Conjoined Twins

1. Conjoined Twins Ashley Weingartner Megan Kuehn Justine Friedrich

2. Conjoined twins are identical twins that have not split properly after fertilization, they share a body and may share vital organs. Identical twins are created from a single fertilized egg. If the egg does not separate within 12 days, it will not split completely. Instead of creating two separate embryos, the two embryos will remain attached, causing the babies to grow into one another. What are Conjoined Twins?

3. Caring for Conjoined Twins • Caring for conjoined twins can be very challenging. • Conjoined twins that do survive often have serious physical challenges. • May be unable to move on their own, eat on their own, or control their own brain or heart function. • One twin usually relies on the other for nutrition, blood, and brain support.

4. History of Conjoined Twins • Conjoined twins have fascinated people for centuries. • They have been worshipped as gods and feared as “monsters”. • They play a role in our myths and are a part of circus sideshows.

5. History of Conjoined Twins • A popular term for conjoined twins is “Siamese twins” • The term comes from Eng and Chang Bunker who were famous conjoined twins born in Siam in 1811. • The term “Siamese twins” is no longer considered appropriate because they aren’t limited to any racial or ethnic group.

6. Conjoined twins are not a common occurrence. Only about one set of conjoined twins are born every 400,000 births, but only once in every 200,000 LIVE births. Are more likely to occur in India or Africa than in China or the United States. Conjoined twins are more often female than male, at a ratio of 3:1 or 70%. Are Conjoined Twins Common?

7. Statistics • Approximately 40-60% arrive stillborn • About 35% only survive one day • Overall survival rate is between 5 and 25%

8. Types of Conjoined Twins • The classification of conjoined twins is determined by how the twins are joined. • There has been as many as three dozen separate types of conjoined twins in the last century. • All the names for conjoined twins end in “-pagos”. Which means “fixed” in Greek.

9. Conjunctions Not Involving the Heart or Umbilicus • Craniopagus: about 2% of conjoined twins • Joined at the skull, can share portions of the brain and blood circulation. -Vertical Craniopagus: joined at the top of the head at a 180-degree angle to each other. -Occipital Craniopagus: joined at the back of the head. -Frontal Craniopagus: joined at the forehead. -Parietal Craniopagus: joined at the side of the head.

10. A skull of craniopagus conjoined twins • Pygopagus conjoined twins

11. Pygopagus: about 19% of conjoined twins • Also called illeopagus. • Joined at the pelvis and lower spine. • Each twin has a separate heart. • Most male twins are still born, almost all pygopagus twins are female. • Many conjoined twins that survive to adulthood have been pygopagus. • Separation is usually successful, complications have been seen when the spinal chord is involved.

12. Midline Conjunctions • Thoracopagus: about 35% of all conjoined twins, the most common. • Joined at the upper chest from clavicle to sternum. • Can share a heart or a pericardium. • Separation is extremely risky, both twins often die. • Parapagus: 5% of conjoined twins • Also called diprosopus • Joined side by side at the torso, usually share three legs, but have separate heads and arms.

13. Thoracopagus conjoined twins. • Twins joined side by side called parapagus twins.

14. Cephalopagus: extremely rare • Also called syncephalus or janiceps. • Conjoined heads and necks, sometimes they share a heart. • Most are stillborn, those that aren’t die shortly after birth. • Omphalopagus: 30% of all conjoined twins • Joined at the abdomen, from sternum to the groin. • Often share liver, and parts of digestive system.

15. Cephalopagus twins are joined at the head and neck. • Chang and Eng Bunker, known as the original “Siamese twins” were omphalopagus twins.

16. Ischopagus: 6% of conjoined twins • Joined at the front pelvis and lower spine, with spines at 180-degree angles of each other. • About 70% of ischopagus twins have four legs; in the cases of three legs the third leg is shared between the twins, but not controlled by either. • Ischio-omphalopagus: • Combination of ischiopagus and omphalopagus twins. • Usually have a “Y” shape with three legs and a single set of genitalia.

17. Ischopagus twins joined at front pelvis and lower spine • Ischio-omphalopagus conjoined twins

18. Rare Forms of Conjoined Twins • Parasitic twins: • Asymmetrical twins with a smaller twin, being less developed and dependent on the other twin. • Can occur with any type of conjoined twins. • Fetus in Fetu: • A situation in which a fetus is contained completely within the body of its sibling.

19. Manar’s parasitic twin, Islaam, died after an extensive surgery. • This is a child with its sibling developing inside of it.

20. Separation • Separation of conjoined twins is usually performed at a very young age. • In some cases the brain or the heart must be separated in order to provide each twin with vital organs. • To date, about 200 separations have been performed.

21. When to Separate • In the past, surgery was delayed until twins were 6-12 months old so that they could become stronger. • Since there are now life-support systems and diagnostic tools are more sophisticated, earlier separation is more common. • Immediate separation is needed when one twin is stillborn. • Separation while twins are too young to realize that they are joined is thought to help their psychological recovery.

