the fetal tissues matched Anissa's, doctors would save the baby's umbilical cord blood to give along with her marrow when Anissa had her transplant. Marissa was born on April 3, 1990.
Dr. Forman said he and the other doctors on the transplant team took "an educated guess," that the best time to attempt the transplant would be when Marissa was 14 months old, balancing Anissa's limited time when she would be healthy enough to have a marrow transplant with their desire to allow Marissa time to grow and develop. Anissa was admitted to the hospital on May 22 and her marrow has now been destroyed: she cannot make any red or white blood cells on her own and will die without her sister's marrow.
When the donor is a baby, the parents give permission for the transplant. When child donors are old enough to be included in the discussions, the doctors describe the donation process to them and ask them if they want to be donors, Dr. Forman said. Most readily agree, he added.
Survey Uncovers Similar Cases Decisions like the Ayalas' are apparently not as uncommon as might be expected. Last fall Dr. Arthur Caplan and Dr. Warren Kearney of the Center for Bioethics at the University of Minnesota surveyed 15 out of the nation's 27 bone marrow transplant centers, including the 10 largest ones, asking doctors and nurses whether they knew of similar cases and, if so, what had become of them. "We found at least 40 children had been conceived for the purpose of bone marrow donation in the past 5 years," Dr. Caplan said. Most were conceived to help an older brother or sister, some for the aid of parent or cousin. "In none of these cases has there been public acknowledgment," Dr. Caplan said.
Transplant specialists said Dr. Caplan and Dr. Kearney might have uncovered just a fraction of the cases. Parents usually do not discuss their decision to have another baby with their transplant doctors, said Dr. Patrick Beatty, a bone marrow transplant specialist at the University of Utah. "Parents usually figure it out by themselves," he said. "Most of the time the parents don't say, 'Dr. Beatty, should we have another baby to try to have a match?' Instead, the women just show up pregnant and the doctors do not ask why.
In his survey, Dr. Caplan said, he learned of one couple that conceived three children in an unsuccessful attempt to have a donor. Another couple had a child with a rare metabolic disorder that could be cured by a bone marrow transplant. They had another baby to be a donor, but the baby turned out to have the same rare disease. In another family, a woman had been divorced and remarried when a child from her first marriage needed a bone marrow transplant. So she was artificially inseminated with semen from her former husband to conceive a baby to save the child.
'It's Not Rare' Dr. Norman Fost, a pediatrician and ethicist at the University of Wisconsin School of Medicine, said he has been involved with several families who had babies because they needed a donor. "It's not rare," he said. In one case, the family had a child with chronic kidney failure who had had two unsuccessful transplants with cadaver kidneys. They had another child and indicated to Dr. Fost that they were doing so to have a kidney donor. When the child was 14 and agreed to donate a kidney, doctors went ahead with the transplant, which was successful. "The family believed God had given them this gift," Dr. Fost said. "They believed the younger child had been created to save the older one."
In another case, a couple conceived a child hoping for a bone marrow donor. They sought prenatal testing with the intention of aborting the fetus if it was not a match, but their obstetrician refused. Dr. Fost said he did not know if the woman was tested elsewhere. Dr. Mark Evans of Hutzel Hospital in Detroit said he had refused to agree to prenatal tissue tests for a woman intending to become pregnant in a similar case. "I do not believe that the creation of a pregnancy for the sole purpose of creating an organ donor is ethically acceptable," he said. "I personally think it is too Orwellian for society's own good." Dr. Evans said the woman did not become pregnant.
Dr. Caplan said he did not think it was wrong to have a baby because of the need for a marrow donor. "Basically, people have babies for all sorts of screwy reasons," he said. "Most people have a child without thinking about why. At least in this case, they are having a child partly from this notion of altruism."
Dr. Fost agreed. "Of all the reasons people have children, I think this is one of the better ones: to save a life," he said. Dr. Fost said he thought it was acceptable to use prenatal diagnosis to determine if a fetus would be of the right tissue type and to abort fetuses that were not. He said that since women did not have to give any particular reason for having an abortion, there was no justification for denying them abortions if they gave that reason.
