heart of europe

Transcrição

heart of europe

workshop: AIDS & Human Rights
coach:
Lisa Eckel
participants: Maria Lena Campei, ITA
Min Fang, AUT
Magdalena Graf, ITA
Veronika Graf, ITA
Alexandra Neagu, ROM
Andrei Serban, ROM
Ingrid Szary, AUT
Ambros J. Tazreiter, AUT
Iris Wieser, AUT
heart of europe - portfolio
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AIDS & human rights – portfolio
CONTENTS
topic
page
I. THE DILEMMA STORIES:
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1. Dilemma story to the topic Aids and Human rights
3
4
II. AIDS AND HIV – INTERNET RESEARCH:
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Diskussion um neues Gesetz zu AIDS
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The Different Stages of HIV Infection
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III. NEW DILEMMASTORIES OF THE PUPILS:
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The right to live
9
The unwanted baby
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Two children – one life
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IV. TWINS PROBLEM – INTERNET RESEARCH:
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TWINS PROBLEM
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Siameze romance separate in America
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Conjoined twins should be separated
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Drei Tage nach der Trennung…
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Tabea ist gestorben, Lea lebt
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Siamesische Zwillinge: Tag Zwei der Operation
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Conjoined twins
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Health Effechts fo the separation of conjoined twins
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V. DIARY
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1. AIDS and human rights
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2. The twins problem:
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heart of Europe – youth in dialogue
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I. The dilemma stories:
(written by Mag. Kurt Eckel)
The 19-year-old girl Kathrin confines in her classmate Sabrina, of same age, that she is HIV
positive. Everything happened when she was 16. Her then-boyfriend infected her when they
had sex for the first time.
They didn’t have safer sex and the topic aids didn’t exist for the loving couple. The
boyfriend of Kathrin’s was considerably older than her and she never found out why he had
this virus.
Kathrin and Sabrina already got better friends in the last class of their school and they
planned to go together to the capital city to study there. They wanted to get a flat together
and do their studies together.
Sabrina is shocked because of her girlfriend`s infection of her girlfriend. Now she thinks
about the new situation. Should she dissociate from Karthrin, resign from their shared plans
of a study, and find another student for their flat.
The same time Sabrina remembers what she learned years ago from the Youth Red Cross
AIDS-Peers in school. She also remembered what she heard about the topic discrimination
and social exclusion of HIV positive people.
As Sabrina is going to study law, she was always interested in human rights. So she realises
that HIV/Aids and human rights are linked in many ways.
The young lady has a big dilemma:
• Should she dissociate from her friend and resign the friendship?
• Should she stand by her friend any longer?
• Should she put fear and her personal feelings against the rationality? Should she
ignore the human rights as others do?
• Why?
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(written by Mag. Kurt Eckel)
Michaela N. is 35 year old and HIV positive. She was infected by her then-boyfriend when
she had sex for the first time.
Her boyfriend was haemophiliac and was fixed at a therapy with blood products with the HIvirus. Over the intervening years he died because of AIDS.
At the moment Michaela is applying for a job in a big company. Her chances to get this job
are good, but she didn’t say anything about her disease.
At her last job interview there was an incident and Michaela collapsed during the
conversation with the personnel manager Franz P.. After this she told him that she is HIV
positive.
On the one hand she was lucky, because the personnel manager Franz P. is a very social
person and in his free time he lobbies the adherence of the human rights. On the other
hand he is very correct with his employer and does not want to take any risks because of an
employment of Michaela N, a HIV positive person.
Franz P. has a big dilemma:
•
Because of his enquiries he knows how often the fundamental rights of man who live
with HIV/AIDS or people who are supposed to be HIV positive get hurt. He also
knows that there is a right of non discrimination, individual prevention, equality of
law, protection of private life, freedom of movement, right to work and others.
•
But is he allowed to employ Michaela N. in his company? Isn’t it a too big risk to give
her this job?
•
What should he do, and why?
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II. AIDS and HIV – internet research:
http://www.astm.lu/article.php3?id_article=387
Date: 15.06.2006
EL SALVADOR
Diskussion um neues Gesetz zu AIDS
Keine Arbeit ohne Test
Von Edgardo Ayala.
(San Salvador, 5.März 2002, na-poonal).- Odir Miranda, ist 33 Jahre alt und hat AIDS. Die
Krankheit hätte ihn fast das Leben gekostet. Umso froher war der Aktivist, dass der
salvadorianische Kongress endlich ein Gesetz zur Prävention und Kontrolle der Krankheit
verabschiedet hat. In seiner Funktion als Präsident der Organisation Atlacatl, ein
Zusammenschluss von HIV-Positiven und AIDS-Kranken, hatte Miranda sich für ein solches
Gesetz eingesetzt.
Die Freude verging ihm jedoch, als er feststellen musste, dass das neue "Gesetz zur
Vorbeugung und Kontrolle der Infektion durch HIV" mit Widersprüchen gespickt war und
eindeutig diskriminierende Züge gegenüber den vom Virus Betroffenen zeigte. Seit seiner
Verabschiedung am 24. Oktober 2001 haben Atlacatl sowie Frauen- und
Schwulenorganisationen das Gesetz in Frage gestellt.
Vor allem der Artikel 16D ist umstritten. Dieser gestattet den Unternehmen, von ihren
Angestellten einen AIDS-Test zu verlangen. Als gesetzliches Schlupfloch dient dafür das
Arbeitsgesetz, welches die ArbeitnehmerInnen dazu verpflichtet, sich einer gesundheitlichen
Untersuchung zu unterziehen falls ihr Arbeitgeber dies verlangt. Da hilft es auch nicht, dass
andere Absätze des Artikels 16 die Vertraulichkeit im Fall einer HIV-Infektion fordern und
eine Entlassung auf Grund der Krankheit verbieten.
