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Organisations offering support to the families of conjoined twins [top] [next]
Conjoined Twins International
PO Box 10895
Prescott
Arizona 86304 0895
USA
E-mail: dwdegeraty@myexcel.com
Website: www.conjoinedtwinsint.com/home.htm
Network of international families of conjoined twins. Offers support and information. The group also distributes a quarterly newsletter.
Family Village – Conjoined Twins
http://familyvillage.wisc.edu/lib_conjoined.htm
US disability site dedicated to providing information, resources, and communication opportunities for disabled people and their families. This page contains links to a range of information on conjoined twins.
Organisations offering support to bereaved parents and their families [top] [next]
The British Association for Counselling and Psychotherapy (BACP)
35-37 Albert Street
Rugby CV21 2SG
Information line: 0870 443 5252 (Mon-Fri 8.45am-5pm)
E-mail: bacp@bacp.co.uk
Website: www.bacp.co.uk
BACP can provide you with a list of private counsellors in your area, plus information on counselling and choosing a counsellor. Telephone or send an SAE to the above address. Alternatively, you can search for a counsellor at the website which, along with an online directory of counsellors, contains details concerning membership, training and an extensive publications list.
The Child Bereavement Trust
Aston House
High Street
West Wycombe HP14 3AG
Tel: 01494 446648
Information and support line: 0845 357 1000 (Mon-Fri 9am-5pm)
E-mail: enquiries@childbereavement.org.uk
Website: www.childbereavement.org.uk
Offers information and advice, plus supportive resource materials for grieving families. Also conducts a range of training courses for professionals, schools and other educational establishments.
The Child Death Helpline
Helpline: 0800 282 986 (everyday 7pm-10pm; and Mon, Wed, Fri 10am-1pm)
Website: www.childdeathhelpline.org.uk
Provides a listening service that offers emotional support to anyone who has been affected by the death of a child. The helpline is staffed by bereaved parent volunteers. The service is based at Great Ormond Street Hospital and the Alder Centre in Liverpool.
The Compassionate Friends
53 North Street
Bristol BS3 1EN
Helpline: 0117 953 9639 (everyday 10am-4pm and 6.30-10.30pm)
E-mail: info@tcf.org.uk
Website: www.tcf.org.uk
Offers understanding, support and friendship to bereaved parents, and their families, who have lost a child of any age and from any circumstance. Support is offered through the helpline, local group meetings, one-to-one visits, letter contact, weekend retreats and gatherings. They also produce a quarterly newsletter and a range of other publications for the family and professionals, and run a postal library service.
Cruse Bereavement Care
Helpline: 0870 167 1677 (Mon-Fri 9.30am-5pm)
Young Person's Helpline: 0808 808 1677 (freephone)
E-mail: info@crusebereavementcare.org.uk
Website www.crusebereavementcare.org.uk
Runs a helpline and offers counselling, advice and support to anyone who has been bereaved.
Stillbirth and Neonatal Death Society (SANDS)
28 Portland Place
London W1B 1LY
Head Office: 020 7436 7940 (Mon-Fri 10am-5.30pm)
Bereavement helpline: 020 7436 5881 (Mon-Wed 9.30am-5.30pm)
E-mail: support@uk-sands.org
Website: www.uk-sands.org
Provides support over the phone and can put you in touch with a local befriender who is also a bereaved parent. Publications and information for parents and healthcare practitioners available from SANDS head office.
Tommy's the baby charity
3 Laurence Pountney Hill
London EC4R OBB
Pregnancy Info Line: 0870 777 3060
General office: 0870 770 7070
E-mail: mailbox@tommys.org
Website: www.tommys.org
Funds a national programme of research aimed at understanding and preventing premature birth, miscarriage and stillbirth.
Websites providing information to anyone affected by pregnancy loss or multiple births [top] [next]
Babyloss
www.babyloss.com
Provides information and support online for women and their partners who have experienced the devastating loss of a baby.
Bliss
www.bliss.org.uk
National charity concerned with the care of premature babies or sick new-born babies as well support of their parents.
Coping with the Death of a Child
http://hcd2.bupa.co.uk/fact_sheets/
mosby_factsheets/coping_death_child.html
BUPA factsheet that looks at the impact of the death of a child, the stages of grief and how to cope.
The Miscarriage Association
www.miscarriageassociation.org.uk
Provides support and information to anyone affected by pregnancy loss, with over 50 support groups across the UK. Publishes a variety of informative leaflets and factsheets which can be ordered online.
Multiple Births Foundation
www.multiplebirths.org.uk
Provides advice and training to enable health professionals to identify, prevent or limit the problems experienced by multiple birth families.