But Dr. Robert Levine, an ethicist at Yale University's School of Medicine, said he was troubled by the idea of having babies to be donors and aborting fetuses that were not the right tissue type. "The ideals of our society are that we are to treat each person as an end and never merely as a means," he said. "It seems to me that when a primary motive for conceiving a child is to produce tissue or an organ, we are getting very close to seeing this new being as a means to another end. This is what raises an ethical impropriety."
Dr. Levine added that the question of aborting a fetus of the wrong tissue type raised even murkier issues. "The nature of the debate exposes to me some of the deficiencies in our capacity to have such debates," he said. The problem is that most people have complex, contradictory feelings toward abortion that "make it hard for thoughtful people to say this is right or wrong," Dr. Levine said.
Ethicists have gone through this debate in discussing whether a woman could have an abortion and donate fetal tissue to a patients with Parkinson's disease or diabetes who wanted a fetal tissue transplant. Recalling that debate, Dr. Levine said one ethicist would say, "No, that would be wrong," and then another would reply, "The law of the land says you can have an abortion without giving a reason, so why can't you have an abortion for a good reason?" At that point, Dr. Levine said, "Everyone walks away looking unhappy." Dr. Levine said that he "would like to be counted among those people who say it's way too complex to respond very concisely."
Organ Transplants, Medical Ethics, And Children
DOUG MATACONIS · THURSDAY, JUNE 13, 2013 · 16 COMMENTS
Yesterday at a hospital in Philadelphia, a 10 year old girl named Sarah Murnaghan who suffers from Cystic Fibrosis underwent a lung transplant after a compatible donor was found. According to reports, Sarah appears to be doing well after the surgery, although her condition will be touch-and-go for quite some time both because of her underlying illness and because of the fact that she just received a transplant.
What makes her case unusual, or at least noteworthy. is that it comes after a court battle and the decision of the Secretary of Health and Human Services to suspend for just her case a national rule that prevents children under twelve from being put on the list for adult organ transplants. Since she was under 12, Sarah was on the list for donations of children’s organs however viable donor lungs from this list are rare and may not have come in time for her. So, her parents, supported by her doctors, filed a lawsuit to try to void the rule that kept her off the adult list.
While there is apparently still some conflict among doctors over whether its wise to use adult organs on children under 12, he ended up ruling in Sarah’s favor and the HHS issued an exception to the rule that allowed her to be placed on the list. Sarah’s survival is still an open question, both because of her Cystic Fibrosis and because there’s still a chance that her body will reject the organ. However, it is eminently clear that this transplant has given her time that she otherwise would not have had.
Organ transplants are an area fraught with ethical issues. No matter what happens, when a compatible organ becomes available, that organ will generally only go to one person while another person will be denied their transplant. Given that many people on the list are living on borrowed time, an acceptance or denial can mean the difference between life and death.
To deal with this problem and the fact that there are simply more people who need organs than there are available transplant organs, a system has evolved that places people on a list and ranks them according to the severity of their condition and other factors. Ideally, where someone ranks on a respective list is and should be made based on objective factors, so it’s possible for someone in their 60s to place higher on the list than someone in their 30s despite the fact that the 30 year-old is likely to live longer if the transplant is successful. Being a system designed by humans, it often doesn’t work perfectly, but it does seem like a system designed to bring some objectivity and fairness to an issue fraught with emotion.
Bethany Mandel describes the process in more detail:
Organ transplant list rules are complicated, and vary by the type of organ. Generally, every organ transplant system in the country operates as independently as possible, with a panel of doctors assigning each patient a score based on a number of factors, which then determines their ranking on the list. Because the list of those in need of transplants is far longer than the list of potential organs, impartial panels of doctors blindly determine a patient’s position on the list, which can change depending on if their condition changes.
Because of the biological differences between pediatric and adult patients, there are different criteria for each group for lung donation nationwide. There are fewer pediatric organs available. However, every pediatric lung is first offered to a pediatric patient before it is offered to an adult. Adult patients are given a “lung allocation score,” which was developed by the United Network for Organ Sharing (UNOS), whose board decided the criteria used to determine a patient’s position on the lung transplant list. There have been far fewer pediatric lung transplants than adults, therefore the UNOS has assigned different criteria for patients under the age of 12 waiting for a lung transplant as they await further data to accurately determine how to assign a more precise score to children.