Die Organisationen weisen darauf hin, dass es fatale Folgen hat, wenn diese
Untersuchungen in Zukunft AIDS-Tests einschließen. Im Falle eines positiven
Testergebnisses, würden die Betroffenen mit Sicherheit sofort entlassen werden. Dies
widerspricht nicht nur internationalen Abmachungen sondern auch der salvadorianischen
Verfassung, die ihren BürgerInnen das Recht auf Arbeit, auf Menschenwürde und auf
Vertraulichkeit zusichert. Natürlich, so Miranda, würden die Unternehmen nicht die Infektion
selbst als Motiv für die Entlassung angeben, sondern irgendeinen einen anderen Grund an
den Haaren herbei ziehen ; rausgeschmissen würden die Leute dann aber mit größter
Wahrscheinlichkeit trotzdem.
Nach Daten einer Studie über AIDS in El Salvador, die 1999 von der UNO- Organisation
ONUSIDA erarbeitet wurde, liegt die Zahl der HIV-Infizierten in dem mittelamerikanischen
Land bei über 20,000. Davon sind 74.9% Männer und 25.1% Frauen.
Miranda versichert, dass die Forderung nach HIV-Tests erst in letzter Minute dem Gesetz
zugefügt wurde. Verantwortlich macht er dafür die Abgeordneten der Regierungspartei
ARENA, die seiner Meinung nach von den Unternehmern des Landes unter Druck gesetzt
worden waren. Damit hätten sie sich für einige Begünstigungen seitens der Unternehmen
revanchiert. Die Unternehmer wiederum wollen ihre Firmen von dem "Geschmeiss"
"reinigen". Die feindselige Einstellung gegen HIV-Positive zeigt sich auch in den
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Kommentaren der Medien. Diese fordern immer häufiger, dass der Staat sein Geld nicht für
Leute aus dem Fenster werfen soll, die sich durch ihren "verdorbenen Lebenswandel" selbst
in diese Situation gebracht haben.
Norman Quijano ist Abgeordneter der ARENA und hat an dem Gesetz mitgearbeitet. Er
verteidigt den Absatz D mit dem Argument, dass man nicht sechs Millionen Salvadorenos
gefährden dürfe, um 15 000 HIV-Infizierte zu schützen. Quijano, der selbst Arzt ist, glaubt,
dass die Tests bei bestimmten Berufsgruppen, wie z.B. Chirurgen, obligatorisch sein sollten,
während ihre Anwendung in anderen Sparten, wie z.B. bei Bankangestellten sinnlos sei.
Über Sinn und Zweck der Untersuchungen sollen jedoch die Unternehmer selbst entscheiden
dürfen. So öffnet das Gesetz den Unternehmern Tür und Tor, von allen ihren Angestellten
einen AIDS-Test zu verlangen.
Die Menschenrechtsbeauftragte Beatrice de Carrillo denkt, dass die meisten Abgeordneten
dem Thema AIDS völlig gleichgültig gegenüber stehen und dass der Grund für die Mängel
des neuen Gesetzes in eben dieser Gleichgültigkeit zu suchen sei. Dabei stellt de Carillo
nicht nur den umstrittenen Artikel 16D in Frage, sondern vor allen Dingen die Art und
Weise, in der das Gesetz formuliert und verabschiedet wurde. Sie kritisiert unter anderem,
dass es nie eine öffentliche Debatte um das Gesetz gegeben habe und somit den
verschiedenen Bevölkerungsgruppen keine Gelegenheit gegeben worden sei, Vorschläge zu
erarbeiten und Forderungen zu stellen
Odir Miranda setzt nun seine Hoffnungen in den obersten Gerichtshof, der sich mit einer
Verfassungsklage bezüglich des umstrittenen Gesetzes beschäftigt. Die am 1. Dezember
eingereichte Klage bezichtigt den Absatz D der Verfassungswidrigkeit, da er gegen das
Recht auf Arbeit, auf die Menschenwürde, den Schutz der Persönlichkeit und des
öffentlichen Ansehens verstößt.
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http://www.avert.org/hivstages.htm
Date: 15.06.2006
The Different Stages of HIV Infection
HIV infects cells in the immune system and the central nervous system. The main type of
cell that HIV infects is the T helper lymphocyte. These cells play a crucial role in the immune
system, by coordinating the actions of other immune system cells. A large reduction in the
number of T helper cells seriously weakens the immune system.
HIV infects the T helper cell because it has the protein CD4 on its surface, which HIV uses
to attach itself to the cell before gaining entry. This is why the T helper cell is sometimes
referred to as a CD4+ lymphocyte. Once it has found its way into a cell, HIV produces new
copies of itself, which can then go on to infect other cells.
Over time, HIV infection leads to a severe reduction in the number of T helper cells
available to help fight disease. The process usually takes several years.
HIV infection can generally be broken down into four distinct stages: primary infection,
clinically asymptomatic stage, symptomatic HIV infection, and progression from HIV to
AIDS.
STAGE 1 : Primary HIV Infection
This stage of infection lasts for a few weeks and is often accompanied by a short flu-like
illness. In up to about 20% of people the symptoms are serious enough to consult a doctor,
but the diagnosis of HIV infection is frequently missed.
During this stage there is a large amount of HIV in the peripheral blood and the immune
system begins to respond to the virus by producing HIV antibodies and cytotoxic
lymphocytes. This process is known as seroconversion. If an HIV antibody test is done
before seroconversion is complete then it may not be positive.
STAGE 2 : Clinically Asymptomatic Stage
This stage lasts for an average of ten years and, as its name suggests, is free from major
symptoms, although there may be swollen glands. The level of HIV in the peripheral blood
drops to very low levels but people remain infectious and HIV antibodies are detectable in
the blood, so antibody tests will show a positive result.
