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Conjoined Twins and Parents of Conjoined Twins Share Experiences

Aired October 4, 2002 - 21:00   ET


LARRY KING, CNN HOST: Tonight, exclusive: conjoined twins together for life, joined at the head for more than 40 years. Lori and Reba Schappell say separation is not an option. They invite us inside their home and share an incredible story.
Plus, meet Kathleen and Charity Lincoln, born conjoined, separated in a delicate operation. Their parents will tell how their girls are doing, two years after surgery, and how faith keeps the family going.

And Lexi and Sydney Stark, born conjoined, too, separated a year ago. Their proud parents share a compelling story, too.

That and more next on LARRY KING LIVE.

We have an extraordinary show, we think, in store for you tonight. The old axiom is never work with kids. We're going to be working with six of them tonight, and hope I get a word in.

Anyway, the subject is, of course, it's commonly called Siamese twins. That may be an incorrect term.

Dr. Henry Kawamoto, the director of cranial/facial surgery at UCLA, who was part of the team that conjoined those twins -- that were conjoined from Guatemala, he helped separate them.

Also here in Los Angeles, are Greg and Vaneice Lincoln with their, children Kathleen Faith and Charity Mae; and in Denver Colorado, Jim and Emily Stark with their twins, Lexi and Sydney.

These are all four girls. By the way, they're very close in age. Kathleen Faith and Charity Mae were born February 21, 2000, and along came Jim and Emily Stark's children, born March 9, 2001. Truly a day for me. That's when my 3-year-old was also born, on March 9.

So we welcome them all.

First, doctor, before we start with the parents and children, is Siamese twins a bad term?

DR. HENRY KAWAMOTO, SURGEON, UCLA: It's not a great term, but it was popularized because the first twins that were well known were from Thailand. The preferred term, I think is conjoined twins. There are the...

KING: And are they historically as old as time? KAWAMOTO; Yes, they're historically as old as time.

KING: And what made the Siamese twins from Thailand so famous?

KAWAMOTO: I think they were shown more. They were sort of in show business and they were attached in an area that made it possible for them to get along.

KING: They were at the hip?

KAWAMOTO: They were at the hip, yes.

KING: Could you be attached anywhere in this phenomenon?


KING: OK, yes. Let's start with the parents and we'll keep calling on Dr. Kawamoto throughout the show for his expertise.

Greg and Vaneice, you have other children? Greg.


KING: Are they older than these two girls?

G. LINCOLN: Yes, they are.

KING: Did you know they were coming?

G. LINCOLN: Yes, we did. We knew pretty much immediately, about six weeks along or eight weeks along that she was pregnant.

KING: Vaneice, why did you choose to have them?

VANEICE LINCOLN, PARENT OF CONJOINED TWINS: Well, they were our children and we loved them and we wanted to give them every chance we could, and so we had - obviously, we had to give them the chance to be born before we could continue and try to give them other chances.

KING: And did you know before they were born that you were going to take some risks and try to separate?

V. LINCOLN: We hoped that we would. We felt strongly that if it would be detrimental to one or both of the girls to separate them, then we would leave them together.

KING: Do you know -- Have you been told, Greg, why they were conjoined?


KING: Do you know why the other children were not? Why these two were?

G. LINCOLN: No. As far as I know there's no medical explanation for it, and that's one of the hard things about going through a situation like this. Because you always ask yourself, "Why?"

KING: "Did I do something?"


KING: Doctor, is there...?

KAWAMOTO: No, not that we know. It's not the position of the moon or stars that evening. It just happens.

KING: And it can happen in any ethnic group, any country, anywhere?

KAWAMOTO: Yes, absolutely.

KING: So it's not phenomenal to Asian nations or Eastern nations or et cetera?

KAWAMOTO: No, not at all. Not at all. It's found throughout the world.

KING: Is it found in the animal kingdom?

KAWAMOTO: Yes. Yes, it has been found the animal kingdom.

KING: Was some of the research done on animals enabling you to perfect the way you do operations?

KAWAMOTO: Actually, probably some of the techniques that were used...

KING: You had to try it somewhere.

KAWAMOTO: You had to try it someplace. But a lot of the techniques that were used in separating at least our twins were pretty well established beforehand.

KING: Jim and Emily, did you know before birth that your beautiful twins there, Lexi and Sydney, would be conjoined, Jim?

JIM STARK, PARENT OF CONJOINED TWINS: Yes, we did. We found out at about four months, I think it was, and then they were born about four months after that. So we found out pretty early on, as well.

KING: And Emily, I asked Vaneice, why did you have them?