Computers randomly sort patients, and while pediatric patients’ rank may be disadvantaged on the list according to their score, which is less precise than that of adults, the UNOS favors pediatric patients in other ways in addition to offering pediatric patients first priority for pediatric lungs, such as assigning a priority blind to a patient’s prognosis, a criteria which is factored into the scores of adult patients. Pediatric patients under the age of 12 also have a much wider geographic area from which they can be offered lungs, as compared to adolescent and adult patients, another advantage which is only offered to pediatric patients who may otherwise be disadvantaged.
Now, though, there’s some worry that the way Sarah Murnaghan’s case was handled prior to her transplant , everyone hopes for the best for Sarah and her family. The match comes after a media campaign, a lawsuit and a federal court order, not to mention pressure from lawmakers on HHS Secretary Kathleen Sebelius to personally intervene on behalf of a single child. It has experts from the transplant community worried about a precedent with the potential to open up the system to tampering from the outside. And that could begin chipping away at the careful framework set up to fairly distribute donated organs, the most precious — and scarce — resources in the health care system.
“If the distribution of organs becomes subject to the success of individual publicity campaigns, with organs going to those who hire the best PR firms and lawyers, who on the waiting list would remain confident that their priority would be decided on the merits?” Daniel Wikler, a medical ethics expert at Harvard, said in an email. “And who would agree to donate organs to a system supposedly based on rational, humane, and fair selection criteria but that would actually be determined by the assets of the highest bidder?”He noted that if one person gets moved up on the list and others drop down, it must be justified.
In a highly unusual move that sent a shockwave through the transplant community, a federal judge last week ordered Sarah Murnaghan and Javier Acosta, 11, onto the adult waiting list, suspending a rule that effectively bans children under 12 from receiving adult lungs. Instead, young children are first in line to receive organs from donors around their age, which is often preferable because they are a better fit for their chest cavities. But pediatric donors are even rarer than adults.
Few people have risen to defend an absolute rule that bars children under 12 from the adult waiting list. In fact, many experts say that setting up a good appeals process to review especially borderline cases could be an improvement, because the age 12 cutoff is arbitrary in a sense. There’s not much difference between an 11 ½-year-old and a 12-year-old for instance, and in general some children grow more quickly or slowly than others and could be considered in the older or younger category, from a clinical perspective. “I’m not saying I disagree with having an appeals process, I’ve thought the rule could be reviewed before,” said Dr. David Weill, director of the lung transplant program at Stanford Hospital.
The main concern is that the process has been influenced by the media spotlight on individual cases, or an order from a court. That’s the line that experts worry has been crossed. “They made a major policy decision that really changed the entire allocation scheme,” Weill said, adding that that should not be done on an ad hoc basis. Although the underlying policy hasn’t been officially changed, the appeals process allows children to be prioritized by the same standards as adults, which they were not before. None of the three committees that reviewed the “under 12” policy at the transplant network concluded that there was scientific evidence to justify an emergency change.
Sarah’s case has already led at least one other family to also head to the Courts to seek to get their child put on the adult list like Sarah was and, given the attention that her case has got, we can probably expect others to do this in the future. I’m not at all certain that this is a good thing, and I fear that getting the courts involved in the organ donation process will make things worse for people waiting for organs, not better.
With regard to the specifics of Sarah’s case, there does appear to be a growing consensus that the rule that bars all children under 12 from the adult transplant list is far too rigid and needs to be re-examined. This needs to be done, however, in a manner that addresses the science of the issue rather than something that plays itself out in the legal system and depends heavily on how skilled a patients’ lawyer is and how sympathetic their case is to whichever Judge it gets assigned to.
As Mandel notes later in her post, getting the legal system involved poses serious dangers to the entire organ transplant system: While the Murnaghan case is tragic, it’s best to keep in mind that wariness of judicial activism is strong in the conservative movement for a reason. By circumventing the rules that thousands of other families abide by, this federal judge has introduced the very real possibility that the carefully crafted rules regarding organ allocation in this country will now be decided not by trained medical professionals operating under a strict series of guidelines, but instead by judges who have no involvement in the complicated medical and ethical field of organ donation. If federal courts are soon deluged by desperate families seeking exceptions to organ transplant rules, this ruling will, and should be, viewed as what it is: a well-intentioned but misguided opening of Pandora’s Box.