22. New Developments in Surgery • Since the 1970’s, chances of survival have improved dramatically. • Surgeons now routinely separate livers, and have developed ways to cover large wounds with skin and reduce the risk of infection. • Although success rates have improved over the years, surgical separation is still rare.

23. To separate or not… • Is surgery viable? • Doctors conduct tests such as an ultrasound, MRI (magnetic resonance imaging) and 3D graphics to determine • The location and extent of the join • and whether internal organs are involved • The medical team and their experience is also a factor

24. To separate or not… • Is surgery viable? (cont) • If surgery is safe, the effects to both twins must be taken into factor. • Are both twins equally robust? • What are the chances of one or both surviving surgery? • What quality of life is likely for one or both twins after surgery? • How does this compare with the probable quality of life if the twins remain joined?

25. To separate or not… • Ethical Questions: • Is it right to sacrifice one twin to save the other? • Is it reasonable to invest scarce resources in uncertain operations?

26. To separate or not… • Religious considerations • Parents knowing that one twin will die as a result of the surgery will object on religious grounds, in which case, a judge may overrule the parents decision • Parents who know that both twins have an equal chance at survival will agree to the surgery and declare that the outcome was a will of God.

27. To separate or not… • Cultural Influences: • Where they live • Conjoined twins in Soviet Russia were treated as outcasts • If left unseparated in Africa they could be seen as outcasts and curiosities • Attitudes towards disability • Some parents can’t stand seeing disability in their children and do the surgery to avoid it even if it means they could lose one • Some parents believe that their children are better off and more able bodied when they are stuck together than when they are apart

28. To separate or not… • What do twins think about being separated? • Some are content and have adjusted to the psychological and physiological aspects of life conjoined • A set of twins separated at age twenty-nine were very determined to be separated • Ones separated at infancy have no recollection of being conjoined, may actually be glad to have independent lives

29. Cases of Conjoined twins • Masha and Dasha Krivoshlyapova • Born in 1950 in Moscow • Taken way from mother at birth • They had a third leg that was amputated at age 10 • They were incarcerated until age 40 in Soviet institutions that were degrading • They were tested for responses with pins and razors • They are now both alcoholics and shunned by the society they live in

30. Cases of Conjoined twins • Lori and Reba Schappell • Born in 1961 in Pennsylvania • The only pair of unseparated twins alive today that are joined at the head • Reba is shorter and must sit on a wheeled stool • They don’t want to be separated • They were institutionalized when they were children

31. Cases of Conjoined twins • Anna and Barbara Rozycki • Born in 1970 in the United Kingdom • Joined at the breastbone and liver • Mother almost died during birth and the twins were separated immediately so the mother never saw them as one • Neither one has a physical disability

32. Cases of Conjoined twins • Laleh and Laden Bijani • Born January 17, 1974 in Firouzabad, Iran • Joined at the head • Separated in July 2003 • They had a 50:50 chance of survival • Laden died an hour after separation • Laleh died 90 minutes after Laden

33. Cases of Conjoined twins • Elisa and Lisa Hansen • Born in 1978 in the United States • First successful brain separation • The separation occurred when they were 19 months old • Lisa has significant brain damage and has to use a wheelchair • Both are now doing fine and live near Salt Lake City, Utah

34. Cases of Conjoined twins • Abigail and Brittany Hensel • Born in 1990 in the Midwest of the United States • Parents are opposed to separation because it would cause severe disabilities and the girls would have to give up their favorite activities

35. Cases of Conjoined twins • Amy and Angela Lakeberg • Born in 1993 in the city of Chicago • Had a joined heart and liver • Amy died during separation • Angela died 10 months later of pneumonia • Their case raised some of the many issues involved in separation of conjoined twins

36. Cases of Conjoined twins • Esther and Stella Alponce • Born in 1999 in Tanzania • Joined at the spine • They were separated in Cape Town • There was risk of paralysis in one or both of the girls • They both were able to move their legs within hours of operation • They returned to their village 11 months after the operation • Both were happy, healthy and learning to walk

37. Cases of Conjoined twins • Gracie ‘Jodie’ and Rosie ‘Mary’ Attard • Born in 2000 in Manchester UK • Joined at the lower abdomen and spine • If left unseparated both would have died • Parents opposed separation because of their Roman Catholic religion – court opposed • Rosie died • Gracie has made good progress and should lead a normal life

38. Cases of Conjoined twins • Manar Maged • Born in March 2004 in Aghur, Egypt • The underdeveloped twin had a brain but no body • A 13 hour surgery was performed • The family named the twin that didn’t survive Islaam • Manar died in March 2006, of a severe brain infection 13 months following surgery

39. Cases of Conjoined twins • Abigail and Isabelle Carlson • Separated in Summer of 2006 • From North Dakota • Separated at the Mayo Clinic in Rochester, MN • http://www.youtube.com/watch?v=r08wJnNmUz0

40. Questions?