EMILY STARK, PARENT OF CONJOINED TWINS: Well, on the day we saw them in my stomach. We did an MRI, and we put both babies to sleep. And I think from the moment we saw them, as one was sucking her thumb and the other one was waving at us, we knew we had no choice but to go forward and keep moving on.

KING: Jim, are these your only children?

J. STARK: They are. They are our first two. We really don't know anything different besides... E. STARK: Doesn't everybody get conjoined twins?


J. STARK: That's right.

KING: And when -- when, Jim, were these two lovely girls taken -- what do you call it when you un-conjoin them.

G. LINCOLN: Separation.

KING: That's the word. Conjoined I know, separated I don't know. When were they were separated?

G. LINCOLN: They were separated exactly seven...

J. STARK: They were separated October 9.

KING: Yes, I asked Jim. Seven months old, they were separated.

J. STARK: Correct.

KING: And yours, Greg, were how old?

G. LINCOLN: Seven months.

KING: The Guatemalan children were how old, doctor?

KAWAMOTO: A few days after a year of age.

KING: You would not do it in total infancy?

KAWAMOTO: I think it would depend upon where they are joined and the amount of blood loss that one would face, and also quality of life type of issues.

KING: Where, Vaneice, were your children joined?

V. LINCOLN: They were joined from the bottom of the ribs through their pelvis.

KING: So they were, like...

V. LINCOLN: Kind of at the side and they shared a third leg. They each had their own leg and then they shared a leg.

KING: And yours, Jim and Emily, were joined where?

E. STARK: They were joined at the base of the spine, and their spine went into a "u." So we always joked that instead of having a pair of buns they had a sister instead.

KING: How long did the surgery take, Greg?

G. LINCOLN: Thirty-two and a half hours.

KING: You were there all the time?

G. LINCOLN: Yes, we were.

KING: It was done where?

G. LINCOLN: At Children's Hospital in Seattle.

KING: I see. Did -- what were the risks?

G. LINCOLN: Well, I think the risks associated with it would be common to any surgery: infection, too much blood loss.

KING: Isn't there a chance, Vaneice, that one will live and one will die when you do this?

V. LINCOLN: There is, but the manner in which our girls were joined, we weren't compromising one over the other.

KING: There was never a fear that you'd lose one?


KING: So your fear was infection?

V. LINCOLN: Right. Would the sutures close and all of that sort of thing.

KING: Jim and Emily, how long was the surgery of Lexi and Sydney?

J. STARK: Ours was relatively a short 16 hours.

KING: Did you have fear of the possibility, Emily, of losing one?

E. STARK: I think any mother has a fear of losing a child when they go in for a surgery, but I had more faith in our doctors and I trusted them, obviously, with my girls' lives; and I knew they were going to come out and just do fine through the whole surgery.

KING: After the surgery, Jim, were there tough times or did they sail through, post-operatively?

J. STARK: You know, they seemed to sail right through. We were -- Our biggest fear, you know, obviously, besides survival, which can be a problem in any operation, was that they'd be paralyzed.

And they let them out of their sedation and both arms and legs were moving on both kids and then they just went pretty quickly after that. They were out of the hospital in eight days, I think. So our recovery was really quick.

KING: And Greg, how did yours go?

G. LINCOLN: Very well. Very well. Charity had a minor complication in that her skin was stretched so tightly after the separation and the attempt to closure that they actually, the sutures broke apart and the flesh, you know, came open and they had to take her back into surgery and re-stitch her up.

But besides that, they did excellent.

KING: And no infections?


KING: And are they now, in your case, normal 2-year-olds? Is there anything different about them from other 2-year-old children?

V. LINCOLN: Well, obviously they each only have one leg, but there are other 2-year-olds that, under different circumstances, that only have one leg. And other than that, they function very much as just normal, typical 2-year-olds.

KING: And yours, Jim and Emily?

E. STARK: Ours show no sign of any after effect of the whole journey that we've been on. They're just walking, talking, doing what a normal child should do.

KING: When we come back we'll have more, and I'll ask the doctor what happens during the surgery, what is the tough part of it when we separate, and are there parts where you can't separate?

Later we're going to meet Lori and Reba Schappell. They have been attached at the head for over 41 years.

We'll be right back.


UNIDENTIFIED FEMALE: Dr. McDuffy must make an unusually large incision in order to remove the joined babies. For every medical professional in the delivery room...

UNIDENTIFIED MALE: Let's get all the feet.

UNIDENTIFIED FEMALE: ... this is a first.

UNIDENTIFIED MALE: They're here and they're making some noise like they want to breathe.

UNIDENTIFIED FEMALE: And then Alexandra and Sydney Stark arrived.


UNIDENTIFIED FEMALE: Each weighs about four pounds.

UNIDENTIFIED MALE: Look at her little hand. You see that?

