Case Study 1: New Choices, New Dilemmas JIM HAMPTON Good morning, 604 with Jim Hampton. How are you today? Yes, I'm sorry to be the one to break this news to you, but it is time to get the eyeballs open, feet on the floor and face a Thursday. And if you're like my wife Marilyn at home, just waking up now, and the alarm clock's going off, let me tell you what it's going to be today...We're going to have some... MARILYN LEWIS-HAMPTON Jim and I had been married about five years when I got pregnant, and we were extremely excited. When I went to my first prenatal visit, there was a woman there who asked us if we would be willing to donate some extra blood so that they could determine whether the number of carriers for cystic fibrosis in Northern California was the same as their national numbers. I really didn't think it was going to be any big deal at all. I figured there's no cystic fibrosis in my family, there's no reason to believe that I would even be a carrier. So I just figured I was donating to the cause for science. And then about 2-1/2 weeks later, I got a phone call at work, and yes, I was a carrier for cystic fibrosis. And I was like, no kidding, well, that's interesting. I always knew I wasn't perfect, and now I know that my imperfection is that I have this mutated gene. JIM HAMPTON ...Made a big difference last year. MARILYN LEWIS-HAMPTON So within a day, Jim went in and he had his blood drawn and at that point, there was a little more tension building, because now we knew that there would be a possibility that our child would have cystic fibrosis. And then we did. We got another phone call from the genetic counselor saying, you know, I'm sorry, but yes, Jim, your husband, is a carrier. He's a carrier for cystic fibrosis as well. So then we were like, oh, my god. Now this is a little bit more in our face. So we started looking up the numbers and what were the possibilities. If the child inherited a good gene from each of us, then it would be no problem. We would have a healthy perfect little baby. If the child inherited my good gene and Jim's bad gene, then it wouldn't be so bad. That child would be a carrier, just like us, they wouldn't have any symptoms of the disease, but if the child inherited two bad genes, then that was going to be scary because that would mean that the baby would have cystic fibrosis. Right now, the CF life expectancy is about 29 years. People with cystic fibrosis end up with severe lung infections that their body simply cannot fight off. Aside from the lung disease, kids don't grow, and they get malnourished and anemic. The same day we got the call that Jim was a carrier, I'd had an ultrasound and discovered that I was carrying twins. So that was just this huge thing, I mean, that was really awesome, to discover that I had twins. And that was even more in the front of our minds than the whole cystic fibrosis thing. We were just, you know, in awe. I had always wanted to have twins and when I was a little girl, I used to tell my mother, I'm going to have twins. JIM HAMPTON So we were just real jazzed about the whole thing, and then of course, it was like, uh oh, but we had this concern now. We were both carriers. We could have twins with cystic fibrosis. Then we had to make the decision, well, do we want to know? Do we want to know if the girls are going to be born with CF? MARILYN LEWIS-HAMPTON Even though there's a, you know, the larger part of me needs to know, and I'm that kind of a person where I like to have as much information as possible, there was also a part of me that didn't want to know. And I can understand people who say, isn't it amazing the technologies available, and wow, you know, you can just have a blood test and they can tell you if you're a carrier, but I don't want to know. And I can respect that and I understand it because there is a portion of me that said, ignorance is bliss. If we don't know, then we can live happily ever after. And then about 8 o'clock one night, the phone rang. And I remember it. Because you know, we were both waiting for that phone call in the back of our minds, both of us. And it was our genetic counselor and she called and as soon as I picked up the phone, I could hear it in her voice. You know, because she was trying to have like a neutral voice and say, hi, you know, this is Laurie, how are you doing. But I could just feel it in her voice. And she just said, I'm really sorry, I'm really sorry, but both babies have cystic fibrosis. And I just, I mean, I broke down just as I am now. I just couldn't believe it, and I remember just swearing. I was just so, I had so much anger. And I felt so cheated. And I was so pissed off that this was going to happen to us. JIM HAMPTON You know, it's like being hit in the gut with a baseball bat. You have this, just this horrible feeling, because again, you head starts swimming, you know, with, literally nothing. It's like white noise in your brain. I just keeps going and going and you can make, can't focus on anything. MARILYN LEWIS-HAMPTON And I just turned to him and we just hugged. We just had this long, sad hug and we both just cried, and said, what are we going to do, what are we going to do now. And it was hard, it was really hard. LARRY LEWIS Had it been our situation when we were younger, I'm sure that I would have felt that they should have terminated the pregnancy. It just seemed like too