Multiplicity: The special challenges of parenting twins & more
www.synspectrum.com/multiplicity.html
This site lists organisations, print and website resources that may be helpful for parents facing the challenges of raising multiples, working through loss of one or more multiples, or raising one or more premature or special needs child(ren).
National Childbirth Trust: Pregnancy and Babycare
www.nctpregnancyandbabycare.com
Articles and information on pregnancy and birth, including special circumstances such as twins and multiple births, and stillbirth and neonatal death.
Twins and Multiple Births Association Bereavement Support Group (TAMBA BSG)
www.tamba-bsg.org.uk
Tamba BSG is a parent-to-parent support group run by bereaved parents. All BSG supporters are volunteers and are parents who have lost a child or children during a multiple pregnancy or at any stage after birth. The website features personal stories, remembrance poems, contact details and useful publications.
Websites of institutions conducting or researching into conjoined twin surgery [top] [next]
American Society of Paediatric Neurosurgeons
www.aspn.org
Offers information about the Society, its missions and goals to provide leadership in medical education and support clinical research.
The Center for Study of Multiple Births (CSMB)
www.multiplebirth.com
Resource for research and information about the causes, effects and problems of multi-foetal pregnancy. Contains articles on medical research carried out by the CSMB.
Children's Hospital of Philadelphia
www.chop.edu/cgi-bin/consumer/index.jsp
Leading US hospital for separation surgery where Dr James O'Neill has operated on 17 conjoined twins and advised on 50 cases. Offers online information on a variety of diseases and conditions.
Great Ormond Street Hospital, London
www.ich.ucl.ac.uk
One of the leading centres for the management of conjoined twins. Contains references to articles on separation surgery by Professor Lewis Spitz and Dr Edward Kiely in the British Journal of Surgery and the Journal of Paediatric Surgery.
Michigan State University
www.msu.edu/home
Contains several biographical references to Dr Alice Dreger, a teacher at the University, who is an expert on the ethical questions surrounding conjoined twins.
Primary Children's Medical Center, Salt Lake City
www.ihc.com/xp/ihc/primary
Site for hospital in Utah where surgeon Dr Marion Walker has successfully separated conjoined twins. Offers a children's health information service with a wide range of articles.
Red Cross Children's Hospital, Cape Town
www.childrenshospitaltrust.org.za
Site for the South African hospital that has dealt with 34 cases of conjoined twins, more than any centre in the world.
Vanderbilt University, Nashville
www.vanderbilt.edu
Offers a biographical sketch of Dr James O'Neill, American surgeon, considered one of the world's leading specialists in conjoined twin surgery.
The Wellcome Trust Library
http://library.wellcome.ac.uk
The Trust, dedicated to funding medical research, houses this online library, which is open to the public and free of charge. It contains 88 references to books, articles, engravings and etchings of historical cases of conjoined twins.
Websites with medical and historical information about conjoined twins [top] [next]
Conjoined Twins
www.conjoined-twins.i-p.com
Site offering information on the different types and forms of conjoined twins. Includes images and video material of surgery conducted at The Children's Hospital of Philadelphia.
Mütter Museum Philadelphia
www.collphyphil.org/muttpg1.shtml
Attached to the College of Physicians of Philadelphia, the Museum's collection includes over 20,000 objects, including many photographs and other records of conjoined twins throughout history. The site offers an overview and a history of the museum, as well as links to the College Gallery and Historical Library.
Open Directory: Conjoined Twins
http://dmoz.org/Home/Family/
Multiples/Conjoined_Twins
List of links to features about conjoined twins.
A Social History of Conjoined Twins
http://zygote.swarthmore.edu/cleave4b.html
Gives information on conjoined twins dating back to the ancient world. Considers the significance they were believed to have at different times in history.
Twinstuff
www.twinstuff.com/conjoined.htm
Offers medical descriptions, statistics and biographical information resources on conjoined twins throughout history, including a five-minute real audio interview with conjoined twin, Lori Schappell. Also contains links to news items on recent cases worldwide, and is connected with an online discussion forum.
Websites with media and news items concerning conjoined twins [top] [next]
Blueridge Country
http://blueridgecountry.com/newtwins/twins.html
Online magazine that includes a biography of the lives of Chang and Eng Bunker.
Doctor's Guide
www.docguide.com/dg.nsf/ ..
Article on Tiesha and Iesha Turner who were born in 1991, joined at the chest and the abdomen. Celebrates a reunion with their doctors, five years after their successful separation at the Texas Children's Hospital.
Horizon
www.bbc.co.uk/science/horizon/
2000/conjoined_twins.shtml
Introduction and transcript of a BBC Horizon documentary on conjoined twins. Examines case histories and current moral dilemmas on the issues surrounding separation surgery.
