Mrs. Laura Huene: And I said, "What's wrong? What's wrong?" And she said, "I'll go get your doctor."
Jim Daly: Oh.
Laura: And I jumped off that table, wiped all that stuff up.Josh meanwhile is standing next to me going, "What? Honey, Laura, what's wrong? What's wrong?" And I said, "Josh (Emotion), we're not gonna have a baby; we're gonna have a funeral instead."
End of Teaser
John Fuller: There are few events in a family's life that bring more excitement and joy than the anticipation of a new baby. But for some, that joy is suddenly torn away by heartache and despair because of a terminal diagnosis. And on today's "Focus on the Family" with Jim Daly, you'll hear about one family's story and their courageous decision to celebrate life, no matter how small or feeble or short-lived. We're glad you've joined us today for "Focus." I'm John Fuller.
Jim: John, you know, one of the pillars here at Focus on the Family is the sanctity of human life and I hope people who have listened to the broadcasts or read my newsletter over the years see that and feel that. Dr. Dobson was right there. It's a principle that he put into place that we carry forward today. We will never back up on the sanctity of human life and clearly we believe the Bible states that human life is created by God. We're created in His image. And as a result, human life is significant and sacred—from the embryo in the womb to the elderly who perhaps are taking their last breath. Each one of us have value.
But admittedly, it can be hard to understand God's plan and purposes for these circumstances that we find ourselves in, especially when it's painful or unhealthy or there's suffering involved. In fact, John, I'm reminded of the program we aired with Lon and Brenda Solomon, who are today raising a daughter with severe disabilities and what a powerful testimony they shared about that or Kara Tippetts, the young woman who died from cancer and we did two broadcasts with her before she passed away and she left behind four young children. These are things that are difficult to understand. Today we're gonna hear from a couple who knew their baby was going to die, yet they chose to celebrate life and I think it's an informative way to embrace a very difficult circumstance, but do it in a biblical context.
John: Hm, yeah and so Josh and Laura Huene are with us and they live in Littleton, Colorado, a little bit north of here and they're the parents of five children.
Jim: Welcome to the program.
Laura: Thank you so much for having us here today.
Jim: I appreciate it for both of you being here. Let me start with the day that you found out what was going on. Paint a picture for us. Where were you at in your pregnancy? How many kids were in the home already? Just tell us a bit about your family.
Laura: Our family, we had three kids at that time. We had three kids under 5 actually (Laughter) and was pregnant with our fourth.
Laura: [It's] an adventure always at our house. And we were about 22 weeks into my fourth pregnancy and I had kind of felt like, almost the entire time, I was more sick with this baby than I was with the other three. I was like, oh, what is going on? I must just be more tired, I'm sure, chasing three other kids around, pregnant again.
Jim: Were you worried or just—
Laura: I was worried.
Jim: --observing a difference?
Laura: In the back of my head, my background is labor and delivery nurse, so I always had a few of those tapes in the back of my head of, oh, is there something going on? Like I couldn't really shake this nagging feeling that something was wrong. Every appointment I would say, "Are you sure?" I would say to Josh, "Look it, are you sure there's nothing wrong with this ultrasound picture? Compare this to Zoe's ultrasound. Are you sure there's nothing wrong?"
Josh Huene: Yeah, I think this was the first pregnancy that she actually had concern, you know, being a …
Jim: So, you felt it as husband and dad.
Josh: I did and I certainly dismissed it as, you know, three kids under 5. Like, oh, we're gonna be okay, you know, kinda steady the ship, you know, everything's gonna be normal and you know, stay as positive as you can. But in looking back at that situation, we had lots of ultrasounds early on, you know. Typically when you're first diagnosed with, you know, being pregnant and we got the early pictures. I call 'em "monkey pictures." They look like little babies, you know. (Laughter) And so, we'd put 'em on the frig and you know, Laura would just wonder, you know, did that look right? And I'd always [say], "Oh, we're fine; we're fine, honey. It's okay." And I think it was just the normal husband, you know, reassuring.
And even going into that major ultrasound, we're gettin' ready to leave town the week later, so we have to hurry up and get this done and we had a sitter for the kids. We had to hurry up and go to this doctor's appointment and hurry up and get it over with and just make sure everything was okay. But in hindsight, we did. I don't know if it's mother's intuition, call it what you will, but Laura felt like there's somethin' wasn't right about it.