UNIDENTIFIED FEMALE: Emily has just one chance to touch her babies before they are rushed to intensive care. (COMMERCIAL BREAK)

KING: We're back with our discussion of conjoined twins who are separated and have been separated successfully, surgically.

Now just so we understand the leg situation. Vaneice, your children each have one leg, right?

V. LINCOLN: Yes, they do.

KING: They walk with a walker, right?

V. LINCOLN: They do.

KING: Can they some day get artificial limbs?

V. LINCOLN: It is possible for them to be fitted with a prosthesis, however, with no leg of any kind to attach it to, they have to attach it with kind of a bucket around the abdomen, and it's a little less functional. It's more work. So it's kind of a personal preference. Some people just do very well and like it. And other people just choose to use crutches or walkers.

KING: Think it will work some day, doctor?

KAWAMOTO: Can they? I mean, they've made a lot of progress in that area. And hopefully, yes, maybe in the future.

KING: What's the most difficult aspect of the surgery? And by the way, how are the Guatemalan kids doing?

KAWAMOTO: The Guatemalan kids are doing OK. One of them recently said "papa" for the first time.

KING: Is the brain the hardest part, when they're separated at the head?

KAWAMOTO: Yes. And the thing that is the rate-limiting step, so to speak, is for blood supply. How does the blood come into the brain and how is it drained out of the brain?

And fortunately in our set of twins, there was sufficient separation and run-off that the neurosurgeons could do the separation.

KING: And your role as a cranial-facial surgeon was what?

KAWAMOTO: Well, what the plastic surgeon has to do is, once you have the separation performed, there's a raw brain there that has to be covered over. And actually, one of the analogies I've used is you take an orange, and you cut it in half, where do you find the orange peel to cover the cut half, to cover the rest of it?

And that's essentially our task.

KING: Where did you find it? KAWAMOTO: Well, we cheated a little bit, but we put in little, what we call an expander. It's like a balloon, and it stretches out the scalp. We had planned to put two in, but one of them failed. And that made the story a little bit more interesting for us. But we were able to recruit it cover the brain.

KING: What was the key thing, Vaneice, in their surgery? The key obstacle, if that's the correct word?

V. LINCOLN: Well, there were -- they involved quite a number of organs in their situation. They had to do large intestine, small intestine, bladder, pelvis...

G. LINCOLN: Liver.

V. LINCOLN: Liver. So there were a number of things. One of the things that they were always unsure of was whether they would have adequate intestines. That was one thing we had to wait until the day of surgery to know for certain. So...

KING: And they do?

V. LINCOLN: And they do.

KING: They eat all the normal things?

V. LINCOLN: They eat just like normal.

KING: They have normal waste, too? They go to the bathroom normally?


KING: OK. What was the, if anything, touch-and-go in the Stark situation, Jim?

J. STARK: I think our biggest fear was their spinal cord and their spinal column were conjoined and attached. So I think when we got down to it, you know, separating that part out and what nerves went to which girl, were there any crossovers? Was, you know, Sydney's spine controlling Lexi's legs or vice versa? I think that was our big one.

And then they also had their lower intestines were also conjoined. So separating that out and giving both of the girls -- Sydney was born with a, was it an imperforated anus? Where she actually couldn't eliminate waste. So she had to have a colostomy when she was born.

KING: Are they very much alike?

E. STARK: Oh, no.


KING: They're not? E. STARK: Oh, no. They definitely have distinct personalities between the two of them. I have a bossy one, and I have a mellow one. So, you know, you go with the flow.

KING: And what about yours, Lincolns? Are they alike?

G. LINCOLN: They're different.

KING: Do they get along?

G. LINCOLN: Yes, they get along very well, and I like to joke and say they get along as long as they don't want the same toy.


G. LINCOLN: But -- but I say that they do get along very well.

KING: Do they have any difficulty when they're around other children who have two legs, that you've noticed?

V. LINCOLN: So far, I haven't noticed any issues with that. You know, they have three older siblings, so they're pretty used to being around other kids and used to, you know, the differences. So far I haven't noticed any problems.


KING: They're just like musical chimes.


KING: This is really funny. They're in unison here. They have the same DNA, right?


KING: All identical twins do, I guess.

KAWAMOTO: Yes, yes.

KING: How common is this surgery, doctor?

KAWAMOTO: For those joined at the head, it's very rare. Of course, those that are joined at the head only comprise about two percent of all conjoined twins. And from what I've read or the things we've been able to collect, there's only about 30 attempts at separating twins joined at the head in the last, almost 80 years.

KING: How many conjoined babies are there?

KAWAMOTO: The statistics I've seen were drawn from the -- a study in the early '70s, in which they studied almost 8,000 births, and at that time, there was one in every 100,000 births.