Research has shown that HIV is not dormant during this stage, but is very active in the
lymph nodes. A test is available to measure the small amount of HIV that escapes the
lymph nodes. This test which measures HIV RNA (HIV genetic material) is referred to as the
viral load test, and it has an important role in the treatment of HIV infection.
STAGE 3 : Symptomatic HIV Infection
Over time the immune system becomes severely damaged by HIV. This is thought to
happen for three main reasons:
• The lymph nodes and tissues become damaged or 'burnt out' because of the years of
activity;
• HIV mutates and becomes more pathogenic, in other words stronger and more
varied, leading to more T helper cell destruction;
• The body fails to keep up with replacing the T helper cells that are lost.
As the immune system fails, so symptoms develop. Initially many of the symptoms are
mild, but as the immune system deteriorates the symptoms worsen.
Where do opportunistic infections and cancers occur?
Symptomatic HIV infection is mainly caused by the emergence of opportunistic infections
and cancers that the immune system would normally prevent. These can occur in almost all
the body systems, but common examples are featured in the table below.
As the table below indicates, symptomatic HIV infection is often characterised by multisystem disease. Treatment for the specific infection or cancer is often carried out, but the
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underlying cause is the action of HIV as it erodes the immune system. Unless HIV itself can
be slowed down the symptoms of immune suppression will continue to worsen.
System
Examples of Infection/Cancer
Respiratory system
Pneumocystis Carinii Pneumonia (PCP)
Tuberculosis (TB)
Kaposi's Sarcoma (KS)
Gastro-intestinal system
Cryptosporidiosis
Candida
Cytomegolavirus (CMV)
Isosporiasis
Kaposi's Sarcoma
Central/peripheral Nervous system HIV
Cytomegolavirus
Toxoplasmosis
Cryptococcosis
Non Hodgkin's lymphoma
Varicella Zoster
Herpes simplex
Skin
Herpes simplex
Kaposi's sarcoma
Varicella Zoster
STAGE 4 : Progression from HIV to AIDS
As the immune system becomes more and more damaged the illnesses that occur become
more and more severe leading eventually to an AIDS diagnosis.
At present in the UK an AIDS diagnosis is confirmed if a person with HIV develops one or
more of a specific number of severe opportunistic infections or cancers. In the US, someone
may also be diagnosed with AIDS if they have a very low count of T helper cells in their
blood. It is possible for someone to be very ill with HIV but not have an AIDS diagnosis.
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III. New Dilemmastories of the pupils:
The right to live
(written by Alexandra, Andrei, Ambros)
Eve is married to Tom and they are both HIV positive. After a few years they decide to have
a baby, even if it was way later that she found out about her husband´s disease. And faith
has it that at the moment of speking she is pregnant.
Despite the happyness brought by the news of having a baby, they need to decide whether
to keep the baby or not and no option is missing the negative aspects. Even though there is
a small chance for the baby to be infected with HIV ( 25% to be exact ) they don´t know if
they should cosider abortion or not.
1. Does anyone have the right to end an innocent life before it even began, of a child
who has not even seen the sunlight?
2. Would it be right for a child to come to this world already infected, to be marginalized
by society and live in darkness, like an outsider almost all his life, despite the human
rights, that can be wrong in this case?
3. Should someone be stopped from being a parent just because of a viruse like HIV?
The unwanted baby
(written by Ingrid, Iris, Min)
Rosa L. 19 years old, takes heroin, and after one year of being addicted she realizes, that
she is HIV positiv even though she does not know, when and why she got infected.
Although her body is very weak, Rosa has got a boyfriend, who unfortunately is drug
addicted too. They have a pretty rough love affair, and after a time she realizes that she´s
pregnant. They live in very bad conditions and also don´t know how to survive the next
day.
An other problem would be, that the baby will be drug addicted after giving birth and the HI
virus could infect the baby too. Her boyfriend left her, after the sad message of her
pregnancy, so she is left on her own.
Although she is very depressive and living in unluckily circumctances she wants to keep the
baby.
For her baby it would be better if she aborted it, because of the risc that her baby gets all
her infections too.
•
•
•
•
What shall she do, if she wants to keep her baby?
Is is morally and ethically right to save the unborn from the consequences?
Who can help her, to live an healthier life?
If she keeps the baby, should she give it free for adoption, to avoid a bad influence
and to offer her baby a better life?
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Two children – one life
(written by Magdalena, Maria, Veronika)
Mr and Mrs Smith are happy because they are expecting two babies. But after six months
of pregnancy the doctor tells them that the children are siamese twins and they are grown
together at their heads. Also their brains are grown together. If the doctor does not divide
them they will be handicapped for life, but if he does then one of the twins will die for sure
because of the fact that their brains are grown together in a very critical way.
The last months of pregnancy are very difficult for Mrs Smith because she is placed before a
decision: Should she have her babies split or not?
•
•
•
Can she as a mother or any human decide whether another should live or die?
Would it be right to burdon a child with the fate of never being normal?
Doesn’t everyove have a right to live?
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IV. Twins problem – internet research:
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=pubmed&dopt=Abstract
&list_uids=9462196&query_hl=3&itool=pubmed_docsum
Date: 16.6.2006
TWINS PROBLEM
A policy of expectant management until 32 weeks of gestation in 29 dichorionic
pregnancies discordant for growth retardation resulted in an overall mortality of 24% (95%
CI 13.9-37.2%) and a handicap of 2.2% (95% CI 0-12.0%). None of the normally grown cotwins died or was handicapped as a result of iatrogenic prematurity.
The Harris Birthright Research Centre is a referral unit for fetal diagnosis and treatment.
Details on patients' demographic characteristics, medical and obstetric history, and
ultrasound findings are entered into a computer database at the time of the ultrasound
examination. Twin pregnancies were classified as dichorionic if the placentas were not
adjacent to each other or the lambda sign was present.1 2 The results of any investigations
and pregnancy outcome were entered into the database as they became available.