I am certainly not faulting Sarah’s parents for the course of action that they took. Their daughter likely would have died in the very near future if she hadn’t gotten a transplant, and seeking to have the under-12 rule repealed via the Court system was the only real option that they had available to them. Any parent in a similar situation would have done the same thing, and it’s understandable to see why. However, courts can only deal with cases like this on an individual basis. They generally won’t consider the consequences in the future of upsetting the medical ethics apple cart by ordering that one patient be advanced up the list to those who are already on the list or the ones who don’t get as a high a position on the list as they might have otherwise. The result may be good for one person, but it’s going to work to the disadvantage of others, and it’s likely to make it that much harder to run an organ transplant system that presents painfully difficult ethical issues on a daily basis.
I hope that Sarah makes it through this, but I also hope that her case isn’t an indication of how these issues will deal with in the future.
What about me? Growing up with a seriously sick sibling
By Lois M. Collins, Deseret News
Published: Saturday, Feb. 16 2013 6:00 a.m. MST
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Sydney Sherwood, then 6, cuddles baby brother Billy, diagnosed with neuroblastoma at 1
MARLBORO, N.J. — From Sydney Sherwood's perspective, the tumor that threatened her baby brother's life was also a parent snatcher. When she was 6, her mom and dad took her baby brother, Billy, to the doctor. They didn't come back for 32 days — the first time.
Five years later, Billy is mostly home and doing better. Right now, there's no sign of cancer. But nearly 11 years old, Sydney is still anxious and paces the house at least once a night, checking to see that everyone's where they belong. She sometimes settles at the foot of Dena and Billy Sherwood Sr.'s bed, so they'll have to wake her if they must disappear in the night for yet another in what has been a years-long series of trips to the hospital.
Serious illness seldom settles only on one child. It engulfs and changes brothers and sisters, too. Experts say if the "other" children are not handled with care, results can be as devastating as the disease that started it all.
There's no way to count all the children with life-altering diseases and injuries, much less how many siblings they have. There are ways, though, to get a sense of the magnitude. Consider, for instance, that more than 175 hospitals nationwide only treat children, and that children also are seen daily at hundreds of other hospitals. Or you can translate disease-specific numbers into something familiar that offers clues. Kids and classrooms go together; think of the nation's average, 25-child classroom. The 13,400 new cases of cancer diagnosed in kids this year would fill 536 classrooms that size. You could fill 54 a year with children who won't survive cancer, often after years of illness; more than 200 classrooms with kids born with serious heart defects; and 20,000 classrooms with babies born prematurely. Those are just a few of the health categories that send families scrambling. Now try to imagine how many brothers and sisters all those children have.
Jumbled households
When Sara Flash was diagnosed with non-Hodgkin lymphoma days before her 12th birthday, the lives of her two little brothers changed dramatically, too. Their grandparents moved in and mom and Sara moved out for weeks at a time. Dad needed to work and spend time at the hospital, too, so he was gone more.
The same thing happened to Jason and Wendy Magera's Helena, Mont., household when their Sarah, now 13, was diagnosed with leukemia a year ago. Mom and Sarah headed to Salt Lake City, leaving Pyper, now 3, and Heather, 9, home with dad and grandparents who moved in to help. One of the "grands" often stays in Salt Lake with Wendy and Sarah, who has been at Primary Children's Medical Center off and on; they once rented a Utah apartment for 10 months. Sarah needs a bone marrow transplant.
Allison Flash went with Sara to the children's hospital; the grandparents, retired but living elsewhere, packed up their lives and pitched in, moving in with Ed Flash and Sara's brothers: Adam in fourth grade, Daniel in kindergarten.
Shadows
Children naturally see things in terms of how it affects them, says Susan Bartell, New York psychologist and author of "The Top 50 Questions Kids Ask." When a sibling ails, they worry about what will happen and if it could happen to them, too. "Kids are very focused on fairness," says Rachelle Krolle, child life specialist at Primary Children's Medical Center. "An adult sees a child with extra medical needs; the other children may see a child who gets more time with parents. Probably the biggest thing we see is jealousy, feeling left out."
