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An Unborn Baby with CDH: “The Loneliest Diagnosis”

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An Unborn Baby with CDH: “The Loneliest Diagnosis”

Mar 22, 2015
Josh Hensley had not only one, but two babies born with congenital diaphragmatic hernia (CDH), a birth defect where the gut and liver protrude into the chest cavity. He talks about the “cloud of uncertainty” that surrounds parents who just learned their child would be born with this devastating defect. Josh shares his story and gives advice and resources for support for parents that just learned of their child’s CDH diagnosis.

Episode Transcript

In this episode of The Scope, Josh Hensley, twice a father of a newborn diagnosed with congenital diaphragmatic hernia (CDH) tells his story. Listen to the interview above or read the transcript below.


Interviewer: Josh Hensley was told not once, but twice in his life that his newborn child had a birth defect called congenital diaphragmatic hernia, also referred to as CDH. Since then, he's brought awareness to this defect to help other parents with children with this same disease understand a little bit more about it. Josh, thank you for telling your story today.

Josh: Oh, you're welcome, my pleasure to be here.

Interviewer: Josh, you've referred to the diagnosis of congenital diaphragmatic hernia a very lonely diagnosis. What do you mean by that?

Josh: So when you get the diagnosis of congenital diaphragmatic hernia you've never heard of it before. Your family members have never heard of it before. More often than not, your doctor's never heard of it before. So it creates this feeling of it's completely unknown. You see those news stories of, oh, this condition happens in once in three million people. It's not that rare, but it feels that way. And nobody understands what it is; nobody understands what's going to happen. And it just leaves you in this cloud of uncertainty because nobody knows. Nobody knows what to tell you.

Interviewer: What do you do, how do you get through that? So you've been through it twice.

Josh: Honestly, being young and naive, kind of feeling invincible . . .

Interviewer: Yeah, sure.

Josh: With our first child it was kind of a, well, if we don't accept the alternative it's not a possibility, so we're just going to always tell ourselves that this is what's going to happen and that's what is going to happen, and that didn't happen.

Interviewer: And the alternative being that your child wouldn't pass away.

Josh: Right.

Interviewer: Yeah.

Josh: Right. And so, you know, it was . . .

Interviewer: Would you change how you would approach that the second time?

Josh: The second time we were more optimistically cautious, but again we adopted the attitude of, well the only thing we can do is say, this is going to be different. You know, We're not going to lose two children. And that's what got us through. And we did not have a support system. We didn't find any awareness groups or support systems until after our second daughter passed away.

And had we had Cherubs while we were dealing with the diagnosis, while we were dealing with course of care, I do think things would've been a lot different because we would've had people to talk to, we would've had an understanding, we would've been able to rely on their experiences. And we didn't have any of that, so we did the best we could. And our way of handling it was, well, if we just have unwavering faith that everything will be okay, everything's going to be okay. And it was, that's owed to us. We had one child pass away. We're fine. Not the case.

Interviewer: So it wasn't until after your second child passed away that you found out there are support resources. And you are a fantastic support resource. What would you say to somebody that just got this diagnosis? What advice would you give them, what information, what would you tell them right now that you wish somebody would've done for you?

Josh: That everything will be okay. Regardless of the outcome, you can't focus on the negative. There are people who understand the process. And if your child passes away, if your child is critically ill for years and years and years, or if your child's 100% healthy after you're done, you still live with that trauma of the diagnosis, of the ICU stay. And everybody gets that, regardless of the outcome, regardless of the end of the journey, we all share that in common. So reach out, share your worries, share your concerns. Ask what other people did. And if you don't want advice, just say, I need to get this off my chest. We'll all listen because we all get it. So you don't have to be alone.

Interviewer: So if you would've known that there was Cherubs, for example, is the organization you're involved in. If you'd have know there was an organization that offers support of other people that are going through the same thing, you would've reached out to them at that point?