Written by Andrei:
It is better not to divide them taking in account the fact that one is condemned to death
and the other one can live and experience a proper life. What is happiness? If they both live
together and suffer this handicap all their life, they know it´s the only way they can get to
know the meaning of existence on this world. If they haven´t experienced anything else,
then they adapt and accept their condition in life. It´s better to live in a different way, apart
from society then not to know what life feels like, when you have all the power you need so
you can shout that you lived in this world.
No human being has the right or the power to decide the faith of another. It´s worse then
genocide.
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http://www.9am.ro/revistapresei/Social/6477/Siameze-romance-separate-in-America
Date: 16.06.2006
Siameze romance separate in America
Sursa: Libertatea, 16 Martie 2005
In ianuarie 2004 s-au nascut primele siameze romane lipite in zona capului: Anastasia si
Tatiana. Desi impart tesuturi si vase de sange, gemenele nu au functii ale creierului
comune. Desi au stiut inca din timpul sarcinii ca vor avea siameze, parintii fetitelor nu s-au
gandit sa renunte la ele. "Daca esti credincios stii ca orice copil conceput trebuie sa se
nasca. Unii inteleg gresit, dar copilul nu este un drept al parintelui, ci un dar", explica tatal
fetelor, Alin Dogaru. Cele doua fetite sunt acum la Dallas, asteptand operatia de separare.
Tatiana si Anastasia au venit pe lume in 13 ianuarie 2004. Nimeni nu poate sa spuna care
dintre ele a fost prima, intrucat cele doua fetite sunt... un tot, fiind lipite in zona capului.
Desi stiau acest lucru de cand gemenele aveau 19 saptamani, parintii lor nu s-au gandit nici
o clipa la sa renunte la sarcina. Din motive religioase, din motive umane, cert e ca asa le-a
spus sufletul. Mai intai au sperat ca aparatele medicale mint. Cand nasterea a confirmat ca
aveau dreptate au inceput sa creada tot mai tare ca fetele vor putea fi separate printr-o
interventie chirurgicala. Acum sunt la un pas de implinirea acestui vis, doar ca mai au
nevoie de un... miracol: operatia costa minimum doua milioane de dolari, bani pe care cei
doi n-ar putea sa-i agoniseasca nici in zece vieti. in primavara anului 2003, Alin si Claudia
au trait o mare bucurie afland ca urmeaza sa li se nasca un copil. "Sotia mea pierduse doua
sarcini dupa ce a nascut-o pe Maria, asa ca am fost foarte fericiti", spune parintele. La
prima ecografie, pe care Claudia l-a facut-o in saptamana a noua, cei doi au aflat ca
asteapta, de fapt, gemeni.
"Medicul ne-a spus chiar de-atunci ca sunt foarte apropiati. Dar n-a putut sa ne spuna daca
sunt lipiti", rememoreaza, Alin Dogaru. A fost insa suficient ca sotii Dogaru sa inceapa sa-si
faca ganduri. "Exact in acea perioada cumparasem o carte despre viata intrauterina, pentru
una din lucrarile mele. Iar Claudia, rasfoind cartea, a deschis exact la capitolul despre
gemeni monozigoti, unde se vorbea despre diviziunea neterminata... A avut o strangere de
inima". Au preferat sa nu se gandeasca deloc la aceasta varianta. in august au venit sa-si
petreaca vacanta in Romania, iar in septembrie, cand s-au intors in Italia, s-au dus din nou
la ecograf. "Era 19 septembrie, iar sarcina era in saptamana a 19-a. Era cert ca fetitele sunt
lipite in zona craniana, iar ginecologul ne-a facut o programare pe 2 octombrie, la un
specialist din Bologna", spune preotul. Oricum, tot ceea ce stiau despre fetitele lor erau
datele furnizate de aparate. Iar acestea, spune Alin, se puteau insela. in plus, pe 13
octombrie au aflat, o data cu intreaga planeta, ca doi siamezi egipteni uniti in zona capului
au fost separati cu succes in SUA. Iar speranta a renascut in sufletele lor. in decembrie,
Claudia a fost programata la o radiografie cu rezonanta magnetica.
"Medicii au observat ca gemenele au vase de sange comune, ceea ce insemna ca nu puteau
fi operate imediat dupa nastere", povesteste Alin. Claudia a fost internata in saptamana a
33-a de sarcina. "Am dus-o la spital in 9 ianuarie, iar fetitele s-au nascut, prin cezariana, in
13 ianuarie, la ora 19.40. Cand a iesit sotia din operatie, la 20.30, mi-a spus ca medicii nu
i-au aratat gemenele. si pe mine abia m-au lasat sa le vad, pe la ora 23, dupa o gramada
de aprobari", spune tatal. Avand in vedere ca a facut o infectie la nastere, care nu i-a dat
voie sa coboare din pat, Claudia si-a vazut fetele abia pe 18 ianuarie, cand sotul sau a
organizat, la spital, ceremonia de botez, "cu toata randuiala".
Nas a fost un coleg si prieten de-al preotului Dogaru, care in acel moment se afla la studii in
Roma. Uneia din fetite i-au pus numele Anastasia (invierea - in greaca), iar celeilalte,
Tatiana (Regina Zanelor). Dupa doua saptamani de terapie intensiva, gemenele au fost
externate: respirau si mancau singure, ca orice copil normal. "Aveam o strangere de inima,
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sa nu se intoarca si sa-si faca rau una alteia; sau sa nu cada din patut... Cand erau foarte
mici le intoarceam o data la trei ore, sa nu cumva sa se sufoce. Am avut o mica problema si
cu hainele, pentru ca nu erau bune decat cele mai largi la gat, care se pot imbraca pe la
picioare. in plus, nu putem sa le facem baie ca unor copii normali, asa ca ne-am invatat sa
le spalam doar cu buretele", explica tatal. in timp ce sotii Dogaru asteptau un raspuns din
partea medicilor de la Roma, sora lui Alin, Patricia, stabilita in Statele Unite, a gasit adresa
de e-mail a medicului Kenneth E. Salyer, care ii operase cu succes in 2003 pe cei doi simezi
egipteni, si i-a trimis un mesaj la care a primit raspuns chiar a doua zi.