Laura: Well, and I think that speaks to that beautiful bond between a mother and her baby, like whether or not it was something that I was really ready to admit, that there could be something wrong, it's that bond that is there from the very, very beginning.
Jim: So you go to the doctor's appointment and--
Laura: Lay down on the table.
Jim: --and talk about that. So, what happened and what did the doctor say to you?
Laura: Yeah, it was a beautiful, gorgeous Colorado bluebird sky, spring day in March and I walked in and got ready for the ultrasound and Josh even said to the sonographer, he said, "Hey, would you just tell her everything's gonna be fine with this baby?"
Laura: And she went, "Why would you say that?" as she's looking and as she had the probe on my belly and I knew then 'cause her face kind of dropped. And she said, "You guys, I need to go get your doctor."And I said, "What's wrong? What's wrong?" And she said, "I'll go get your doctor."
Laura: And I jumped off that table, wiped all that stuff up. Josh meanwhile is standing next to me going, "What? Honey, Laura, what's wrong? What's wrong?" And I said, "Josh (Emotion), we're not gonna have a baby, we're gonna have a funeral instead."Because I knew in that moment, I saw on that ultrasound picture, a space that was black where her head was that should've been white full of brain. And I knew that there was something terribly wrong with this baby, by the face that the sonographer did and my biggest fear was now confirmed in that moment.
Jim: Oh, man. I mean, I can't imagine. The doctor walked in and how did he say [that]?
Laura: And he said that, "Something's wrong, Laura, look," He said, "Look, you guys, let's go upstairs to the perinatologist and go confirm this diagnosis." It was something he'd never even seen before. Her official diagnosis was alobar holoprosencephaly. It's a big long word that I didn't even know how to spell--
Laura: --or say for so long.
Jim: And what did it mean?
Laura: It meant that she only had a brain stem and the rest of her brain had failed to divide and develop, so it was just a big empty space in her head. She had some problems with her eyes. She just had (Emotion) some problems with her eyes. I'm convinced that her nose is probably what everybody's nose in heaven looks like because it doesn't look like any of ours. But from lips down, she was absolutely perfect, beautiful perfect baby.
Jim: Man, how do you manage that as a couple? Again, you're talking to people who have gone through difficulties, perhaps miscarriages or other things, other you know, development issues in the womb.Josh, as a husband and you hear the doctor say what he's saying and of course, your wife is medically trained and knows a bit more what's happening there as a nurse, quite a bit more, how did you respond in that moment? What did you do?
Josh: It's tough. I mean, we just kinda hit a brick wall. You know, I think a lot of people, you know, we'd been blessed up to that point and we had met in college and you know, we had good jobs and we had some beautiful children and so, this was the first major brick wall that we had hit in our life. I didn't know. I didn't know that day what to do, so I think in hindsight, Laura and I just kinda went back to our foundation, you know. You just kinda hold each other and you just, you know, you just work through it. And I realized I just needed to let her grieve the way she needed to grieve. And I think in hindsight, going through this, you realize that men and women grieve in completely different ways and I think, you know, for a man is, you just want to work through it as quickly as possible and move on. And I think sometimes women need time, you know, different amounts of time for different people.
But I think, you know, it was the Holy Spirit [who] just gave me a peace and I think I was able just to hold Laura and just let her process this the way she processed and not only the hours, you know, to follow, but the days and the weeks and the months and even the years to follow, just to process through this.
Jim: Talk though about what the doctors began to suggest because of the diagnosis and how you worked through what your next steps would be.
Laura: So, as we were there up in the perinatologist's office and I knew him because I had worked at this same hospital, so it was a privilege that I did not take lightly, that we were able to be seen within the same hour of receiving a devastating news, to go up to the specialist. And he said, "Well Laura, we can go upstairs and we'll take care of this today and we'll just take care of this today for you." And Josh didn't really know what that meant and he said to me, "What are they talking about?" It's, well, to go upstairs and have an induction today right now. And I said, "We're not doing that."
And he left the room and said, "I'll give you guys some time to think about your decision" and brought in some textbook, copied of what her diagnosis was, pages of teeny, tiny print. And he said, "Are you guys sure, 'cause we can just take care of this today. Are you sure?" And I said, "We're sure. We're gonna go home."
