Bob: When Hope Guthrie was born, she was diagnosed with Zellweger syndrome, an extremely rare but fatal disorder. Most of the children with that diagnosis do not live to see their first birthday, and that was the case with Hope. Her parents, David and Nancy Guthrie, faced a dilemma at that point. Since Zellweger syndrome is a genetic disorder, should they attempt to conceive another child? Here is Nancy Guthrie.[ Read Full Transcript ]

Nancy: We decided that if we had another child like Hope, that wouldn't be the worst thing in the world, but we also recognized that while we face a 25 percent chance of having a child with Zellweger, we had a 75 percent chance of having a healthy child, and there was a sense of amazement at that possibility that we might have another healthy child to raise and enjoy that we hadn't expected.

Bob: This is FamilyLife Today for Friday, December 21st. Our host is the president of FamilyLife, Dennis Rainey, and I'm Bob Lepine. How would you decide in a situation like that, whether to have another child? We'll hear how David and Nancy Guthrie decided on today's program. Stay with us.

And welcome to FamilyLife Today, thanks for joining us on the Thursday edition. We have shared a compelling, moving story this week, Dennis, with a couple, with Nancy and David Guthrie, the story of Hope. It's the kind of story that -- well, not many of us walk through this kind of a valley, as we've talked about it this week. But in the case of the Guthries, it was a valley that they were destined to revisit.

Dennis: It was, and the story of Hope is the story of a little girl who lived 199 days, who, from the moment she was born, she started dying slowly because of a very rare syndrome. Her systems began to shut down, and the story was actually written about in "Time" magazine back in July of 2001 in an article entitled, "When God Hides His Face," and it's a very fair article written by a journalist.

I want to read the concluding paragraph as he shares Nancy Guthrie's words about this experience. "'In the darkest of days, Nancy said, 'We've experienced a supernatural strength and peace. Like Job, we often cannot see the hidden purposes of God, but we can determine to be faithful and keep walking toward Him in the darkness.'" And the writer concludes, "And so they do."

Nancy, David, I want to, first of all, thank you for sharing your story all this week on FamilyLife Today and for being so real and vulnerable and allowing us to suffer with you a bit and kind of shoulder your sufferings as you've shared them.

We talked yesterday, as we discussed your book, "Holding On to Hope," how you ultimately had to let go of Hope as she died after 199 days. During the period of time, as you were struggling with her brief life, you undoubtedly had to discuss the subject of what about another child. What were those discussions like?

David: Well, I think they progressed through a series of thoughts on our part. At first, the geneticist, some of the other doctors who counseled us, they explained to us that this was the result of a recessive gene trait, so it meant that both Nancy and I carried this recessive gene for Zellweger syndrome and mathematically, 1 in 4 of our children would have the chance of being born with the syndrome.

Dennis: Now, you already had a son, Matt.

David: Right, Matt.

Dennis: Who didn't have the syndrome?

Nancy: Correct.

David: He's fine. He's either like us, a carrier of the recessive trait, but unaffected himself, or he picked up the dominant gene from both of us, and he's not a carrier. In either case, he's fine, and he won't be affected by the syndrome.

Bob: And when you found out that both of you carry the recessive trait, you undoubtedly went back the other direction and said, "Well, did we know? Did any of our parents or our parents' parents -- has this ever happened in either of our families before?" Were you able to find any history of Zellweger's?

David: No, not at all.

Bob: So, somehow, you guys wind up with the recessive trait, but it's never manifest itself, as far as you know, in your families.

Nancy: Well, it requires -- to manifest itself, requires that you be married to someone with the same recessive trait.

Bob: Got it, okay.

David: Otherwise, you're not going to know.

Bob: Okay.

David: And so the geneticists explained to us, for future planning, what the odds and what the genetics of the situation were. And on a few occasions, some of them would throw in, "Now don't necessarily feel you have to do anything drastic for the future. We can test very early in a pregnancy to discover whether or not the Zellweger is present or not."

So the implication, of course, was don't necessarily run out and get yourself sterilized if you are interested in having more children, because we can figure out real early in a pregnancy, and, you know, you can terminate that pregnancy if you desire.

Dennis: Now, that's what the doctors are telling you.

David: Right.

Dennis: That's not your conclusion.

