They are often called Siamese twins, but the medical term "conjoined" expresses far better the way in which children like Ruthie and Verena Cady go through life. The girls were born April 13, 1984, fused from the sternum to the waist. They share a single three-chambered heart, making it impossible for doctors to separate them surgically. Early on, it seemed they might not survive for more than a couple of months, and even now their health remains fragile. But recently the girls celebrated their fifth birthday, at home near Providence. For their parents, Marlene, 36, a teacher, and Peter, 33, a chef and culinary instructor, and for the girls' sister, Maria, 7, the date was also a celebration of family and the special meaning that Ruthie and Verena have given it. Below, Marlene Cady tells of the joys and tribulations of raising her twins.
Before Ruthie and Verena were born, we knew we were going to have twins, but it wasn't until the doctors delivered them that they discovered the girls were conjoined. I was in the delivery room, and everyone was very quiet. It seemed an eternity since anything had happened, so I called out, "Hasn't at least one of them been delivered yet?" That was when the anesthesiologist came over and told me that my babies were conjoined.
At that moment, my head felt numb, and the words didn't register. I thought, "Oh, well, okay, let's just pull them apart. Just unsnap them or unzip them or whatever you do." It didn't occur to me that they might be sharing organs. We later learned from the pediatrician that he almost didn't spank them to get them crying, because he thought maybe it would be best not to. Then they started crying on their own, and he realized they had a little oomph.
If I had been told right after their birth that the twins might not be separable, I would have felt overwhelmed. There must have been something that protected me from the full awareness of what raising the girls would mean. People would come into the hospital and say, "How could this have happened to you? You're too nice a person." I remember saying to them, "What do you mean, how could this happen to me? It's not that this happened to me. It happened, and it's just there." When the girls were conceived, we were living in Durango, Colo., and I had been working in a print shop where there were a lot of chemicals. Our house was also in an area that had been mined for uranium, and there were radioactive tailings around. But doctors don't know whether environmental factors could influence the formation of conjoined twins, and I feel that mulling over what might have caused it is a waste of time. You can't prove anything, and even if you could, what would that accomplish?
Following their birth, the twins were rushed to Denver for intensive care. Several days later, the doctors told us that Ruthie and Verena shared a heart and some intestines and that their livers were fused together. They said they would probably live only a couple of months. That night I remember crying and thinking that I didn't have even one real baby, let alone the twins I had hoped for, and that the ones I did have weren't going to be around for very long. But during the night, that sadness went away, and in the morning I thought that perhaps the twins were born that way because we were supposed to be gaining something from their lives. God wouldn't say, "Okay, you two kids are going to be stuck together to teach your parents a lesson." Maybe the situation was created so that we could grow closer to God if that was our desire. It was not possible to separate them, so I felt it must be that they were meant to be together.
The day we took the girls home I was carrying them from the hospital to the car when this guy screamed across the parking lot, "Hey, lady, are those the Siamese twins?" At that moment I realized that from then on I was either going to have to face life or run and hide somewhere. So I said, "Yeah, you want to see them?" He came running over. He had four friends with him and they all came along. I saw that they weren't at all malicious, just curious. The less we know about a thing, the greater the chance that we will feel negatively toward it, and the more you know, the harder it is to feel negative. From that point on, I realized that we needed to share the girls with as many people as possible.
Peter and I had both grown somewhat cynical before Ruthie and Verena were born. It seemed to us that a lot of people cared more about money than about each other. We thought our world had gone bad and that people were only out for themselves. Ruthie and Verena have enabled us to see that people are not really that way. It isn't just a matter of people showering us with kindness and love because of our daughters. When people see Ruthie and Verena, there is something about the girls that gives love back. They have so much joy in their faces and so much happiness with what they have that it makes other people feel joyful and loving as well.
Caring for the twins was difficult at first. We lived at 6,500 feet above sea level, and their blood could absorb only 80 percent of the optimum amount of oxygen, so they needed oxygen continually until they were 4 months old. They couldn't turn themselves or move very well, so they got bedsores, and because they were so close together they'd hit each other once in a while and wake each other up. They would wake up every hour, every night for two years. At 9 months, they contracted pneumonia and had to be hospitalized. Peter and I felt trapped by their needs at times, and we even found ourselves talking about "now" as opposed to "after the girls die." But when we celebrated their first birthday, we realized that we could wait for things to change until we were 105 years old, but then we would have spent the time waiting instead of living.
There are people who come up to us and say, "Oh, how tragic, how tragic." I always tell those people that the only tragedy is in their interpretation of the girls' situation, because obviously Ruthie and Verena are happy kids. We allow them to explore, and they find their own limitations. We don't set limits for them. When they were younger, I would try to teach them the "best" way to walk or sit or go to the toilet. Invariably, when I left them alone, they found better ways of doing things. For instance, they learned to toddle using a special four-wheel walker. After they were getting around on their own, at age 2, I thought they would have to take turns walking forward or backward, since they face each other and can't both walk straight ahead. But they figured out it was better to walk sideways, almost like dancing.