Jim: Let me ask you, though, in that context. I appreciate and believe in that decision and support it 100 percent. It's a very difficult decision—
Jim: --for a woman. And speaking to either a Christian or a non-Christian woman in that context, can you give us more of the rationale as to why, not just the mom response, but what was running through your mind and your mind, Josh, about why to say no to that and to go through the process—
Laura: I think—
Jim: --of giving birth?
Laura: --I think part of it was us knowing that I needed some time. I think we so rush through things here and to be able to have some time and space to think about that and knowing that, yes, the outcome was gonna be exactly the same, whether or not we would take care of that problem today or let this baby be born in its own time, death was the ultimate end of this process for sure. And I see how people can get caught up in, well, this is what this really smart man is telling me to do. Let's do this. But I knew that wasn't a decision that wasn't gonna be just left to us to end this quickly.
Jim: In fact, you named your baby and you planned for Pearl's death, even as you were giving birth to her. Talk maybe in a little deeper way as to why it was important to you as a couple to go through all the pain of delivery and the process of delivery and to see your baby for maybe moments. Talk about all of that.
Josh: You know, I think quickly after that diagnosis, you know, hours, days to follow, is we wanted to keep her as long as we could, right? I mean, God had blessed her to us and whether she lived for minutes or whether she died in the womb or whether she lived for days, 'cause there was, you know, multiple options, you know, we chose to celebrate her as our daughter.
And so, you know, we wanted to carry her as long as we could and Laura certain had some medical complications and we had to manage the care of Laura, you know, make sure it didn't cause her, you know, physical harm.
And it's interesting. You know, days to follow we actually had a scheduled trip out of the country and … and we just chose to take Pearl with us, so the kind of running fun in our house is, you know, she got to go to a different country. She got to go to Ireland and you know, the other children have not. So, you know, we chose to embrace the situation and just teach our other three small children how to deal with this in a positive way.
I think we all encounter situations in our life. You know, it may not be this exact situation, but you can choose how to work through grief and work through this process. So, we just chose to carry her like a normal child, celebrate each day, each hour we had with her and then also bring our three little children along in journeying with us, to, you know, celebrate her life in the short time we had.
Jim: Well and some would call that "courage." Some may not even understand why you would've done that. Talk about how you saw it. Was it courageous of you? Or was it simply the right thing to do?
Laura: I wouldn't say I was being courageous or brave. Part of it was more, why not? This was my baby. And why not give her a chance? It's the "what ifs?" What if they were wrong? But I also knew that I had to have redirected hope, too, was hope for just moments with her.
And if I had ended my pregnancy early, what if I wouldn't have had any of those little moments with her? And I think as a parent, I think anybody would say their biggest thing is, we want to protect our children. And I wanted to keep her as safe as I could for a long time. And there were people that asked us, "Well, why would you do this? Why were you guys putting your family through this?"
But we wanted to be able to have a story. You know, that's the line of having a story instead of a secret that she's part of just who we are. This was the gift that had been given to us, a hard gift for sure. But even her name, a pearl is something that's crafted in adversity. It's hard; it's ugly on the outside, but then there's a treasure that's found in there, too.
Jim: When that doctor walked back into the room after leaving you to discuss your options and you told him, "We're gonna move ahead," how did he respond?
Laura: He said, "I'm sorry."
Jim: "I'm sorry."
Laura: And I don't even think he said we needed to see him again. We could just see our regular OB if I wanted to and "I'm sorry" and left the room.
Jim: Yeah. Let me ask you this and it can apply to a lot of different circumstances. Today we're talking about the loss of a baby. But in this tragedy, giving birth to a child who shortly thereafter passed away, did you feel close to God or far from God? And did you feel like He was teaching you something in the process? Or were you just feeling pain?
Josh: Both, I think you know, grief takes on both. I think that experience, you know, she lived for about an hour and in the delivery room and I speak for Laura; that was probably the closest we felt to Heaven. Our pastor was there and some close family and just the peace in the room was something, you know, we can't articulate today. But hours after that, a lot of anger, a lot of anger, frustration. You know, as a man, I want to fix it. I couldn't—
Josh: --fix this. There's nothin' to fix here. And honestly, we struggled, I mean, on and off for months and years, even with our faith and why would this happen to us? And you know, we haven't done anything but try to follow God and do the best and how could this happen to us? And how could He give this to us?
Jim: Let me ask you this because a lot of people think of their relationship with the Lord as a quid pro quo. If I read the Word and do devotions with the family and live a good life, Lord, You'll reward me and bless me. But that's not the equation, is it?