But of those -- of those that occurred, I believe 40 percent were stillborn, 35 percent didn't live the first day, and only 4 percent left the hospital. So although there are many born...

KING: They don't survive.

KAWAMOTO: ... they don't normally survive.

KING: And of those that are separated, is it usual that both live?

KAWAMOTO: It depends upon where they are attached. And what they share. If you could divide it in two and separate that they have sufficient organs, for themselves, they'll be fine; but no, there are problems where they may have one heart. Then what do you do? It becomes a real dilemma.

KING: We'll take a break. When we come back, we'll ask both parents what it was like when the children were born and how they dealt with those first months before the surgery.

And then later we'll be meeting Lori and Reba Schappell, who, as we told you earlier, have been conjoined at the head for over 41 years.

We'll be right back.


UNIDENTIFIED FEMALE: It took more than 31 hours for doctors at Children's Hospital to separate Charity and Kathleen Lincoln. The 7- month-old twins from Olympia were born joined from the breastbone to the pelvis.

According to other doctors, there was a calmness in the room while 14 surgeons took their turn operating. Doctors used the bone and tissue from the leg the twins shared to create a pelvis for each girl.

For the first time, Charity and Kathleen are in separate cribs in the same room.



KING: Dr. Kawamoto just told me a funny thing. The twins who were joined at the head, the Guatemalan twins who were separated, he has to have them checked to see - to touch where they had their...

KAWAMOTO: They had a dressing on, and I asked the intensive care nurse, did they play with their dressing. And she said, "No, but one of them goes like this" (touches the top of his head) "wondering where the twin is."

KING: Looking for them.

KAWAMOTO: Exactly.

KING: Did you have that with yours?

V. LINCOLN: No. I -- We didn't really notice any of that after the surgery, although there was a day when Kathleen -- Charity had a little bit heavier sedation, longer. There was a day when Kathleen didn't want anybody to go near Charity. Any time a nurse or doctor would approach her, she would just start crying. And just really get upset.

KING: Jim and Emily, did you notice anything between Lexi and Sydney after the separation, where they kind of missed each other?

J. STARK: We thought we did. We thought they would reach over and try to feel for their sister. And they just kept reaching over to where she was, depending on which kid it was. We thought there was a little bit of, you know, loss there, separation anxiety, if you will.

KING: What were those first months like, Greg, when they were joined?

G. LINCOLN: When they were joined?

KING: Yes.

G. LINCOLN: Emotionally, it was very difficult. Very devastating. Hard to deal with. Thinking about, you know, your children, the state that they are in, kind of, in some ways, a socially unaccepted position, being conjoined. Thinking about the possible surgery and all that they would need to go through. Wondering why this has happened to me was very difficult for me. Just very hard to see my children like that.

KING: What was the Cesarean like, Vaneice?

V. LINCOLN: The Cesarean went very well. It was just a fairly standard birth in that.

KING: Were you present, Greg?

G. LINCOLN: Yes, I was.

KING: After they come out and you take them home, you're thinking about the surgery. Neighbors come over, their older siblings. How were they treated? I mean, we don't see this every day.

V. LINCOLN: No. And we were very private at first. We were very limited on where we would go and take the girls, and you know, having people over and things like that. But they were treated very well by everyone within our circle of family and friends and church family and...

KING: Tough to get used to, right?

G. LINCOLN: Yes. Yes.

KING: I mean, there is a social aspect to it, sadly, there is.

G. LINCOLN. Right. Right.

KING: What about you, Jim and Emily? Emily, what was it like, early on?

E. STARK: You know, I enjoyed when they were conjoined, when they came out. It made life easy for me. I had just like a double- wide singleton. So life was easy. And I had one diaper. I knew what to expect when I changed it.

And how often can you really say that you're holding both your daughters with one hand and have a free one to make the bottles or do something else? So I thoroughly enjoyed having them conjoined and often miss it now.

KING: Really?

E. STARK: I do. I do. I have a picture in my bathroom to make sure that my memory stays sharp on how they were conjoined.

KING: Jim, what about you?

J. STARK: I agree. I think that -- How often can a father hold both of his babies and have all four eyes looking at him? It was just very special to me, and then -- I mean, my grandmother made an interesting comment. She said that God must think you're very special for you to be trusted with this. And I -- that's the way we looked at it. We didn't really dwell on the "why us" or the -- anything like that. We had one thing in mind, and that was keeping our girls healthy and getting them to separation.

KING: Where was your surgery performed, Jim?

J. STARK: Children's Hospital in Denver.

KING: Right there in Denver?

J. STARK: Yes, right here.

KING: That decision, was it difficult to make?