much to really, for young parents to take on a situation like that. RUTH LEWIS We had felt all along that perhaps they should not carry them to term, but at the same time, we would never have tried to influence them to feeling the same way we did. I mean, it was their decision and we emphasized this, that we would support them regardless of what decision they made. MARILYN LEWIS-HAMPTON People would say, oh, you're pregnant, you know, in the grocery store, or whatever. Women, you know, come up to you all the time and put their hand on your belly or say, oh, you know...It's sort of something our society does. And so I would say, yeah, I'm pregnant with twins, twin girls. I'm having two girls. And I would say, with cystic fibrosis, and they would kind of stop and go, oh, you know, and they would either say, well, what is cystic fibrosis, and I would go into my explanation of what the disease is, and then I would say, you know, it's a chronic illness, and they'd say, oh, but they're going to get better, right? And I'd say, no, it's chronic. That means they're going to die of their disease. And then they would, some people would look at me and they'd go, you know, you're going to keep your pregnancy? Like, are you crazy, you know, well, why are you going to do this? And that was kind of hard. It was hard to confront that and say, yeah, yeah, we chose to keep this pregnancy. MARILYN LEWIS-HAMPTON Hi, Sweetheart, how are you? We missed you. How are my girls? Did you have fun with Aunt Maggie? Where's Aunt Maggie? Is she inside? Come on Stanlick, come on Dennigbuggy. Let's go inside, let's see what Aunt Maggie's up to. MARILYN LEWIS-HAMPTON I think that the culminating factor in our decision-making process to keep this pregnancy was the fact that they were twins. You know, I wanted twins. I just thought that that was such an awesome gift, and I just wanted to be able to, you know, talk about having twins and I just fantasized about how much fun it would be to have two babies, and the dynamics involved with that, and watching them grow up and that relationship. And so I thought, god, this is no neat that they will have each other. And that was part of our justification too, they will have each other. You know, they may be very sick, but they will have each other. JIM HAMPTON Hey girls, I'm going to make you a Mickey here. A very special pancake. MARILYN LEWIS-HAMPTON You're getting so heavy. That's good. Go ahead and take these. You've got to swallow these first, please. OK let's swallow your pinkypoo so that you can eat some breakfast. Good. Two girls swallowed. RUTH LEWIS So what did the doctor say about her weight gain this time? MARILYN LEWIS-HAMPTON Well, he said, actually that she hadn't gained any weight in six months, not even an ounce, which really surprises me. I almost don't believe it. So now we have to feed here, push some calories on her. Alecky gained 3/4 of a pound by comparison, and Lizzy didn't gain any. RUTH LEWIS But maybe she grew a lot in height, do you think? MARILYN LEWIS-HAMPTON She did grow in height, and they said, actually that that was good. That that showed that she is growing, but she's... I guess there's a correlation between weight gain and lung deterioration, and so they like to keep the weight up as high as possible from the beginning. RUTH LEWIS The first year, we were very involved with the babies' care...for a period of time we were there always and talked to Marilyn and Jim a lot on the phone if we weren't actually out at the house. MARILYN LEWIS-HAMPTON Want to climb on Poppy's lap? RUTH LEWIS Here we go. OK. CHILD Let me hold it. LARRY LEWIS Sounds like a kazoo. RUTH LEWIS Let's breathe, OK. Let's breathe, that's it. Breathe deep. There you go. Very good... RUTH LEWIS Marilyn just called on the telephone this one afternoon, Larry was still working, I believe, and said, OK, which one of you has a recessive gene for cystic fibrosis? And I, you know, we were somewhat amused, or I was somewhat amused, because I thought, you know, come on, Marilyn, I never heard of anything like this in our family. LARRY LEWIS You know it was just mostly a shock, I guess, that anything like that was in the family, and then later, when we found out who the carrier was, well, then of course there was guilt involved. I'm the one that's the carrier. RUTH LEWIS She makes a good drum. MARILYN LEWIS-HAMPTON She likes this beating stuff. She thinks this is a good rhythm game... I don't think Alec and Liz really understand what their cystic fibrosis is going to mean in their lives. At this point, they're just really sick of taking meds all the time, and so they're rebelling against the routine of having the disease, but they don't understand that their disease is fatal and that it's a real serious issue in their lives. CHILD One...two, three. MARILYN LEWIS-HAMPTON One...two three, OK, let's count. One, two, three, four, five, six. CHILD Six, seven, eight, nine, ten, eleven, twelve, thirteen, eighteen, nineteen, twenty. MARILYN LEWIS-HAMPTON Are you trying to cheat? Are you trying to shorten your beating? CROWD (Sings Happy Birthday to twins.) JIM HAMPTON OK, now you've got to make a wish and blow out the candles. MARILYN LEWIS-HAMPTON All right, one more, blow! Get that last candle...Lizzy. ANNE LEWIS You know, there aren't any guarantees for any of us, and I think there's always a myth about science in that