David: No, and our response to that, because of where we're coming from, our beliefs, our immediate response was, well, that's not an option we're going to consider. So a test early in a pregnancy is not necessarily going to be helpful for us if we're talking about what to do about this in the future.

Bob: You know, you expressed that at a conviction level, but I think many of our listeners can understand and relate to the conviction that you're not going to make the choice to terminate a pregnancy because of medical circumstances like that.

And, for you, that conviction was something that was in place before Hope was born. But I'm thinking about those doctors making those same kinds of suggestions. We can know early on. You can terminate this pregnancy. Had you known that about Hope, and had you made that choice as couples might do?

Nancy: We would have missed out on so much, and I know that might be hard for people to understand when they think about having a child with this many problems, as Hope had, but her life had so much meaning and brought us so much joy, and if we had made that choice, which I don't believe we would have, but we weren't called on to make that decision, we would have really missed out.

Bob: You would have missed some pain, you would have missed some heartache, you would have missed some of those things, too.

Nancy: But we would have missed the joy, too. And you know what else we would have not missed? Besides having the grief of losing her, we would have the guilt and shame, and we didn't have to experience that.

David: Something else, too, that you should know about -- the nature of the syndrome was that although the systems were shutting down, she was not, herself, suffering physically, partly because of the impact of the disorder on the brain and what impulses are sent to the brain. Our own observation of Hope was that throughout her life she was peaceful.

And I've got to admit, that's an important part of this discussion, too. As we thought -- in fact, there came that time, two or three months into Hope's life, I think, if I'm remembering correctly, where Nancy and I began to talk about this and said, "You know, we may well make attempts at having more children and not be deterred by the possibility that one of them could be born with Zellweger syndrome.

Bob: Even with a 1 in 4 chance, and that's what ...

David: Even with the 1 in 4 chance, even anticipating what if we did have another child with Zellweger syndrome, we were experiencing something that was rather amazing, and that is that it was a meaningful time, and we were not afraid, at that point, to launch into it again, if need be.

Nancy: But the truth is, we don't live in a vacuum that's just me and David. We had a son, Matt, who was eight, but also we have parents and extended family and friends, and it is very painful for a grandparent to experience their child losing a child. In some ways, the suffering is doubled.

Dennis: What did you decide to do about the subject then of having children, David?

David: Well, after much discussion and prayer about it and consideration, as Nancy said, of our families and our community, we decided that the wisest thing was not to risk future pregnancies. So I went in and had a vasectomy so that we would prevent having another pregnancy with the potential of the Zellweger syndrome occurring.

Bob: Nancy, that meant the opportunity for you to be pregnant again, to be a mom again, to have another little baby -- you were saying, "We're going to end that possibility and that chapter." Was that hard?

Nancy: I knew it was the right thing to do but, yes, it was hard. I think I didn't -- I remember that day feeling a sense of sadness about it, even though we tried to laugh our way through as much of it as we could, but I think I felt that even more profoundly after Hope died. In my grief -- there were many things I grieved. I grieved Hope's death, I grieved Hope's life and its limitations, and then I think I came to the point where I grieved the loss of possibility for our family to grow.

Dennis: And Hope died in June of 1999. December of 2000, all of a sudden ...

Nancy: I got a big surprise.

Bob: Yeah, tell us how that surprise -- I mean, I know how you figure out that you're expecting, but there had to be -- this can't be.

Nancy: Oh, definitely. You know, one morning I was lying in bed and thinking about the fact that I was very late, and I said something to David that morning. He got a very panicked look on his face, and I said, "Well, honey, you know, don't worry about it, because it's impossible."

So I dropped him off at work that morning, and I had a long to-do list but before I could concentrate on everything I had to do, I had to go get a pregnancy test.

Bob: So did you go to the drugstore and get an EPT or ...

Nancy: I did, and I went home and took it, and my heart began to pound, and I hopped in the car and went back to David's office, and when he walked in, I just shook my head. And he closed the door, and we sat down, and we were just trying to take it in, and we discussed that each of us individually had had times when we regretted having the vasectomy but then would come around to the point believing we had done the right thing.

And we thought about Hope's life and what a blessing it had been, and we decided that if we had another child like Hope, that wouldn't be the worst thing in the world, but we also recognized that while we face a 25 percent chance of having a child with Zellweger, we had a 75 percent chance of having a healthy child, and there was a sense of amazement at that possibility that we might have another healthy child to raise and enjoy that we hadn't expected.