E. STARK: No, it really wasn't difficult to make, because we decided that way back when we did the MRI, 4 1/2 months into the pregnancy. And we had asked the neurosurgeon, "Give us worst case scenario and best case scenario when we do separate them." And we could live with best and worst case scenarios.

So, we were pretty set that separation was going to happen and the doctors did a wonderful job of planning and then they did a dry run with dolls and your trust level with them is just amazing.

KING: What was the birth like?

E. STARK: Do you want to see the scar?

(LAUGHTER) No. Actually, it was actually brought forward a month because I started to bleed, and the Cesarean went pretty well. I was on drugs and James was just screaming in joy.

KING: That's a different attitude than you had, right?

G. LINCOLN: Yes. It was - I mean, honestly, it was hard for me to see my girls like that. I didn't feel that -- while I felt that God made my children and created them, I didn't feel that that was his perfect will for them to be conjoined. I felt that was a result of, you know, whatever, you know, an environment, disease, whatever it is that comes in and affects cells where they don't properly divide. And so, I mean, you know, real honestly, it was very hard for me.

KING: And you, Vaneice?

V. LINCOLN: Yes, it was very difficult. It was never hard to love the girls. I mean, we loved them just as much as any of our other kids and we just adored them. And so did their brother and sisters.

But it was a challenge. I mean everything was totally different. You have to learn to deal with people's kind of double-takes and look and try to see your different situation. And when somebody asked about the babies or, I think, somebody called up talking to Greg pretty soon after they were born and asked the typical question, "10 fingers and 10 toes?" And, well, that's kind of a hard thing when you have babies in special circumstances and there aren't, you know, 10 toes on each baby. So it was hard.

KING: Did you question your faith?

V. LINCOLN: We did. We did.

KING: See someone?

V. LINCOLN: We had -- we didn't actually see, like, a therapist, but we did have social workers that met with us when I was pregnant and then, like, a doctor that was -- dealt with the ethics of everything. And it was good to talk through things.

KING: Kathleen Faith is out.

V. LINCOLN: She's had a long day.

KING: Meanwhile, Charity Mae continues on.

Your kids are rather lively, are they not, Jim and Emily?

J. STARK: Ever since they became mobile, they don't want to sit still.

E. STARK: We don't sit still.

KING: The plan was for your children to be on the lap, too, and that did not work. E. STARK: No. Not at all.

J. STARK: The first 15 or 20 seconds and that was it.

KING: You said you didn't have any -- Did you question your faith at all, Emily at all? Do you have faith?

E. STARK: I definitely have faith, and I think through an experience like this and a journey like this, it just grows stronger and stronger. When you have so many people praying for you, praying for the success of your babies and praying for these miracles, you know, it definitely brings you closer to God, and I definitely think it has.

KING: Yes. I thank you all very much: Jim and Emily Stark, and your children Lexi and Sydney; and Greg and Vaneice Lincoln and their children, Kathleen Faith and Charity Mae. And Kathleen Faith has gone totally out of it. She sleeps well.

And Dr. Kawamoto will remain with us as we meet Lori and Reba Schappell, joined at the head for over 41 years. Don't go away.


KING: Just to get you up to speed here on this very important, fascinating program, experts say 60 percent of conjoined twins are stillborn. Of those who survive birth, 35 percent live only one day.

Only about 4 percent of conjoined twins are born like the Schappells, who we'll now meet. They are connected at the head. Nearly three-quarters are joined at the chest. The rest is the abdomen or pelvis.

The Lori and Reba Schappell come to us from Reading, Pennsylvania. They were born in September of 1961. They have distinct brains, but are joined at the left side of their skulls. They share bone, blood vessels and tissue near the brains.

Dr. Kawamoto, from looking at this, would this surgery have been possible 41 years ago?

KAWAMOTO: It depends upon the blood vessel arrangement that they have. And it's hard to say, just looking at somebody, whether that's possible. But right now, of course, we have all the fancy imaging things that could certainly tell us.

KING: The fact they have distinct brains, does that make a difference?

KAWAMOTO: Yes, it does make a distinct difference, yes.

KING: Could they have surgery now?

KAWAMOTO: They could if they wanted to, but I think, after 41 years, you have to ask them.

KING: Lori, would you like to be separated?

LORI SCHAPPELL, CONJOINED TWIN: No. No, we're fine just the way we are. There is never a 100 percent guarantee, and we wouldn't risk that at all.

KING: Explain, Lori, why Reba will speak very little, that you will do the majority of the talking.

L. SCHAPPELL: Because Reba is a country singer. She sings country and that's her career. She is not - her whole life is not conjoined twins. That's just an integral part of our lives.

KING: Does she sing - has she sung professionally?

L. SCHAPPELL: Yes, definitely.

KING: And you can't sing, I gather, right, Lori?