Medicine University of Missouri, Columbia
http://web.missouri.edu/~philwb/choice.html
A section of this site looks at the media treatment of difficult medical issues. This page contains an article by Anastasia Toufexis considering the ethics in a recent American case where two conjoined twin girls were separated in circumstances that would result in the immediate death of one and the probable death of the other.
Newswise
www.newswise.com/articles/1998/4/TWINS.MSU.html
Contains an article by Dr Alice Dreger, Michigan State University's medical historian, considering the ethical and practical justifications for separating conjoined twins. She is critical of separation surgery and looks particularly at the low chances of survival normally had by either twin.
Websites related to the ethics of the Ladan and Laleh case [top] [next]
Cardiff Centre for Ethics, Law and Society
www.ccels.cardiff.ac.uk/issue/wilkinson.html
Article by Stephen Wilkinson, from the Centre for Professional Ethics at Keele University, looking at some of the ethical issues raised by this and similar cases.
The Guardian
www.guardian.co.uk/iran/story/
0,12858,994352,00.html
Feature from July 2003: The surgeons leading the team that separated Ladan and Laleh Bijani reject accusations that they acted unethically or unprofessionally in undertaking an operation other specialists had refused to attempt.
New Zealand Herald
www.nzherald.co.nz/storydisplay.cfm/ ..
Feature from July 2003: The deaths of Ladan and Laleh Bijani has raised questions about whether the highly risky operation to separate them should have been allowed to go ahead.
Ladan and Laleh Bijani: Your thoughts
http://newsvote.bbc.co.uk/mpapps/ ..
Comments received by the BBC website about the Bijani twins.
Websites related specifically to the Mary and Jodie case [top] [next]
British Medical Journal (BMJ)
http://bmj.com/cgi/content/full/321/7264/783/a
Contains a news report by Clare Dyer, the legal correspondent for the BMJ, explaining the legal justification offered for the Appeal Court's ruling.
British Medical Journal (BMJ)
http://bmj.com/cgi/content/full/321/7264/782
Article by Alexander McCall Smith, Professor of Medical Law at the University of Edinburgh, looking at the legal implications of the separating of conjoined twins Jodie and Mary.
BBC News
http://news.bbc.co.uk/hi/english/ ..
Contains a BBC interview with Professor of Medical Ethics, Raanon Gillon who explains why he believes the Court of Appeal ruling was wrong in overriding the wishes of the parents of Jodie and Mary. Also contains links to other articles on the case and detailed medical facts on the issue of conjoined twins.
The Guardian
www.guardian.co.uk/more_about/ ..
Complete archive of news articles related to the case of separation surgery for conjoined twins Jodie and Mary, which took place at St Mary's Hospital on 7 November 2000.
Books on the subject of conjoined twins [top]
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Conjoined Twins: An historical, biological and ethical issues encyclopedia by Christine Quigley (McFarland, 2003)
Presents entries on conjoined twins throughout history, the biological causes and effects of twins being born conjoined, and ethical issues such as self-support and separation surgery.
Get this book
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Entwined Lives: Twins and what they tell us about human behaviour by Nancy Segal (Plume Books, 2000)
A study of twins, bringing together the latest scientific research and case studies to explore the complexities of human behaviour and development. Chapter 15 gives a very good overview on conjoined twins.
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Joined at Birth: The lives of conjoined twins by Elaine Landau (Franklin Watts, 1997)
Aimed at 9-12-year-olds, this book explores the issue of conjoined twins, including a discussion of the difficult decision regarding physical separation that parents must face.
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Millie-Christine: Fearfully and wonderfully made by Joanne Martell (John F Blair, 2000)
Biography of conjoined twins Millie-Christine, who endured kidnappings and slavery, in both the United States and England, before rising to prominence as performers in travelling shows throughout Europe.
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One of Us: Conjoined twins and the future of normal by Alice Domurat Dreger (Harvard University Press, 2004)
Must children born with socially challenging anatomies have their bodies changed because others cannot be expected to change their minds? Dreger views conjoined twinning and other 'abnormalities' from the point of view of people living with such anatomies, and considers these issues within the larger historical context of anatomical politics.
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Psychological Profiles of Conjoined Twins by J David Smith (Praeger, 1988)
Explores the lives of many conjoined twins throughout history and includes anecdotal material as well as psychological tests. Both an essay on the human condition and an empirical study.
Get this book
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Duet for a Lifetime by Kay Hunter (Coward McCann, 1964)
Biography of conjoined twins Eng and Chang Bunker told with sympathy and delicacy by a descendant of the Scot who found and befriended the twins.
Out of print; may be available through libraries and specialist bookshops.
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