science can solve all our problems and if we do genetic testing there will suddenly be knowing perfect children grow...but we're not there. SHELLY MILLER If you're put in a position that Marilyn and Jim are put in, I'm sure it was definitely confusing and emotionally frustrating, but I think that it's important to have those choices instead of going through with something and, you know, thinking that you're going to have a perfectly normal child and you're going to give birth and you're going to go home the next day and you give birth and you find out you're not able to take your child home for months and they're in surgery. I think that it's important to know that ahead of time so you can have those choices. I think the choices are good. ANNE LEWIS Who's drawing up that list of what is too severe or not severe enough to have the genetic testing? That is a possible tack to go. And I guess what it comes to is who makes that value judgment. MARILYN LEWIS-HAMPTON Thank you...We needed this. Look, it's all mixed. MARILYN LEWIS-HAMPTON The prognosis for Alec and Liz is probably not real hopeful. As much as I don't even want to say it out loud, I don't expect them to live to adulthood. I guess my personal hope is that they survive through high school, or at least through college. That would be really great, if they make it that far. MARILYN LEWIS-HAMPTON In the back of my mind, I've always, I've felt cheated in some ways. I mean, part of what every parent thinks about is that you know, their children will outlive them. And you know, you have a natural progression of how you die, and you die and your... generations carry on for you or whatever. Well, we may not have that. Alec and Lizzy may die before we die, and I... I don't want to be left alone. I don't know what life would be like without them. And there's a part of me that's really hoping that if I have a healthy child, at least I'll have somebody that you know, lives on after I die. TWINS This is dad. MARILYN LEWIS-HAMPTON So when the girls were about a year old, I found out that I was pregnant again. We pretty much felt that if it had cystic fibrosis, we were going to have to terminate this one. I now had spent a year with two very sick children, and I knew, and Jim felt strongly also, that we could not handle a third child with cystic fibrosis. After getting the results back from the CVS test, we did find out that that baby would also have cystic fibrosis and we decided that we needed to terminate that pregnancy. RUTH LEWIS How we doing, huh? You're doing fine. That's hard to fold those big socks, isn't it? MARILYN LEWIS-HAMPTON Some day Jim and I are going to be confronted with the fact that we're going to have to tell Alec and Liz that we terminated a brother or sister of theirs because that baby would have had cystic fibrosis. And I don't know how I'm going to do that, exactly. Because I don't want them to feel guilty. I'm hoping that at that point, you know, when it feels right to tell them, that we did terminate a baby that would have had CF, that they'll also have the intellectual ability to process on a rational level what that would have meant for our family. And what that, how that would have impacted them in a negative way. And so, hopefully it'll all work out. But it's going to be tough. It's going to be tough to tell them that fact. And I'm not looking forward to it. But they'll need to know. And I will tell them. MARILYN LEWIS-HAMPTON Hey, put your hand on my tummy. You feel that baby kicking? That's your sister. She's saying, Hi Lizzy. What you doing out there? MARILYN LEWIS-HAMPTON Not long ago, Jim and I found out that I was pregnant again. We're looking forward to having a healthy child that we can bring home from the hospital, and I think it's really going to be a positive thing for this family, because Alecky and Lizzy will get to be caretakers instead of being cared for. And I think it's going to be really good, because cystic fibrosis has become a central focus of our lives, and this is going to relieve us a little bit of that stigma. You know, it'll be Alecky, Lizzy and a third baby who doesn't have a name yet. We haven't come up with a name, but you know, we won't be the family with twins with cystic fibrosis. There'll be a new element. And that's going to be healthy, I think, for all of us. CHILDREN Popcorn popping on the apricot tree, etc. JIM HAMPTON What's perfection? A quest for a perfect baby. I don't think there is such a thing but yeah, you always have that quest, at least to achieve something close to perfection. You know, I hope the new baby has an attitude like Alec and Liz, has, is exactly like them in every respect except for the fact that she won't have cystic fibrosis. I hope the new child is a lot like Alec and Liz. MARILYN LEWIS-HAMPTON It's true. Alecky and Lizzy are just about as perfect as you could ever wish for. They're such nice little kids and, they are, they're sweety pies. And I laugh... that's right. We want Alecky and Lizzy for our third child, but skip the CF, please. It's true. And it will be a lot of fun to bring a baby home from the hospital. TEXT SCROLL Marilyn and her family are doing well. The Cystic Fibrosis test was one of the first genetic tests available. Since it was introduced in 1990, more than 300 genetic tests have been developed and many more are expected soon. Continue to Unexpected Consequences.