L. SCHAPPELL: I sing only in the shower, away, where nobody can hear me.

KING: All right. What is it like for you, Lori? What is life like in this stage? You see everybody else who is different. What's it like?

L. SCHAPPELL: Well, we've grown so used to it, it's like nothing really to us. We don't really - I mean we notice people staring and stuff, but that doesn't really affect us or have anything. You don't really - it doesn't bother us at all...

KING: Not at all?

L. SCHAPPELL: ... because we're used to it. No, no, because we're used to it. And that's - to us, that's their problem.

KING: OK. Let's discuss some things about life.


KING: Reba has Spina Bifida, right?


KING: She's four inches shorter than you?


KING: And she uses a walker, a specially adapted walker, right?

L. SCHAPPELL: It's just a stool, yes.

KING: OK. Now, if she has Spina Bifida, what happens when she gets sick? How does that affect you?

L. SCHAPPELL: Well, really, we don't really get sick together that often, and we really aren't - we don't really get sick at all much. We just get the normal things everybody else does, colds, you know, here and there. That's about it.

KING: Do you live with people who take care of you?

L. SCHAPPELL: No. We're all by ourselves.

KING: What was it like for your parents, as you remember, growing up?

L. SCHAPPELL: Well, you know, I think they did pretty well. I mean they coped with everything very well. We're a very religious family, very religious.

KING: How many in the family?

L. SCHAPPELL: Well, there are eight of us kids.

KING: Eight!

L. SCHAPPELL: Eight of us kids, yes. There are eight kids.

KING: Do you never say to yourself, why me? Why us?

L. SCHAPPELL: Absolutely not. This is what God made, and he had a reason to do this, and whatever it is, we are fine with it.

KING: All right. What about things in life? Do either of you have boyfriends?

L. SCHAPPELL: I've had boyfriends in the past. Reba really isn't into all that stuff.

KING: All right, when you have - when you are going with a boy or seeing a boy, how does that work? Do the three of you go to a movie together? Can you go to a movie?

L. SCHAPPELL: When we're out - when I - when a boy and I are - I wouldn't say a boy anymore, a man because I'm pretty - an adult. But when we go out, Reba really doesn't have anything to do with it. She's there, but she's just there physically, and that's it. And we really - she doesn't make - she doesn't do anything. She's very quiet, and she maybe has a book with her. She'll read it or maybe she's doing something. Maybe she has some work to do, having to do with her singing, and maybe she has to do some, you know - so she brings something along. Or else if she doesn't have anything and doesn't want to do anything, she just sits there.

KING: It's not our business, Lori, but can you be intimate with someone?

L. SCHAPPELL: When the time comes, yes, I can.

KING: You can. And Reba is totally removed from it? I mean you don't have a feeling of a lack of privacy?

L. SCHAPPELL: No, no, no. Because she's not there talking, and she's not interested in anything that I am doing at that time. That's my business and not hers.

KING: Doctor, how do you explain this, what seems to us who don't have this malady, if it can be called this, that attitude?

KAWAMOTO: Two different brains, two different individuals.

L. SCHAPPELL: That's right, totally.

KING: Ah. We are dealing with two different brains here.

KAWAMOTO: Absolutely.

KING: Had they been joined at the brain, what would we have had? Maybe they wouldn't have lived.

KAWAMOTO: They may not have lived, yes. But you're dealing with two different persons, just joined at one area.

KING: They are not identical twins, are they? Are you identical twins?

L. SCHAPPELL: Everybody says we look alike, but I can't see it, and a lot of other people can't see it either.

KING: Would they have the same DNA, Doctor?



KING: And no one else in the family - do you know anybody else who is conjoined?

L. SCHAPPELL: Not in my family, no.

KING: Do you know other people who are conjoined?

L. SCHAPPELL: Oh, of course. We've met people, yes.

KING: And the attitudes pretty much - what do you think of what you first heard in the part of this show where the people were separated, those four girls?

L. SCHAPPELL: Well, I always say that - you know, I let that - that's up to the parents and how they want to do that. But if it comes to - and I have any children that are conjoined, I will not separate them until they are old enough, you know. You can separate children up to, I think, about - I don't know if it's changed, but it used to be until about 5. The bones are still brittle enough and the skull is still soft enough, and I would wait until they at least knew better and wanted to tell me whether they wanted to be separated or not.

KING: Let me get a break, and we'll be back with more with Dr. Henry Kawamoto and Lori and Reba Schappell. Before the program is over, I want to ask Dr. Kawamoto how he chose this unique specialty. Don't go away.


KING: Lori Schappell, what was it like for you as children, when you were 7 and 8 and 9. Did you go to regular school?