Sick children often receive gifts to cheer them up; siblings can feel left out there, too. Their lives are heavily impacted, though they may not recognize the physical suffering of the child who's sick. Some siblings miss activities because stressed parents can't get them there. Older kids may be asked to tend younger kids more. Or children might not be able to have friends over or go play for fear of catching something that could harm the sick child.
That's periodically the story for the children of David and Lu Simonsen of Olympia, Wash. Their youngest, Sophia, 2, has leukemia. The other five kids, ages 5 to 14, sometimes must skip activities because chemotherapy makes Sophia vulnerable. David Simonsen reminds them it's only for a few months, but says their reactions vary. One daughter wants to hang out with friends but would rather stay home than wear a face mask; his son dons one without fuss. Plus, everywhere healthy siblings go or each time they answer the telephone, it's "'How's your brother doing?'" says Krolle. "They wish someone'd ask about them."
David Simonsen, a therapist, was struck recently by a conversation with children in the family of a gravely ill teen. Two little sisters, 8 and 10, sometimes think their older sister should die, though it's not clear they understand what that means. They want their parents back. Other children become protective — even over-protective — of a sick sibling. Heather Magera is like that. "She's had a harder time because she is the sweetest, most giving child," Wendy Magera says. At 9, she wants to take care of everyone and anger no one. "The 3-year-old demands attention there. Sarah gets attention here. It's hard for the middle kid, trying to be strong for everybody." Jason Magera says Heather's grandparents do special things with her, and when they visit Salt Lake, child life specialists talk to her about Sarah and answer her questions.
Other resources for the siblings may be harder to come by, depending on where one lives. Gilda's Club, for example, has chapters scattered around the country that offer support to family members of someone who has cancer. Salt Lake's Cancer Wellness House is one of many in the country offering support or discussion groups for "caregivers/family/friends." Some are more targeted to youngsters than others. But there are wide geographic gaps where there's nothing nearby for the brothers and sisters when a child is ill, or families may be hard-pressed to get the siblings into a support program given the demands made by getting the sick child to treatment.
Other groups offer activities for both the sick child and siblings in different health categories. "Camps" for kids, based on diagnosis, and their siblings have proliferated. You can find them for children with kidney or bone disease, burns and heart problems, among others. Flying Horse Farms, for example, in Columbus, Ohio, offered a sibling camp last summer related to arthritis, asthma, sickle cell anemia, hemophilia, cancer, gastrointestinal disorders, and kidney and heart diseases. Those tend to be a one-shot boost lasting a few days, and they also usually hinge on the sibling who has the illness being well enough to attend. So while they're helpful and fun, they don't help the siblings — who some refer to as "shadow children" — get through day to day.
Honest discussion
Kristine Kevorkian, a trained end-of-life expert known as a thanatologist, in Seattle, says families need to discuss what is happening with the siblings. With a child, it should be age-appropriate and as specific as possible.
"It's not, 'Grandma went to sleep and she died.' That makes sleep scary," she said. "Explain in detail. Ask children and adults to repeat it to make sure it was understood." If you don't tell children what's happening, they will fill in blanks, and they usually get it wrong, she says. Krolle says to be hopeful and honest, even when the news is bad. "We don't know what is going to happen, but the doctors are doing everything they can and will continue to."
Children need some control. Doctors tend to "speak around" patients who are young or old. Siblings get overlooked. It's important that youngsters get a chance to speak up, to ask, to relate. Otherwise, it can ramp up the resentment or fear or loneliness a child feels. No matter how serious the illness is, Bartell says, do not let it be the only thing happening in the siblings' lives. Parents need to ask what's going on with them and talk about other things.
A child who feels left behind may become angry, Bartell says, and instead of viewing his brother as sick might see him as privileged. It kicks off "a crazy cycle of the parent mad at the kid for being mad at the other kid who is sick." Parents who always excuse an ill child from doing tasks like clearing the table fuel resentment. It's not good for the sick child, either. "It's better, sick or not, if you make them do what they should if they can," Bartell said. Being angry isn't the same as being mean or insensitive. An angry child struggles and someone needs to notice, says Bartell, who tells parents not to make well children give up everything because a sick child had to. "Acknowledge that it's hard for them and give them opportunities to do things a bit differently in other places."