"Medicul era de acord sa analizeze cazul lor si ne-a transmis sa-i trimitem radiografiile
fetitelor", le-a mai povestit Alin Dogaru reporterilor de la Clujeanul. I-au scris in aprilie si
dupa o luna au primit un raspuns in care doctorul ii spunea ca dupa ce s-a consultat cu toti
membrii echipei sale, a ajuns la concluzia ca separarea este posibila, dar ca trebuie sa le
evalueze personal pe gemene. Pe 19 octombrie 2004, Claudia, Tatiana si Anastasia urcau
intr-un avion cu destinatia Dallas. in SUA fetitele au fost supuse unor minutioase analize. in
final, medicii au "votat" pentru separare, mai ales ca in lipsa interventiei sansele de
supravietuire ale gemenelor ar fi nule.
"Italienii au promis ca ne ajuta, fiind un caz special. Dar cu romanii nu am reusit nimic", mai
spune Alin. A incercat sa le aduca in Romania, dar compania TAROM nu vrut sa
sponsorizeze nici macar un loc in avion, sa le poata transporta pe fetite in conditii decente.
"American Airlines a putut face acest lucru pentru calatoria in SUA", marturiseste parintele.
Nu se simte amaraciune in glasul sau. Pentru ca stie ca fiecare om trebuie sa-si poarte
crucea. Dar s-ar bucura sa gaseasca mai multa solidaritate si ingaduinta. Nu pentru el, ci
pentru cele doua micute care nu stiu ca ar putea sa se priveasca in ochi, sau sa se sarute pe
obraji... Cei care doresc sa-i ajute pe sotii Dogaru o pot face donand bani in conturile cu
numerele 25464841300 (in lei) si 25465301300 (in valuta), deschise la Banca Romana de
Dezvoltare.
A treia operatie reusita in lume a fost a siamezelor Boaru
* Prima documentare despre siamezi a aparut in anul 1100, in Anglia. Numele, de
"siamezi", li s-a dat insa sapte secole mai tarziu, de la Siam (vechea denumire a Thailandei
de azi), locul in care s-au nascut, cu pantecele unite, Eng si Chang (foto jos). Cand aveau
17 ani, mama lor, o vaduva saraca lipita, i-a vandut unui negustor scotian si unui capitan de
vas englez. Asa au inceput gemenii sa cutreiere lumea, fiind prezentati in spectacole de circ.
Dupa patru ani, si-au castigat libertatea si au inceput sa faca turnee pe cont propriu. Au
strans o avere considerabila si si-au luat numele Bunker. in drumurile lor prin toate colturile
lumii, gemenii au cautat zadarnic un medic care sa-i separe. in 17 ianuarie 1874, Chang,
care de trei ani paralizase partial, a murit in somn. Disperat, Eng a chemat un doctor care
sa incerce sa-l desparta de fratele mort. Din cauza groazei insa, a murit si el inainte de
sosirea posibilului salvator.
* in Romania, cazul in jurul caruia s-a facut cea mai mare valva a fost cel al Linei si
Gherghinei Boaru, care s-au nascut cu aproape o cincime a corpului comuna. in vara lui
1982 vestea venirii pe lume a unor siameze intr-o locuinta modesta din Botosani a facut
ocolul intregii tari.
La maternitate oamenii ajunsesera sa stea la coada spre a le putea vedea - cu 50 de lei dati
medicului - pe cele doua fetite. Dupa sase luni in care au trait lipite una de alta, Lina si
Gherghina (in medalion) au fost separate printr-o interventie chirurgicala la o clinica din
Elvetia. Era a treia reusita de acest fel la nivel mondial. La 24 de ani, cele doua duc un trai
normal, fac cursuri de croitorie si canta in zilele de duminica in corul bisericii locale.
* in urma cu 7 ani, o femeie din satul aradean Peregu Mic a nascut doua gemene cu
piepturile lipite, Melinda si Izabela. De la Arad, siamezele au fost mutate la Timisoara. Cu
toate ca medicii de acolo le-au spus ca mai trebuie asteptat cam o jumatate de an, Suzana
si Emerike Szabo si-au dus dupa trei luni fetitele la Szeged, in Ungaria, unde acestea au fost
operate si despartite imediat.
14
http://en.wikipedia.org/wiki/Parasitical_twin
Date: 16.6.2006
A parasitic twin is the result of a situation related to the process that results in teratomas,
vanishing twin, and conjoined twins – two unique embryos begin developing in utero, but
something goes wrong. Parasitic twins are also known as asymmetrical conjoined twins
or unequal conjoined twins. Parasitic twins are a variation on conjoined twins—except
one of the twins stopped developing during gestation and is now vestigial to a healthy,
otherwise mostly fully-formed individual twin. They are defined as parasitic, rather than
conjoined, by being incompletely formed or wholly dependent on the body functions of the
complete fetus.
15
http://bmj.bmjjournals.com/cgi/content/full/321/7264/788/f
Date: 16.6.2006
BMJ 2000;321:788 ( 30 September ) News extra
Conjoined twins should be separated
Clare Dyer legal correspondent, BMJ
The conjoined twins whose plight has transfixed Britain for weeks should be separated to
save the life of the stronger twin, three appeal court judges ruled last week.