KING: How did the other kids treat you?

L. SCHAPPELL: Kids will be kids, you know. There were kids that were mean, and then there were kids that were nice. We had - I had friends. And then there were kids that looked and stared and pointed. But I always chalked that up to kids will be kids. And our parents always told us, you know, that they were going to do that.

KING: All right. When you walk - explain how you do things like walk around.

L. SCHAPPELL: Well, I just mostly just walk. The stool goes everywhere I go. So it's - it's on wheels, so it's easy to go, and I just do everything the same as everybody else, except for I have someone that's just...

KING: With you.

L. SCHAPPELL: Attached to me at one integral, little part of my body.

KING: How did you sleep?

L. SCHAPPELL: Same way. I mean I sleep - we just sleep normally. We, you know - she lays on her side most of the time, but me, I change positions all through the night.

KING: Are you envious of those different from you?

L. SCHAPPELL: Absolutely not. No. This is - I always say this is the way God made me, and he had a purpose, and I have no objections or...

KING: Has Reba started to sing on stage?

L. SCHAPPELL: Yes, she has.

KING: And in like do a concert somewhere or...


KING: ... work for a charitable group?

L. SCHAPPELL: No, just regular concerts, you know.

KING: Reba, do you want to say anything?


KING: You like singing country, right, Reba?


KING: Do you agree with everything Lori has said so far?

R. SCHAPPELL: She's done very well.

KING: I guess you are very - do you two - hey, Lori, you have arguments?

L. SCHAPPELL: I think just like everybody, of course, Definitely.

KING: OK. And you have separate brains, so you think alike - I think you'd think totally differently.

L. SCHAPPELL: Oh, yes. We're totally different.

KING: What could be square to you could be round to her.

L. SCHAPPELL: What's that?

KING: What could be square to you could be round her, right?

L. SCHAPPELL: Absolutely, yes.

KING: OK. Now, when other people fight, they say, I'm going out the door.

L. SCHAPPELL: That's true.

KING: Give me some space. You can't say that.

L. SCHAPPELL: Well, no, we can't go out - one can't go out the door, but we do have - Reba is very good. She can block me totally off and totally ignore me.

KING: Not speak. Oh, I know that type.

L. SCHAPPELL: I'm not good at that, but she is.

KING: So, in other words, she can just shut up?

L. SCHAPPELL: Yes. She can just totally ignore me.

KING: Do you like different foods?

L. SCHAPPELL: We're different in every way imaginable. Yes, Reba is a very health conscious, and me, I just eat about just anything, just about anything.

KING: Who does the cooking?


KING: Do you go out to eat?

L. SCHAPPELL: Definitely.

KING: All right. Is that difficult? I mean, do you - have you gotten totally used to walking into a restaurant and people staring?

L. SCHAPPELL: Yes, definitely. I have just as much of a right in that restaurant as they do, and if anybody has a problem, they leave, not me.

KING: I think, Doctor, we have girls here with a pretty good attitude.

KAWAMOTO: Absolutely.

KING: So they must have been raised very well.


L. SCHAPPELL: Absolutely.

KING: Reba has performed in Atlantic City, in Japan and Germany, got an L.A. Music Award for best new country artist of the year, has a signature song called "The Fear of Being Alone."

When Reba is singing on stage, what are you doing?

L. SCHAPPELL: I'm just up there doing - I guess, you know how they do dancing and whatever, doing whatever the fans are doing. I'm just mainly there. I'm a fan except for one little difference is I'm up on the stage with her, but I don't do anything but what the fans are doing.

KING: Do you wear special outfits?

L. SCHAPPELL: Not me. I don't. I dress just like I feel. I mean I wear my jeans and my shirts or whatever I feel like wearing that day. But she always does, yes.

KING: So when Reba is booked, she's booked as a single?

L. SCHAPPELL: Oh, definitely, yes. She's not booked as a conjoined twin.

KING: Right. The audience is going to see Reba Schappell, and you just happen to be there?

L. SCHAPPELL: Right. That's right.

KING: What do you do, Lori, for a living?

L. SCHAPPELL: Right now I do nothing because I chose that. Reba is doing pretty good right now, and I don't want to stifle any of that. KING: Before that, did you work?

L. SCHAPPELL: Yes, I did. I worked in a hospital. And I also worked in the colleges that I was going to as a student aide.

KING: So you would go - the two of you would go to the hospital every day and you'd do work and Reba didn't work?

L. SCHAPPELL: No, she didn't, only I did.

KING: We're going to get a break. We'll be back with our remaining moments. And I want to ask the doctor a couple of questions as well. Don't go away.