And, you know, we didn't tell very many people that we were pregnant, because we decided we wanted to wait until we had some prenatal testing to determine whether or not the child had Zellweger before we told anyone, mainly because when we told our son, Matt, we wanted to be able to give him the full picture and have him not have to wait those weeks with us in anxiety of figuring out which way it would be.

But it was interesting to us, with the very few people we shared, mostly very godly people, many of them, their first instinct was, "I'm sure this is a healthy baby. God would not ask you to walk through that kind of loss again."

Dennis: And, you know, I can picture God strengthening me, and I could be moving forward full of faith. But then the day comes, you've got to go to the doctor, and you're going to have the testing done to determine is this child healthy or is this child not? And it's not for the purpose of an abortion, that's not an issue. It is what kind of baby are we going to have? How did you handle that day?

Nancy: Well, we went and had the test, but then we had to wait about three weeks for the test results, so we were waiting for a phone call.

Dennis: Wow.

Nancy: And that phone call came to David, letting him know that the doctor had the results, and he drove home so that we could call the doctor back to hear the results together.

And, you know, I think I had prepared more for bad news, because you don't have to prepare much for good news, it's easy to receive. So I had prepared more for bad news, but I really expected to hear good news.

Bob: When you got the doctor on the phone, what he said was somewhat ambiguous at first, wasn't it?

Nancy: Well, it was to me. He said the results are positive. And I said, "Well, do you mean, like positive like good or positive for Zellweger?" And this same doctor who had come into our hospital room that night after Hope was born to tell us that she had Zellweger syndrome, once again had to tell us that we would be having another child with Zellweger syndrome.

Bob: You said, Nancy, that you had prepared for that emotionally, but you didn't expect it. What did you do with that emotionally?

Dennis: You know, as Nancy thinks about answering that, I want to tell you what she writes, because she talks about Mary, when Mary found out she was pregnant, and Mary's response to the will of God was, "Be it done unto me according to the will of God," and Nancy writes this in her book. She says, "Isn't real faith revealed more through pursuing God and what He wants than through pursuing what we want?"

You know, that's easy to read that, Bob, at this moment, but at the moment Nancy received that news, that's where life and the truth of God's Word collide.

Nancy: That's right. You know, when I think back to that day, I thought about two things. Our biggest hurdle at that point was to think about telling our son, Matt, and the hardest thing was to think about telling our parents. To tell them that we and they were going to walk through this again -- when I make a list of hard things I've done in my life and, at this point, it feels like that list is long, that's at the top of the list -- telling our parents.

Dennis: Why would you say that?

Nancy: Because it hurt them so deeply. They love us, and they didn't want to see us suffer, and we didn't want them to have to go through losing another grandchild that they loved.

Dennis: And so when you called your mom and dad, and you called David's parents, what was that like -- or was that face-to-face?

Nancy: Well, we called them, and, like I said, it goes on that list of hardest things. We are blessed to have two sets of parents who love and follow God and can respond in faith, but it broke their hearts. And to tell them this news and to hear their hearts break over the phone was very difficult.

Bob: Your pregnancy with Gabe, you were now carrying a baby you knew was going to be born with Zellweger's. With Hope you didn't know it until the day after, until a few days later, until a few weeks later when it was confirmed, ultimately. But with Gabe now, the rest of the pregnancy, you knew what was ahead. Did that make that pregnancy just that much harder for you?

Nancy: Yes and no. It made it very strange in some ways, and, you know, it made it hard for people to know how to respond to us. You know, do I act happy about this baby or sad about this baby? And, you know, so mostly they didn't say anything, which was okay, too.

David: Nancy was remarkable, I would say, in the way that she handled that entire experience. Walking into the hospital that morning knowing what was about to happen the day that she gave birth, she was beautiful and peaceful and joyful and trusting God.

Dennis: We have a picture of Gabriel. Earlier in the week we put a picture of Hope on our website, FamilyLife.com, if you want to take a look at Gabriel, who kind of looks like a little angel, you know? Laying there on his brother's chest. How long did Gabriel live, Nancy?

Nancy: Well, you know, Gabriel seemed stronger than Hope. He was hardier, somehow, and we thought we would have him longer than Hope. He lived just a few days over six months, and we were given just one day short of six months with Gabriel.