The ruling means that doctors may go ahead with the operation to stop Mary, the weaker
twin, draining the life from Jodie, the stronger. Mary has no functioning heart or lungs and
relies on her sister for oxygenated blood. Without an operation, both twins will die.
Three appeal court judges ruled unanimously that the operation should take place in Mary’s
best interests. But the parents of the 6 week old girls, who want nature to take its course,
may take the case further, to the House of Lords. The appeal court gave permission for the
parents and the official solicitor, representing Mary, to appeal to the lords.
As the BMJ went to press, it seemed unlikely that the official solicitor would take the case
further, but the parents’ solicitor, John Kitchingman, said they had not yet decided whether
to appeal.
The parents, Roman Catholics from the Mediterranean island of Gozo, came to St Mary’s
Hospital, Manchester, for the delivery after a scan showed they were expecting conjoined
twins.
Doctors wanted to operate to give Jodie a chance of life, but the parents refused consent,
saying that God’s will should prevail. The case went to the family division of the High Court
in London, where Mr Justice Johnson ruled in August that the operation should go ahead.
Jodie is thought to be of normal intelligence, and doctors believe there is a good chance that
she will eventually walk unaided. But when the parents appealed, it seemed that the
criminal law might pose an insuperable obstacle.
English law forbids the killing of an innocent person for the benefit of another. In a lengthy
and closely reasoned judgment, the judges decided that the doctrine of necessity would
provide the doctors with a defence to a charge of murder. Doctors had conflicting duties to
both babies, and, where this applied, the life of the one who was in any event doomed to
die could be sacrificed.
Their judgment, which makes new law, justifies the killing of Mary as a defence of Jodie, to
stop her from being drained of life by her sister. Lord Justice Ward used the analogy of a 6
year old boy randomly shooting others in a playground. He had no doubt that to kill the boy
if necessary to protect the others would be lawful.
To allay fears that the ruling could be used to try to justify a doctor in prematurely ending
the life of a terminally ill patient, Lord Justice Ward spelled out that it covered only the
narrowest of circumstances: where X cannot be saved without killing Y; where Y, by
continuing to exist would inevitably kill X; and where X is capable of an independent life but
Y is not, whatever the medical intervention.
16
http://www.stern.de/wissenschaft/mensch/530056.html?eid=529542
Date: 16.06.2006
Drei Tage nach der Trennung…
…von ihrer siamesischen Zwillingsschwester Tabea schwebte die kleine Lea am
Sonntag noch immer in Lebensgefahr.
Der Zustand von Lea sei unvermindert "kritisch, wenngleich stabil", lautete das Bulletin der
Ärzte über den Zustand des Mädchens aus dem nordrhein-westfälischen Lemgo. Lea wird im
Kinderhospital der Johns Hopkins Universität in Baltimore (US-Bundesstaat Maryland)
behandelt.
Heute will sich Prof. Richard Redett mit den Eltern treffen, ein plastischer Chirurg. Dabei
wird es um die kommende Operation gehen, bei der die Abdeckung des Kopfes noch einmal
neu angelegt werden soll, weil es bei der Trennung von Lea und Tabea ziemlich schnell
zugegangen ist in der Nacht zum Donnerstag vergangener Woche. So muss auch ein kleines
Stück künstlicher Abdeckung entfernt und durch eigene Haut ersetzt werden. Mehr wird
dabei aber nicht geschehen. Alle hoffen, dass Lea diesen Eingriff durchhalten wird.
In einem Trauergottesdienst hatten am Samstag mehr als 800 Menschen in Lemgo der
kleinen Tabea gedacht, die nach der Trennung von ihrer Siamesischen Zwillingsschwester
Lea am Donnerstag in Baltimore gestorben war. Ein Angehöriger der mennonitischen
Gemeinde berichtete, die Menschen seien traurig und bedrückt. Auch die Großeltern der
beiden Mädchen nahmen an der Trauerfeier teil. Tabea soll in ihrer Heimatstadt im engsten
Familienkreis beigesetzt werden. Die Gläubigen beteten bei dem Gottesdienst auch für das
Leben ihrer Schwester.
Lea müsse noch mehrmals operiert werden, damit ihre Schädeldecke endgültig geschlossen
und der Kopf normal geformt werden könne. Das sagte der Leiter des Chirurgenteams,
Benjamin Carson. Nach ihrer Entlassung aus der Universitätsklinik "in einigen Wochen oder
Monaten" könne sie nach Lemgo zurückkehren und werde anschließend von deutschen
Ärzten betreut. Der Neurologe Tilman Poster und der Kinderarzt Martin Bruns hatten die
Eltern in die USA begleitet, um ihnen die Trennungsprozedur und den anschließenden
Zustand der Kinder erläutern zu können.
Tabea hatte die insgesamt rund 30-stündige Operation nicht überlebt. Sie starb am frühen
Donnerstag, kurz nachdem sie von Lea getrennt und aus dem Operationssaal gefahren
worden war. Als Todesursache gab Carson unregelmäßige Herzschläge und hohen
Blutverlust während des Marathoneingriffes an. Die Zwillinge waren an der Schädeldecke
zusammengewachsen und teilten sich die größeren Blutgefäße im Hirn.
17
http://www.stern.de/wissenschaft/mensch/529804.html?eid=529542
Date: 16.06.2006
Tabea ist gestorben, Lea lebt
Chronologie der Ereignisse
Die Trennung der deutschen siamesischen Zwillinge Lea und Tabea am Johns
Hopkins Hospital in Baltimore endete dramatisch: Tabea ist tot, Lea dagegen ist in
kritischem, aber stabilem Zustand.
Mittwoch, 15.09.2004
Die Trennungsoperation der siamesischen Zwillinge war am Morgen amerikanischer Zeit
wiederaufgenommen worden, nachdem sich Tabea von zwei Herzstillständen am
vergangenen Samstag so weit erholt hatte, dass sich die Ärzte um Professor Benjamin
Carson zum Weitermachen entschließen konnten.