R. SCHAPPELL: I thought you all would like to see an award that I've won. It was the L.A. Music Awards. And it meant a lot, and that's my first award for a new and upcoming country singer, and this is so great. That means, you know, my fans, they love the music, and that's what makes it all worthwhile, the fans. They make you what you are.



KING: By the way, the doctor tells me the Siamese twins, who made all of this famous, I guess, had 20 kids between them, right?

KAWAMOTO: Roughly. I don't know the exact number, but yes, they had them.

KING: And what about death, if one of the parties dies?

KAWAMOTO: It's difficult because that part of the body is...

KING: Shuts off the other part.

KAWAMOTO: It shuts off the other part, too, yes.

KING: Reba, are you very religious?

R. SCHAPPELL: Absolutely.

KING: So you've lost none of your faith through all of this?

R. SCHAPPELL: Absolutely not.

KING: How do you pick your songs, Reba?

R. SCHAPPELL: I go into the studio. If I like the songs that are written, I pick them. And if my managers or my agents like them, we record them.

KING: Would you say, Reba, that you're a happy girl? R. SCHAPPELL: Yes.

KING: Do you share your sister's belief that you don't feel less fortunate than others?

R. SCHAPPELL: Absolutely. There's no less fortunate here.

KING: Are we approaching the time when almost anything can be done now? Cleft palate cured?

KAWAMOTO: It's not cured, but we certainly can reconstruct them quite well, to a point where we'd hope it would take a double-take before you would know.

KING: Is there a lot of new technology?

KAWAMOTO: There's a lot of new technology around, a lot of things that are very exciting in the future. So hopefully, yes, in the future we'll be able to eliminate some of these things.

KING: Were the Guatemalan kids the toughest job you've had?

KAWAMOTO: They were the toughest in planning, but we had a terrific team, just a terrific team. And the planning was the hardest part. The technical part of the operation was not difficult, but the planning was horrendous.

KING: Wow. That's interesting, technical, not difficult.

KAWAMOTO: Yes, right.

KING: When you look at Lori and Reba...


KING: ... the kind of person you are, do you say, I'd like to -- I'd like to separate them? I mean as a - just as a physical challenge?

KAWAMOTO: No, not really. I really respect their own thoughts about themselves, and I don't like to impose my own thoughts on them. And I think they are perfectly happy, why not?

KING: Back to the original, Lori. Why would you not want to be separate?

L. SCHAPPELL: Why would I not want to be separated? Just back to the same thing. God made us this way, Larry. And who are we to second-guess him? He was the creator, and why should we do anything that would, you know, second-guess his decisions and his abilities?

And besides, we could be very - one could be a vegetable, one could - one or both could be vegetables, and one or both could be brain dead and, you know. Why mess with this? We are wonderful. We are healthy. We both have great lives and great family and great support. We don't need to be separated to prove something to somebody out there.

KING: So, Reba, if a doctor told you, I could do - I could separate you tomorrow and none of these things would happen, no vegetable, no - you would have a normal life, you wouldn't do it?

R. SCHAPPELL: Absolutely not, because there isn't anything like that.

KING: In other words, there's no guarantee?

R. SCHAPPELL: There's no guarantee.

L. SCHAPPELL: There's no -- you cannot give me 100 percent.

R. SCHAPPELL: There's a lot more equipment out there, but there's still no guarantee.

KING: Ah, yes, I can understand that. So you two have what you would call, from your standpoint of growing up with this, you have adapted yourselves into what are normal lives, right?

L. SCHAPPELL: I don't consider us anything but normal. I mean, what is normal? There is no real normal. I mean, even people who are not conjoined have disabilities. I mean, there are people out there who are wearing glasses as thick as, what...

KING: Yes, you're not kidding.

L. SCHAPPELL: ... that they need to have on, and they get them as young as maybe 2 years old. I mean, do you want to cut out their eyes and put brand new ones in because you don't like the sight of their glasses? You know, it's...

KING: Well said. Lori and Reba, you are both very special, and we thank you very much for sharing this time with us.

L. SCHAPPELL: Thank you.

KING: Thank you both. Doctor, I don't know what to say, except to congratulate you on the work you've done and the work they do at UCLA and continued good fortune.

KAWAMOTO: Well, it was a team effort, Larry. It was not me. Believe me, it was a team.

KING: What do you think of these two ladies?

KAWAMOTO: I think they are pretty courageous.

KING: Me too. Thank you, Doctor.

KAWAMOTO: Thank you.

KING: We thank our guests earlier as well. We hope you found this program informative, interesting and enlightening. We learn a lot about each other every night, don't we? Thanks for joining us. TO ORDER A VIDEO OF THIS TRANSCRIPT, PLEASE CALL 800-CNN-NEWS OR USE OUR SECURE ONLINE ORDER FORM LOCATED AT


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