Juggling Some families go to great lengths to see that the children who aren't sick get time with mom and dad. Allison Flash would stay with Sara, then race on Tuesdays to do her volunteer shift in her sons' classes, same as always. It's a lot harder if you don't have family and friends nearby. Technologies have opened doors that didn't exist not long ago. Wendy Magera Skypes with her husband and children in Montana every other night from Sarah's hospital room.
Couples often split time between their children and, though they seldom see each other, they meet the need to be with the sick child while keeping some normalcy at home. That's what Liz and Jay Scott did after their baby daughter, Alex, was diagnosed with neuroblastoma. The Wynnewood, Penn., couple spent seven years juggling hospital and home, someone always with their young boys. Often, they ate as family in the hospital cafeteria. Alex died when she was 8. She is well-remembered as the tiny founder of Alex's Lemonade Stand. She raised money for childhood cancer research, and the tradition continues through a foundation by that name.
Krolle knows families that "assign people — an uncle, aunt, friend, etc. — specifically to pay attention to the siblings. "No two families cope the same. When Anne Hamming's son Lee was fighting an autoimmune disease and needed a bone marrow transplant at age 4, Hamming, who was divorced, sent daughter Katie, 7, to live with grandparents an hour from their Grand Rapids, Mich., home and 400 miles from the hospital. It was the only solution she had. They'd been told Lee would be in or near the hospital for at least six months. The separation lasted 15 months, though they visited. They attended her 8th birthday party by Skype.
Extended family doted on Katie to the point Hamming worried she wouldn't want to come home: "She actually got a little spoiled." Hamming, who wrote "Saving Lee, Finding Grace," worried it would be hard to bring the two kids back together. It was. Post-illness, they were three greatly changed people who needed new ways to do things. Lee, 9, is still catching up with peers. Katie, 11, is adapting to a brother who is more rough-and-tumble than she is used to.
Offering help Outsiders and sometimes even those close to a family struggle with how best to provide the help they yearn to offer. The families themselves are equally befuddled on how to ask for what they need. Kevorkian suggests parents ask someone to be their voice and round up the troops as needed. If you want to help, offer to do specific tasks. Teachers and others who interact with siblings can be very useful, providing ears and eyes in school to be sure that a sibling isn't lost when a child ails. Grief counseling can help, Kevorkian said. Dreams and goals might have to be revised.
One of the best helps is not overstepping, families who've gone through crisis say. Don't, for example, assume that parents have had the same conversations you'd have with your kids. The Flash family has an online page for updates and support. One friend posted, "I know you'll survive this." That was how Sara learned she might die. The family had been focusing on treatment. "It is scary enough to go through cancer treatment without having to fear dying at age 12. I never, ever lie to my children," said Allison Flash. "But I believe there's a line between a responsible and irresponsible amount of information."
If communication is open, patients and siblings get support. If they can talk about love and fears and what they're going through, Kevorkian says families do OK. "This is the launching pad for how the healthy children end up coping with loss, probably for the rest of their lives."
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Liver Transplant Can Give Some Alcoholics a Second Chance, Says French Study
• By SUSAN DONALDSON JAMES, Nov. 10, 2011
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Langone Medical Center transplant team
A 31-year-old man with a wife and three-month-old baby lay in New York University Langone Medical Center this week with acute alcoholic hepatitis, a liver-ravaging disease that will likely kill him if he doesn't stop drinking.
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• A 31-year-old man with a wife and three-month-old baby lay in New York University Langone Medical Center this week with acute alcoholic hepatitis, a liver-ravaging disease that will likely kill him if he doesn't stop drinking."No one told him that alcohol was bad and he had been doing it since college," said Dr. Lewis Teperman, director of transplantation at NYU.
"No one told him that alcohol was bad, and he had been doing it since college," said Dr. Lewis Teperman, director of transplantation at NYU. "He is a big finance guy and wound up in the hospital for a month, super sick, with his liver quitting on him," he said. "He had never stopped the booze before."