Josh: Absolutely. My wife and I have traveled to San Francisco, Boston. Washington D.C., Dublin, Ireland for different conferences and have met dozens and dozens and dozens of other families who have this diagnosis. And most of them, when we met them, had never met another family who had had a CDH diagnosis. And to actually have that in person, let alone the online presence, but to actually physically meet somebody that's an instant connection.

Interviewer: Yeah. Somebody you don't have to explain it to.

Josh: Right, right, they get everything. You know, when I say, oh, yeah, so in the ICU when this happened, and they're like, oh, yeah. And I don't have to go through a 20-minute explanation of what all that means.

Interviewer: Yeah, exactly. What other advice would you have for a family that just received this diagnosis to help get through this process?

Josh: Personally, I would say stick it out. You never know what the future may bring. It may seem pretty bleak when you hear a 50% mortality rate. There are some scary things in there. I look at my experience. Our first daughter only survived 14 hours before she passed away. We get hit with it a second time and, of course, we thought about abortion and let's forego all of the pain and everything else. But personally, my wife and I don't believe in that. If people do, to each their own. This is just my perspective.

But then I look at it, if we would've done that, we wouldn't have had 15 months with our second daughter. We would've never had the wonderful opportunities that we had. And maybe she's still alive in a different course of circumstances and we would've never known. And living with the uncertainty . . . just hold out some faith, hold out some hope. I know a lot of families that have had two CDH children, some both survivors, some both non-survivors like myself, one non-survivor, one survivor. And the thing that I get from most of them is you can't give up hope because the outcomes are so different.

You never know what's going to happen, and why would you not even give yourself the opportunity to experience being a parent? And the pain if it doesn't work out, the pain is pretty bad. But for myself and my wife, we determined that the pain of not knowing would've been worse. And I think a lot of people feel hopeless and a lot of despair, but know that there's just a big of chance that your child survives and thrives as there is that they don't. And so just focus on the positive to get yourself through.

Interviewer: In this very uncommon disease, are there some common threads of things that families go through?

Josh: When you have a child in the ICU with CDH, you have the sickest child in the hospital. There's nobody worse off than a CDH child. And that's every single one of them, regardless of outcome, that is how it all starts. And so that's the common thread. We understand the journey, even though the outcome may be different.

Interviewer: Yeah. Questions, concerns that just about every parent has when they get this diagnosis? Something that you wish somebody would've clarified for you?

Josh: I wish somebody would've told me it could happen a second time, although as rare as it is. You have the 1 in about 2,500, 3,000 chance of it occurring. The chances of that recurring again are 2% of that number. So we're literally dealing with thousandths of a percent.

Interviewer: But then even after that second child developed it and passed away, you and your wife decided to have another baby.

Josh: Yeah, we've had two more.

Interviewer: So I think that's a good question for somebody who has had a diagnosis of this and that child has passed away. Where do you find the bravery to even go down that road again?

Josh: For us we just knew that we needed to have children. We've always known, we've always felt that that was something we needed to do. And even after having two, we just figured nothing worse could happen to us than what has already happened, I guess. And we have to push forward and we can't live our lives in fear of what has happened, but only live with the hope of what may happen. And we've had two children that have no problems at all.

Interviewer: Yeah. Any final thoughts on the loneliness of the diagnosis of CDH?

Josh: Just know it's not as lonely as it sounds. There are a lot of people out there who understand, who get it, who are willing to talk 24 hours a day, seven days a week. At Cherubs, we have parents who are on-call, available all the time, survivors, non-survivors. We have social media groups, we have all kinds of avenues for you to reach out and get whatever level of support that you need. If you want advice, if you want somebody to actually talk to you, we'll do that. If you just want to tell your story so somebody will listen, we'll do that too because we get it. We've all been there. You don't have to be lonely. You don't have to face it on your own.

And that's the one of the biggest things we do is, we want people to know, what it's meant for us in finding other people has made such a huge difference in how we've coped. Even though it was kind of the aftermath of everything, it still made a huge difference and impact in our lives. And I can see the difference that we've made in other people's lives by sharing our experience.

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