Gegen 06:00 Uhr EST (12:00 Uhr MESZ) hatten die Vorbereitungen der Operation
begonnen, etwa drei Stunden später wurden die Nähte vom Samstag wieder geöffnet. Die
zum Schutz der Gehirne provisorisch eingepflanzten Titanplatten wurden zunächst nicht
entnommen. Stattdessen begann das Team nach der Entfernung eines weiteren
gemeinsamen Knochenstückes am Hinterkopf der Zwillinge etwa um 12:30 EST (18:30
MESZ) damit, das noch verbundene Gefäßsystem der Kinder weiter zu trennen. Nach knapp
zwei Stunden war das etwa zur Hälfte und ohne weitere Komplikationen gelungen.
Es war vorgesehen, die nach dem Abbruch der Trennung am vergangenen Samstag
eingepflanzten Expander unter der zusammengenähten Kopfhaut der Mädchen wieder zu
entfernen. Diese Silikonkissen hatten in den vergangenen Tagen dafür gesorgt, dass sich
die über Wochen künstlich gedehnte Haut nicht wieder zusammenziehen konnte. So sollte
sichergestellt werden, dass nach der Trennung genügend Gewebe für den endgültigen
Verschluss der beiden Köpfe zur Verfügung steht.
15:30 Uhr EST (21:30 Uhr MEZ): Die Zwillinge sind mit ihrem OP-Gestell wieder mit dem
Gesicht nach oben gedreht worden. Obwohl das venöse Gefäßgeflecht noch nicht völlig
getrennt worden ist, soll nun offenbar damit begonnen werden, die dicht
aneinanderliegenden Gehirne der Mädchen Stück für Stück auseinander zu bringen. Jetzt
steht ein sehr heikler Teil der OP an: die Trennung des Geflechtes der HinterkopfBlutgefäße. Der Abschluss der OP wird nach jetzigem Stand voraussichtlich nicht vor
Mitternacht EST (06:00 Uhr MEZ am Donnerstag) erfolgen können.
17:30 Uhr EST (23:30 Uhr MESZ): Lea und Tabea geht es immer noch gut. Das
Chirurgenteam arbeitet sich weiter zwischen den dicht aneinander liegenden Gehirnen der
Mädchen hindurch. Da mit größter Vorsicht vorgegangen werden muss, um Verletzungen
des empfindlichen Gewebes und daraus resultierende neurologische Schädigungen der
Zwillinge zu vermeiden, verwenden die Ärzte inzwischen auch ein Mikroskop. Sie kommen
langsam voran, haben bislang aber offenbar Erfolg bei dem hochkomplizierten Eingriff.
20:00 Uhr EST (02:00 Uhr MESZ): Die Trennung der beiden Gehirne von Lea und Tabea
geht weiter voran. Da einige Bereiche aber wohl engeren Kontakt haben, als zunächst
angenommen, könnte sich der Abschluss der Operation am Johns Hopkins Hospital
verzögern. Wie der stern erfuhr, wird jetzt davon ausgegangen, dass die Gehirne nicht vor
Mitternacht Ortszeit (06:00 Uhr MESZ) getrennt sein werden. Es scheint auch möglich, dass
dieser Teil des Eingriffs sogar noch einige Stunden mehr in Anspruch nehmen wird.
18
http://science.orf.at/science/news/80586
Date: 16.06.2006
Siamesische Zwillinge: Tag Zwei der Operation
Sonntag Früh haben Ärzte in Singapur mit einer
riskanten Operation begonnen: Sie wollen
erwachsene siamesische Zwillinge trennen. Die
Operation wird voraussichtlich noch bis Dienstag
Früh dauern.
Bisher wurden solche Eingriffe nur an Kindern
vorgenommen. Die Patientinnen - 29 Jahre alte
Schwestern aus dem Iran - sind am seitlichen
Hinterkopf miteinander verbunden.
"Operation Hoffnung"
Ladan liebt die Farbe blau, Laleh bevorzugt Rot. Die
Schwestern sind am seitlichen Hinterkopf
miteinander verbunden. Jahrelang waren die
29jährigen Frauen aus dem Iran auf der Suche
nach Ärzten, die ihnen ein eigenständiges Leben
ermöglichen. "Operation Hoffnung" wird der Eingriff
im Raffles-Privatkrankenhaus in Singapur nun
genannt.
Einmalige und riskante Operation
Bisher schlugen vier von fünf solcher Trennungen
fehl, sagte der leitende Chirurg Keith Goh vor der
Operation. Erwachsene siamesische Zwillinge zu
trennen, habe vor ihm noch überhaupt niemand
versucht.
"Nicht bloße Kosmetik"
Der Eingriff sei nicht "bloße Kosmetik" und nicht
ausschließlich ein ersehnter Wunsch der
Schwestern, sondern er sei auch medizinisch zu
begründen, hieß es am Sonntag von der Privatklinik
in Singapur. Denn Voruntersuchungen hätten
gezeigt, dass der Druck in den Köpfen der Zwillinge
fast beim Doppelten des Normalwertes liege.
Ohne die Operation hätten die Zwillinge laut
Raffles-Krankenhaus unter Kopfschmerzen, Migräne
oder Sehstörungen leiden können, im schlimmsten
Fall hätte sich die Hirnleistung verschlechtern
können. Allerdings hätten die Schwestern auch
19
ohne die Operation weiterleben können, teilte das
Krankenhaus mit.
"30 Jahre sind genug"
Das Risiko der Operation ist groß. Das haben die behandelnden
Ärzte nie bestritten. Auch Ladan und Laleh sind sich dessen
bewusst, doch sie wollen nicht länger warten und auf
medizinische Fortschritte hoffen, denn - so meinten sie vor der
Operation - 30 Jahre seien genug.