More than 16,000 Americans are waiting for a liver transplant, according to federal data from the Organ Procurement and Transport Network. Only 6,000 organs are available a year andnearly 2,000 people will die waiting for one to become available.
Should Teperman's patient, who is committed to abstinence from alcohol and has the family support to keep his promise, be allowed an early transplant, before his liver is fatally scarred by cirrhosis? Even as thousands of others who have not abused their bodies with alcohol or drugs await a new liver.
"This is a truly controversial subject," said Teperman. "But I believe people deserve a second chance. You just have to figure out the right patient population."
Now, a new study by French researchers released Wednesday concludes that early liver transplantation can improve survival in patients with a first episode of severe alcoholic hepatitis who aren't responding to medical therapy.
A six-month abstinence from alcohol is usually required before patients with acute alcoholic hepatitis are considered for liver transplantation, but some doctors want to rethink the rule. Only30 percent of those who do not respond to treatment live beyond six months and most die within two months, according to the study published Nov. 9 in the New England Journal of Medicine. With supportive families, no other severe medical conditions and a commitment to future abstinence, patients can do well, the study revealed.
But study authors say that although early liver transplantation is "attractive," many doctors are reluctant to treat patients with alcoholism because they are "responsible for their illness" and are likely to resume drinking.
Teperman said his patient, who is now responding to steroid medications, had never had proper counseling or treatment, but he would have been a "perfect" candidate for a transplant. "He's holding down a job and no one ever addressed it appropriately with him," said Teperman. "People who are consistently drinking and having repeat DWI after DWI would not be."
"It should be done in certain rare circumstances," he said. "We need a good system to predict which of these people are going to get better…We can't just open the door to this for everyone – there aren't enough organs to go around."
The liver is one of the largest and most complex organs, protecting the body from disease and breaking down and removing harmful toxins. It is especially vulnerable to alcohol. Alcoholic hepatitis, or inflammation of the liver, is a potentially fatal condition that can be a "red flag" that cirrhosis of the liver may soon follow, according to the National Institute on Alcohol Abuse and Alcoholism (NIAAA). Up to 70 percent of all alcoholic hepatitis patients will develop cirrhosis, a scarring of the liver that is a major cause of death in the United States, according to NIAAA.
But those who stop drinking can have a complete recovery from alcoholic hepatitis and a liver transplant can save their lives.
Acute Alcoholic Hepatitis Patients Improved After Transplant
The study involved patients selected from seven centers for early liver transplantation. All had no prior episodes of alcoholic hepatitis and were assessed at having a high risk of death. Twenty-six of patients at risk of death were placed on a list for liver transplant. The cumulative six-month survival rate was higher in those who had undergone transplant surgery. Follow-up showed this was maintained for two years. Three patients resume drinking alcohol: one at 720 days and one at 740 days and one at 1,140 days after transplantation. Two patients died from infection.
About 50 percent of all liver transplants are related to alcohol-induced disease, according to Dr. David Cronin, director of liver transplants at Froedtert and the Medical College of Wisconsin. "The dilemma is that livers that are available for transplants in a limited supply," said Cronin. "Many people on the list have -- in quotes -- paid their dues. They have done what they were supposed to do to get evaluated. They have changed their social behavior and are waiting."
The question of "worthy" must be considered with the one of "utility," he said. Patients should have an 85 percent chance of expected success. "This is not a salvage operation," said Cronin. "The sicker you are, the higher rate of dying."
Alcoholics with chronic liver disease may not be good transplant patients. "Substance abuse is associated with self-destructive behavior and noncompliance," he said. "If you give them a liver transplant, they won't maintain employment and show up for visits and take their medications and the graft ends up failing." But in patients with acute alcoholic hepatitis, which can also be caused by a one-time event like a virus or eating mushrooms or other drugs, the success rate may be higher.
Cronin, as the study concludes, said it takes a "highly selected" type of patient, with strong family support to keep them off alcohol. "We will take a chance with this group," he said. "If they don't get a transplant, a certain subset in the group will die… We are in the life-preserving game. We should always -- physicians and society -- strive to preserve life... That is our duty."