Laura: No, it is not. It's not. I's not at all because I think that a part of it just go back to, "God, You're good, no matter what happens to us and painful [things]." Yeah, so I went back, as we were just talking about this and read through some old journal entries of when we first found out and thinking, oh, my gosh, it's so raw. And I think we were stripped down to just nothing, just on our faces of, I don't even know if I can get out of bed today. Or I need some help. Please help us.
And I think like Josh said, too, it did ebb and flow, that sadness, the anger, drawing so close to Him. There's you know, certain songs that came out that [were] the only song[s] we could ever, ever even listen to sometimes is, okay, God, we're gonna choose to still stand and I know You're gonna carry us. I know You're gonna put hope in our hearts, but the questions, yes, were there, for sure of, why?Why are we having to walk through this?
And I think as it evolves, you start to find out the answer why, why we're going through this, why we were the ones that went through this. And I don't know if I would say that God was teaching us something, 'cause He's not punitive. He's not up there telling us, oh, "I'm gonna show those Huene's. [Let's] take this way, let's take something away from them," 'cause that's not how He is. He loves us. He loves us.
Jim: Well, and I would say that, that idea of the broken world is real.
Laura: It's real.
Jim: This isn't want God intended when He created us but we live in a fallen world, where it's gnarled and it's not as He intended. And we've got to realize that.Josh, you said something I want to come back to which was that anger, that sense of anger. That reality and that realness is important for people to hear when they are wounded, that God is big enough to take that blow. He hears your heart. He knows the pain. He experienced it as He walked this earth, whether that was His friend, Lazarus, and how people were responding to His death. And it talks about God weeping, you know, how the Lord wept in that moment.Talk about that process and how long did it take for you and for you to come to grips with that, where it moved from anger to understanding, to re-embrace of love for Him?
Josh: Yeah, it's been quite a journey to be honest. Honestly, we're 10 years out and we're still working through that, 'cause you know, you feel violated with your trust, just like you trust a person. You know, we trusted God and for me, I just felt violated, like someone just took away that trust. And trust is earned and trust takes time.
And I think for us, it was months and years to be honest. I mean, you know, it's hard as a husband to watch your mother of your children, your wife go through that anguish, just the raw emotion and just the raw grief. It's challenging and so, you know, you want to fix it or you want to blame someone for it and I blamed God at times. I'm like, "God, you know, why'd You choose us to do this? You know, this isn't right." And so, I felt like He betrayed my trust and that was just my selfishness of trying to make sense of the situation.
But ultimately, it's just time and I think it was time of just Laura and I healing our relationship. It's with our children, trying to teach our children through it and our 5- and 6-year-old. He struggled. He didn't understand and it's hard to articulate to a 5-year-old how to work through grief like that. And so, I think, you know, and it was our intentionality of staying plugged into church as best we could, 'cause there's a lot of Sundays we didn't want to go to church.
Jim: I'm sure.
Josh: And we didn't go to church a lot of Sundays. We just chose to stay at home with our small family and just be together and spend time together. So, you know, as we slowly trusted to allow our hearts to be healed through church or through family members or just with our own time with God, we spent a lot of time listening to songs on the radio and that's all I could do for months.
Jim: Oh, my goodness.
Josh: You know, we had one or two songs and I didn't want to hear, you know, anything else. I just wanted to hear those songs, 'cause that's all I could process. That's all I could allow God to sneak back into my heart, because I dealt with that anger and that frustration.
Jim: Well, and I appreciate the honesty about how to deal with it with your other kids, some of whom were a little older, but still trying to figure out what's up with mom and dad? Why is mom bursting into tears, I'm sure.And what's goin' on, you guys? I mean, you gotta communicate with them and understand where they're at emotionally.
Jim: Two words that really trouble me as I look at them and that is the perinatal hospice. Those are two words that shouldn't go together when we think of a good place—
Jim: --a peaceful place, a God-ordained place. Perinatal hospice just, you know, the fact that a child is gonna die, but you have a ministry, String of Pearls, which is a great play on Pearl's name. Talk about what you're trying to accomplish and what your goal is for the ministry.
