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Support for CDH Parents

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Support for CDH Parents

Mar 30, 2015

Josh Hensley had two children with congenital diaphragmatic hernia (CDH), a devastating birth defect. Although CDH isn’t uncommon, very little is known about it. He talks about the difficulty parents of CDH children have with finding support and even information from doctors about the defect. Josh speaks about Cherubs, an organization that offers support and help for parents and families dealing with CDH.

Episode Transcript

Announcer: Medical news and research from University Utah physicians and specialists you can use for happier and healthier life. You're listening to The Scope.

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

Josh: You're welcome. My pleasure to be here.

Interviewer: You had a lot of frustration, from what I understand, during this process. Tell me a little bit about that. Just lack of support, lack of information, lack of knowledge.

Josh: Yeah. So if you're not dealing with pediatric surgeons or specialists, neonatologists, people who deal in more severe cases, nobody knows. Our pediatrician did a really good job of informing himself so he could provide us good care, but there were multiple times we went to the doctor's office and he wasn't there. We saw another doctor and I knew volumes more about our daughter's condition and the side effects of her condition than the doctor did. And it's not uncommon. I've heard from a lot of parents. I had one parent tell me, "Oh, the doctor went back and he grabbed his medical book and opened it and read to us out of his medical journal the description of the disease.î

Interviewer: So, we talk about cystic fibrosis, every doctor knows about that.

Josh: So does Joe Everybody.

Interviewer: But this is just as common, one in 3000 children, but yet there's so little knowledge about it. Why is that?

Josh: I think part of the reason, for the most part, once our kids go home from the hospital and are considered what you would say is stable, you can look at a kid who has CDH and never know that there was anything wrong with them because the long-lasting effects are on the inside. There's no real external manifestation that they had CDH. If you didn't see their scars, you wouldn't know.

Interviewer: How do you bring awareness to the issue given the fact that it is not an externally manifesting condition?

Josh: One of the campaigns that we do is called Save the Cherubs. And so we have kids who are survivors. We buy wings and have them wear wings. Children who are non-survivors are just the wings and we have pictures at all kinds of landmarks throughout United States and throughout the world, really. Just saying, ìHere is a set of wings at the Eiffel Tower. Be aware.î It's a way to give an outward manifestation to an inward . . .

Interviewer: Gotcha. Yeah.

Josh: We do all kinds of events. We do a lot of social media campaigns. We do a lot of fundraisers. We go to Washington D.C and lobby with Congress to get awareness and funding. But it's really a mom and pop grassroots organization of just family members that volunteer their own time and their own travel expenses just because we understand each other better than anyone else could ever understand us.

Interviewer: How will that translate into money, do you think, the awareness? What's the strategy there?

Josh: So in meeting with congressional aids, they said the reason that cystic fibrosis gets $79 million a year from NIH is because 20 years ago cystic fibrosis parents were sitting in this chair in this office, talking to somebody just like me. And they kept coming back and they kept coming back and they kept coming back. And so that's what it takes is to continually make enough noise until you can't be ignored and everybody realizes, "Hey, this is a pretty serious event. I may not have known about I, but I do know about it now. And, yeah, this is probably something we should look into because that type of mortality rate, in my opinion, in this day and age, is unacceptable.î

Interviewer: What do you hope to get out of all your work? I know you've dedicated, like you said, a lot of your own personal time. This has become your mission, a lot of your own money. At the end of the day, what do you hope happens? What's the payoff?

Josh: The payoff is to let parents who get this diagnosis know that they're not alone, that they don't have to face it by themselves. They don't get a lot of support from the medical community; they don't get a lot of support from family members. Especially in my situation, if your child dies, even your parents, who are the most loving and caring people in the world, get to a point where they don't want to hear about it anymore.

Interviewer: It's tough.

Josh: And it's human nature, and I understand and it's not their fault, but there is a large group of us out there that get it. We understand. We'll never tell you to be quiet. We'll encourage you to talk about it. So the main thing, I just want people to know when they get this diagnosis that there is a large support network. That there is help, there is hope. There are people who will talk to you about it; there are people who will get out of their way to do what they can to support you. And, ultimately, I'd like to find some way to prevent this from happening because nobody should have to bury their child. And, ultimately, I'd like to have a 0% mortality rate with CDH.

Interviewer: What are some of the resources you'd recommend to those families?

Josh: I work for a charity called Cherubs. We've been around; we just celebrated our 20th anniversary. It was started by a mom whose son passed away at six and a half years of age due to complications of CDH. And we do conferences every year. We have fundraisers. That's the group I go into Washington D.C with to lobby. And we have 5000 families worldwide in our membership, and that's a small fraction of the actual CDH community. But it is the largest charity that does the most awareness activities, the most research funding and where you'll find the largest group of people who get what you're going through.

Jose: For that social support.

Josh: Yes.

Interviewer: Gotcha. Any final thoughts, anything I forgot to ask you or anything you feel compelled to say?

Josh: I've been dealing with the aftermath of CDH for eight years and a lot of people say, "Oh, eight years? Aren't you going to move on?" No, I won't move on because I will not give up. I will not stop. This is my life calling and I will do whatever I can because I feel not only do I owe it to my daughters, who both passed away, I owe it to every child

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