Cronin said the liver transplant can be a "life-changing event" for those who realize "they made a mistake." Such was the case with another one of Teperman's liver transplant patients in 1997 at New York University -- a woman who in her 20s who had acute alcoholic hepatitis. "She was young and there were some emotional issues that had taken place," he said. "But she had the belief and support of her family and a rehab doctor and a psychiatrist who said this had caused a wonderful woman just to over the deep end. They were all behind her." Now, more than decade later, she is healthy and thriving – without alcohol.
The Telegraph News
China admits organs removed from prisoners for transplants
China has admitted that two-thirds of all organs used in transplants in the country are taken from executed prisoners.
By Peter Foster in Beijing
3:30PM BST 26 Aug 2009
Facing a growing demand for transplants, the Beijing government finally conceded that abuses had taken place after years of allegations that prisoners and even young conscripts in its army were targeted for their organs. It announced a national plan to curb a rampant black market organ trade where a single kidney can sell for as much as £50,000. Promising a major initiative to clean up China's murky organ donation business, the country's vice-minister for health, Huang Jiefu, said Death Row inmates were "definitely not a proper source for organ transplants".
Under Chinese law organs can only be taken from condemned prisoners if they give written consent, however the opaque nature of Chinese justice has drained confidence from the system which doctors admit is open to widespread abuse. The Red Cross Society of China has now been charged with implementing a new scheme to encourage the public to offer their organs for donation, creating a database of potential donors and offering financial support to needy families of those who sign up.
"Transplants should not be a privilege for the rich," added Mr Huang, "This system is in the public interest and will benefit patients regardless of social status and wealth in terms of fairness in organ allocation and better procurement."
The dearth of organs for transplant in China is blamed on cultural taboos that make people reluctant to be buried without their bodies intact. According to official statistics more than a million people in China need a transplant every year, but less than 10,000 receive organs. The gap between supply and demand has lead to a thriving black market, with 'organ dealers' advertising openly on the internet, offering to match would-be clients with donors willing to sell their organs for profit.
In 2007 China banned donations from people were not relatives or 'emotionally connected' to the recipients, however the rules are routinely circumvented by dealers forging paper work, usually with the connivance of officials and doctors who also profit from the trade.
Although precise numbers are kept secret, China executes more prisoners than all other countries in the world put together, however a stricter appeals system introduced in 2007 has cut the number of available convict-donors, putting further pressure on the system. "The huge shortage of organ donors and organs has created a significant black market for organs," said Chen Zhonghua, the Chinese Medical Association's deputy director for transplanting. "This in turn has ruined public faith and willingness to donate organs."
A Beijing doctor can expect to make 30,000 yuan (£2,700) for carrying out an "illegal" transplant, according to one dealer, Li Zhe, who was interviewed by state-run Global Times newspaper.
"If there are available matching organs for patients, trading can start immediately, I'll take care of all the procedures," he told the paper. "A single case costs as much as 200,000 yuan (£18,000) for a patient who needs a kidney transplant." Mr Li, whose website was still available on Wednesday, declined to speak further when contacted by The Telegraph by telephone.
However other sites were still openly offering organs for sale. On one, [daifu means doctor in Chinese], a dealer claiming to be the head of the "Asian Association for Friends in Need of Kidneys" said he had found transplant kidneys for over 200 patients.
One anonymous responder, a 35-year-old man, left a message offering to sell his kidney for 200,000 to 300,000 yuan (£18,000-27,000), promising immediate availability if the money was transferred to his account one hour before surgery. "I don't need your sympathy. I am willing to do that since it save your life, also mine spontaneously," he added.
The scale and openness of the trade, which has seen live donations rise from 15 per cent of transplants in 2006 to 40 per cent last year, makes it clear that the Chinese government will have to fight hard to stamp out a lucrative trade that enriches corrupt doctors, dealers and officials.
China's ministry of health, which licenses 164 medical institutions to carry out organ transplants nationwide, said it had already revoked licenses from 16 hospitals that had failed to comply with regulations on organ transplants. In February the Ministry of Health also announced is it was investigating reports in Japan's Kyoto News that 17 Japanese had travelled to Guangzhou in southern China for illegal liver and kidney transplants costing more than £50,000 each.
In a statement the ministry, which banned foreigners from coming to China for 'transplant tourism' in 2007, said it would punish severely any doctors or hospitals found to have broken the rules.
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