Dennis: Nancy, I find the name "Gabriel," it made me grin. It made me emotional, too, because you spoke of Gabriel around two messages that the angel delivered. In Daniel, chapter 9, Gabriel came to say that you might have insight and understanding. That's what you all have gained, and then Gabriel again appears to proclaim the message of God among us, Jesus Christ, the hope of glory.

And you asked the question, can faith survive when hope has died? It can when the good news has been announced. What a parable.

There is one last statement, Nancy, that you make in your book about the glory of God that I want to read. "How do you display the glory of God? You reflect His character. Instead of demanding an answer, you decide to trust Him, recognizing that your circumstances provide an unparalleled opportunity to glorify God just by your trust in His unseen purpose."

Bob, people can look at this story this week and certainly today and think about the birth of a second baby with a syndrome that was going to take his life in less than six months, and think, "What purpose can there be to that?" There is a great purpose. It is a purpose of honoring God in the midst of dramatic suffering.

Bob: I think that's ultimately what the two of you have done, and then you have also taken the courageous step, and it really is a courageous step, to do what 2 Corinthians, chapter 1 says, and that is you have comforted others with the comfort that you've received. You've taken the comfort that God provided for you, and you have used it in this book, "Holding On to Hope," to reach out in comfort to others. And then the devotional, Nancy, that you have put together now called "A One Year Book of Hope," that is a daily devotional for folks who are trying to make sense out of their suffering. You have found a way to bring beauty from ashes in this situation.

And I think, Dennis, of Dr. John Piper, who has said that folks aren't going to look at our lives when we're going through good times and say, "I don't understand it. These people are happy in the midst of good times," but they will look at our lives when we're going through difficult times, and they see joy and hope and peace and contentment, and they can't figure that out.

That doesn't mean that our emotions aren't real, it doesn't mean that we don't struggle, but it means that we could make sense of our struggling by looking at the sovereignty of God.

Again, let me point our listeners to the books that you guys have written. I think they're very helpful. We have them in our FamilyLife Resource Center. You can go to our website, FamilyLife.com, click the red button that says "Go" in the middle of the screen, and that will take you right to a page where you can get more information about the book, "Holding On to Hope" and about "The One Year Book of Hope." Both are available from us here at FamilyLife.

Again, our website is FamilyLife.com. Click the red "Go" button in the middle of the screen or call us at 1-800-FLTODAY, 1-800-358-6329, someone on our team can make arrangements to have either or both of these books sent to you. And if you want both of the books, we'll send along at no additional cost, the CD audio of our conversation this week with the Guthries, and you can listen to it again, or you can pass it along to someone who might benefit from hearing these interviews.

You know, one of the things that we are hoping for here in the month of December is that our listeners who do get in touch with us will consider making a year-end contribution to the ministry of FamilyLife Today. We are listener-supported, and so those year-end donations are critical for the ongoing work of this ministry. In fact, about 40 percent of our annual donation revenue comes into the ministry during the month of December. So it's a critical month for us here.

We have recently had some friends of the ministry who have come alongside us and said, "We would like to encourage regular FamilyLife Today listeners to join with us to make a donation to FamilyLife here at the end of the year." They have agreed that they would match every dollar we receive during December on a dollar-for-dollar basis up to a total of $500,000. So when a listener sends us a $50 donation, that donation is essentially doubled. We get $50 from this group of friends of the ministry and so on all the way up to this total of $500,000, and we are hoping, here in the last few days of December, to take full advantage of this matching gift opportunity.

And if that's going to happen, we need to hear from as many of you as possible. You can either make a donation online at FamilyLife.com or you can call 1-800-FLTODAY or you can pray for us that God will raise up folks who can make a donation here at the close of 2006, and we appreciate your support. Again, the website, if you'd like to donate online, it's FamilyLife.com, or call 1-800-FLTODAY, and you can make your donation right over the phone.

Well, tomorrow we are going to hear some -- well, some thoughts from Anne Graham Lotts, who spoke at Hope's memorial service, and I hope our listeners can join us as we hear about that.

I want to thank our engineer today, Keith Lynch, and our entire broadcast production team. On behalf of our host, Dennis Rainey, I'm Bob Lepine. We'll see you back tomorrow for another edition of FamilyLife Today.

FamilyLife Today is a production of FamilyLife of Little Rock, Arkansas, a ministry of Campus Crusade for Christ.