Laura: Well, I think for us, there was nothing available for us when we were going through this of trying to figure out what it looked like to make a plan and what it looked like to make funeral arrangements while you were still pregnant and walking into a mortuary and picking things out while you have a baby that's alive and kicking in your belly. It just doesn't make any sense. But we did it. We worked through that and after Pearl was born and walking through that and I realized what we had done actually had a name.
Laura: Two words that do not go together, like Jim just said, but it's a beautiful concept. It's not a place. I think that's a different way to look at it. Perinatal hospice is not a place. It's really a way of thinking, because the mom is that beautiful hospice that's carrying that baby. It's a walking hospice for that baby. The mom is giving everything that baby needs and parenting through that process.
I had four months to parent Pearl after we got her diagnosis and I was her mom and did everything. We went to the park. We had ice cream, all those things and that's what perinatal hospice empowers these families to do, to give them another alternative besides going to take care of the pregnancy, ending it early, but to empower them to make decisions to parent their baby while they're still here.
Jim: Yeah. You know, you talked about that hour with Pearl and the peace that you felt and the presence of the Holy Spirit. Describe it a little more. What was that hour like, to be a mom of this little girl?
Laura: You could hear the brush of angel wings in that room because that verse that talks about, we are surrounded by a great cloud of witnesses, I'm certain that that's what was in our room in that moment. It was quiet, the quietest we've ever had, of course, for a delivery. We got to be all by ourselves and everybody had left and it was just the three of us as we were able to hand her back to Jesus. We knew, but we had the gift of time with her in those moments, too. We thanked her for coming. We told her we loved her and memorized every little detail. She was our only baby with hair. She had her daddy's black, thick curly hair. We gave her a terrible haircut to bring some little black locks of hair home with us.
Josh: Yeah, I think it was time stood still, but the most interesting hour of my life. I just truly felt like God's presence was there and again, it's hard to articulate it, except it just felt like a timeout and just life had been paused for a few moments. And I think it was God's gift for us to be with us for a few moments.
Jim: That's amazing and what a powerful moment. We're talking to people right now who are hurting and grieving and maybe not over yet from the loss of a child, but you've experienced some difficult pain and doubts about God, like we've described today. If so, please contact us here at Focus on the Family. We are friends for you. We have counselors who could talk with you, pray with you, help provide a biblical perspective as you work through the grieving process. We're here for you and we have many, many resources that can help you with whatever you're facing.
John: Our number is 800-232-6459; 800-A-FAMILY and if you'd like to speak to one of our counselors, please know that we'll have to ask you for contact information so they can get back with you.
Jim: This story from the Huene's represents one of many that we hear here at Focus on the Family. The families that contact us are looking for practical help and hope, maybe because of a difficult marriage or a parenting challenge in their home. They need to connect with someone who will encourage them and remind them of God's grace and love and a biblical direction. When you donate to Focus on the Family, you empower us to respond to these folks who need help on Christ's behalf. But we can't do this ministry without your help. Our financial need is especially important right now during the summer months, which tend to be lean. We are experiencing a budget shortfall of about $3 million and I hope we can count on you to help those in need.
Laura and Josh, let me say thank you so very much for sharing your story with us, for talkin' about your grief and pain in a way that will touch so many other people, giving them the opportunity to heal and you know, that takes a lot of courage. Thanks for bein' with us.
Laura: Thank you.
John: Well, what a great visit this has been and I hope your heart was touched by the Huene's difficult, but very inspiring story and that you'll help us support hurting families who hear these programs and need our help. You can donate at www.focusonthefamily.com/radio or when you call 800-A-FAMILY. And when you get in touch, ask about our follow-up resource on this difficult subject. It's a book written by former broadcast guest, Angie Smith. It's called I Will Carry You, which recounts their family's challenging journey in losing a precious child.
Now if you're able to make a generous donation of any amount today, we'll send a complimentary copy of Angie's book to you as our way of saying thanks and putting a great tool in your hands for someone in your sphere of influence who needs that kind of encouragement.
Our program was provided by Focus on the Family and on behalf of Jim Daly and the entire team, thanks for listening. I'm John Fuller, inviting you back next time, as we once again, help you and your family thrive.
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Josh and Laura HueneView Bio
When Laura Huene and her husband, Josh, learned their fourth child, Pearl, would not survive outside the womb, they made the courageous decision to carry the baby to term and celebrate Pearl's brief life. Now, Laura offers counseling, encouragement and resources to other parents dealing with a similar loss through her ministry, String of Pearls.