Die 29jährige Ladan vor der Operation: "Wir hoffen, dass die
Operation gut geht. Wir sind glücklich und aufgeregt und ein
bisschen nervös - vor allem ich." Die Schwestern meinten vor
der Operation: "Wir wollen einander endlich ohne Spiegel
anschauen können."
Fortschritte am Sonntag
24 Ärzte und 100 Helfer arbeiten seit Sonntag Früh
im Schichtdienst. Die Schwestern sind seitlich am
Hinterkopf miteinander verbunden, sie haben zwar
getrennte Gehirne, teilen sich aber eine wichtige
Vene in diesem Bereich.
Sonntag Nachmittag haben plastische Chirurgen
begonnen, die Schädel der Schwestern zu trennen.
Dann übernahmen Neurochirurgen und begannen in
der Nacht, die Gehirne zu trennen, die durch
Blutgefäße miteinander verbunden sind.
Mit Hilfe von zwei Venenstücken aus dem
Oberschenkel einer der Schwestern sollen dann die
zerstörten Verbindungen neu hergestellt werden.
(Die Venenstücke wurden in einer Vor-Operation
am Sonntag entnommen.)
Operation voraussichtlich bis Dienstag
Sind diese Schritte geschafft, müssen
Schädelknochen und Haut ersetzt werden. Der
Eingriff wird laut dem Raffles-Spital in Singapur
zumindest bis Dienstag Früh dauern.
Auch wenn bis dahin alles gut geht, wenn es den
Ärzten gelingt die Schwestern zu trennen, kann es
auch noch später zu Komplikationen kommen: Wie
bei jeder großen und langen Operation sind
Infektionen oder Blutgerinnsel nicht
auszuschließen.
20
http://www.conjoined-twins.i-p.com/
Date: 16.06.06
Conjoined twins
When conjoined twins are born, it's automatically assumed that they should be separated.
But, Alice D. Dreger, a Michigan State University medical historian disagrees with this. She
says that, “When it comes to cases in which one of the twins must be ‘sacrificed’, it is
ethically wrong to take one life so another may live.” She argues that it is unethical to kill
one conscious head, given that we wouldn't do that in any other case." She also quotes, "It
is unethical to treat children with unusual anatomies according to a different set of ethical
guidelines than other children."
Alice D. Dreger agrees to the separation of very young twins if the surgery is simple enough
and that it doesn't result in the death or long-term disability of one of the twins. Dreger
points out that separation surgeries in which one of the twins was sacrificed never are
successful. At least nine have been attempted, and none has resulted in any long-term,
healthy survivor. "In all of the cases, the intentionally sacrificed twin died," she says. "But,
notably, in not a single case has the twin chosen to survive ever actually survived to go
home or even live free of a ventilator."
27
V. Diary
1. AIDS and human rights
1.1.
First decision and first discussion:
We discussed the first dilemma story and we were all of the same opinion, so we
decided that we wanted to read the next story. For us the friendship story wasn’t
really a dilemma, therefore it wasn’t a very exciting discussion.
1.2.
First research:
First of all we tried to find basic information on HIV and AIDS, then the rights of an
infected employee as in our story.
1.3.
Role play:
We divided us into three groups and in each group there were three roles:
Michael(a), who is HIV positive and is applying for a job, Franz(iska), the personnel
manager, Johann(a), the boss of the company, who doesn’t want to hire her just
because she is positive.
1.4.
Second research:
This time we concentrated on the rights of infected people and tried to find more
arguments for our roles.
1.5.
Arguments of every character (which we also wrote on a flipchart):
Michael/a N.:
•
Qualification
•
Awareness of the disease
•
Image of the company
•
Nearly no risk of being infected
•
Closing eyes in front of the reality
•
No discrimination
•
All people are equal
•
No need to tell the employer
•
Medicine (treatment slows HIV down)
Franz/iska:
•
Discrimination, individual prevention, equality of law
•
Right to work
•
Protection of private life
•
No risk of infection
•
Qualification doesn’t depend on the disease
•
Differences between AIDS and HIV
28
Johann/a:
•
The risk of infection for other employees
•
If she got ill we must pay for her
•
Possibility to collapse during work time
•
She can disturb other persons
•
She didn’t inform anyone about medical condition, which is ????
•
We have the right to know everything about the people we employ
•
We have the right to be informed about her medical sondition before
employment has been made
•
She must be supervised all the time by medical specialist
•
HIV is going to be an epidemic, and we have t protect for this epidemic
1.6.
Second discussion:
This time we made a discussion with all the characters which was very interesting
and heated.
1.7.
Second decision:
Finally we were of the opinion that we wanted another topic with another dilemma
story, so we wrote new stories on our own.
29
2. The twins problem:
2.1.
New dilemma stories and decision for one story:
The stories we wrote in groups were named: The right to live, An unwanted baby
and Two children – one life. We voted and decided that the third one is the most
interesting one.
2.2.
First decision and first discussion:
At the beginning two of us were of the opinion that Siamese twins should be
separated as the rest thought that they should stay together.
2.3.
Internet research:
Again we tried to find basic facts on Siamese twins and then arguments for the
following discussion. It came out that one of us has changed her opinion, finally
there were three people for the separation and the rest were against.
2.4.
Discussion:
This was the most heated discussion because everyone was convinced that his/her
decision was the best one and tried to persuade the others. But in the end there
were no changes in the opinions.
2.5.
Experiment:
Two of us decided to do an experiment which should show what it is like to be
Siamese twins. We took a rope and tied them together on their heads. They tried to
walk and sit on a chair and realised that it was quite difficult.
2.6.
Last decision:
Although or because we discussed a lot and found many arguments nobody wanted
to change his/her opinion.

heart of europe

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