When they first got their specially designed tricycle, which allows one of them to pedal while the other rides along, Verena would become frustrated and say, "Mommy, would you tell my right foot to go up when I tell my left foot to go down? They're mixed up and don't know what they're supposed to do." After they got the hang of their new toy, they rode up and down the street for three days, knocking on doors and ringing bells to make sure everyone knew about their new treasure.
Like all conjoined twins, the girls are identical. They will probably develop at the same rate, but they have separate nervous systems and their personalities are certainly distinct. Verena is the verbal one. She insists on answering the phone and chatting. Ruthie enjoys fine motor skills, like painting, drawing and making things with her hands. Ruthie is also domineering and knows exactly what she wants. Once she has made a decision, no matter how much you scold her, she's not going to change her mind. Verena, on the other hand, likes to make sure she's doing the right thing. Ruthie will misbehave, and Verena will whisper to her, "Ruthie, don't do that, that's not a good thing to do." Having Verena checking on her helps Ruthie out, because it means she doesn't get her own way all the time.
Unlike most 5-year-olds, the twins have mastered the art of compromise. If they have a disagreement, they're usually very good about talking it over and resolving the problem right away. Conflicts, however, do crop up. Verena loves to eat, whereas Ruthie finds food really boring. She may eat only half a cup of fruit a day, which means Verena's got two bodies to feed. It's no big deal for her to have three bowls of cereal, two yogurts and a couple of pieces of toast for breakfast. Sometimes, when Verena is just finishing up her second sandwich and asks for a bowl of ice cream, Ruthie will grab the food and throw it across the counter, insisting, "I've had enough! I'm tired of sitting here!"
When one misbehaves, of course, the other has to suffer some of the consequences too. Ruthie has had to go stand in the corner a few times for being naughty, and Verena just goes along with her. She'll say, "You can't leave the corner yet, Ruthie, you're still naughty," even though she's there too. She just understands that Ruthie has got to be punished and that's the way it is.
The twins have been attending preschool for the past two years, and this fall they will be going to the local kindergarten. The other kids in school do not seem to care whether Ruthie and Verena are stuck together or not, and they accept them completely. I teach a Sunday school class of second graders, and one day we had a lesson about being handicapped and having special needs. I brought in paper bags and tied them around some of the children's wrists so they couldn't use their hands, and I put blindfolds on some of the others. I also brought a couple of belts to strap two of them together. The most popular handicap was being belted to someone else. Other children see that Ruthie and Verena always have a friend right there. They're never lonely, they always have someone to hug them if they get hurt or to share secrets with.
In the past, the twins' older sister, Maria, has been upset at all the attention they get. People automatically gravitate toward Ruthie and Verena and often only speak to Maria as an afterthought. But she is a beautiful child on her own. "I like being Ruthie and Verena's sister because they really love me and they're special," she told me recently. "Maybe I'm not as special because it seems sometimes people don't even notice me. Sometimes I feel sorry for my sisters being attached, because they don't always want to do the same thing. But when they aren't arguing, I think they're very lucky to be together."
Ruthie and Verena sometimes like to talk about the future. When they grow up, they say, one is going to be a doctor and the other a nurse, but which one is going to be which changes every week. They have also talked about when they get married. For the longest time they wanted to marry their Uncle Walter, my brother, who just loves kids. They said, "Well, if we get married to him, Mom, he'll have two wives, and he'll have so much fun with two instead of one."
When I think about how long they might live, it's in terms of a couple of years. We live for the present. We have to keep an eye on their health, though they go to the doctor only once or twice a year. A physical therapist also works with them once a week. Their doctors think the twins lack a spleen, but the main threat to their health is that they share just one imperfect heart. That makes them tire more easily, and it's harder for them to recover when they get sick. Since they are more susceptible to infection than most children, they take daily doses of antibiotics.
At first, the hope that one day some new medical technology might be able to separate Ruthie and Verena always lay in the back of our minds. But as they get older and interrelate more and more closely and increasingly depend on one another, we have pushed that thought further back. If someone asks if we have any plans for surgery, the twins find that very upsetting. One doctor was so intent on performing some kind of operation that he seemed to think it would be fine if one of them died as long as they could be successfully separated. If Ruthie and Verena survive another few years, and it does become possible to separate them, it won't be up to Peter and me. Ruthie and Verena would have to say, "We understand that medical technology would allow it, and we think that we want to be separated." We have to remember that it's not just a matter of separating them physically, but also psychologically, spiritually and emotionally. I don't know that the rest of us really have the capability to make that decision for them.