Search for tag: "hernia"

Interviewer: Will a hernia go away on its own? Dr. Rodney Barker is a hernia expert. So do hernias eventually heal without surgery?

Dr. Barker: No, they don't. It's a defect in the abdominal wall. It's a mechanical issue, and it needs a mechanical fix. Physical therapy, medication won't do anything for it.

Interviewer: If a person has a hernia, should they go in and get it fixed right away?

Dr. Barker: Not necessarily right away. They should have it checked and make sure that's what it is and it's not some other diagnosis. The repair will be a discussion between them and the surgeon as to when it's most desirable to do it.

Interviewer: And sometimes, if somebody notices a small bump that's not giving them any problem that's a hernia, do you ever take a wait-and-see approach?

Dr. Barker: We do. Again, we want to confirm that small bump is a hernia and not an enlarged lymph node or something else. But watchful waiting is an appropriate response.

updated: October 28, 2021
originally published: August 21, 2019

Announcer: Is it bad enough to go to the emergency room, or isn't it? You're listening to ER or Not on The Scope.

Interviewer: All right, let's see you how you do today. ER or Not with emergency room physician Dr. Troy Madsen. I'm going to give you the scenario. You decide whether it's worth going to the ER or not. Here is the situation, Dr. Madsen. You're helping some friends move some furniture. You lift a particularly heavy chest of drawers. You feel a little bit of a pop in your abdomen area. Now there's, like, a protrusion down there. ER or not?

Dr. Madsen: Well, this is something, I think we've all done it sometimes, lifted something, you know, these moving scenarios, you're often trying to show off, you know, your strength, trying to carry some piano down the stairs. And as you're doing it, you say to yourself, "This was a really bad idea." But then, when something pops out in your belly . . .

Interviewer: "This was a really bad idea."

Dr. Madsen: Then you think, "This was a really bad idea." So it's not uncommon. We'll see people in the ER with hernias.

Interviewer: That's what that is.

Dr. Madsen: That's what it is. So a hernia is a tear in the lining of the abdomen. And when that muscle tissue tears there, and those fibers tear, then some of the contents of the abdomen can kind of bulge out. So that's intestines that are kind of sticking out there that you're feeling beneath the skin. You've got this bulge, often around your belly button. A lot of people experience it in their groin as well, particularly men. When you had your physical exam and the doctor touched you and said, "Turn your head and cough," he was checking for a hernia. That's what we're doing there.

Interviewer: Just kind of making sure you didn't have one and didn't realize it.

Dr. Madsen: Exactly. Just a small one, something like that. So that's exactly what a hernia is, it's a defect in the wall, but it is not a reason to rush to the ER.

Interviewer: What are you talking about? My insides are coming out. It's absolutely a reason.

Dr. Madsen: Exactly. It's scary. The one time you'd want to rush to the ER would be if something changes with that hernia. And most people know they have hernias. It's happened to them. They've had hernias for years, and they know it's there and they just kind of deal with it. You can get it surgically repaired, but it becomes an emergency if it becomes what's called an incarcerated hernia. And that's a strangulated hernia.

So that's when you get enough of this stuff outside of the abdomen that the blood supply gets cut off to it. You try and touch it, it hurts, it's firm. You try and push it back inside, which you should easily be able to do, and it won't go back in. That becomes a very big deal, and it's definitely a reason to get to the ER. Often in the cases, we have to get these patients to the operating room pretty quickly to get this treated.

Interviewer: Okay, so just to be square here, I'm moving furniture or I'm lifting weights and I get that pop-out. Just because it's not a reason to go to the ER, I should go see my doctor.

Dr. Madsen: Yes, you should. Yeah, because it could get worse.

Interviewer: But it's not something I have to do, like, then.

Dr. Madsen: It's not.

Interviewer: In the next couple of days. Unless, of course, it becomes painful to touch and I can't push it back in, then a trip to the ER is necessary.

Dr. Madsen: That's right. Most people with hernias live with them for years, but if something changes, you'll know it. Get to the ER.

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Interviewer: Dr. Stephen Jay Fenton is a pediatric surgeon and also an expert in congenital diaphragmatic hernia. So, most of the time, it's diagnosed before the woman has given birth. So, this diagnosis comes in, what are some considerations that the woman, the mother, the family are going to have to do at this point?

Dr. Fenton: Once this woman has diagnosis they need to be referred to a maternal fetal medicine physician, so someone who deals with high risk pregnancies. And one of the things associated with that is that they need to be followed closely during their pregnancy. One is to ensure the safe delivery of the child and then also in preparation as far as what will happen once the child is born.

I think it's important for the mother to know that this is something that will require treatment for a long time after the child is born. So I typically would say three, four, to six months afterwards, that child will need to be in hospital that takes care of these types of kids. And so sometimes it might require relocation or making sure they have a support system away from their house. For example, if they live quite a bit away from the children's hospital that deals with this specialty, they may need to start thinking about the Ronald McDonald House or finding some other place that they can live.

Interviewer: Wow, so this diagnosis is a serious thing.

Dr. Fenton: Yeah, I mean over the past 10 to 20 years the survival rate has improved, but it still is one of those diseases that takes a lot as far as to treat the child once they're born and then afterwards to help the child continue to grow.

Interviewer: What's the conversation that you have with these families? Take me through that conversation, some of their concerns, their questions, the things that you tell them that are important to consider.

Dr. Fenton: So, after getting past the basic questions of what is a diaphragmatic hernia and how is it treated, the things that I really focus on are we need to find out a little bit more about the child. So, one of the things that we'll get when they come to our office is what we call predictive or prognostic predictors.

So, a lot of times they will have already undergone ultrasounds, several ultrasounds, to look further at the child. One of which is of the heart, so a fetal echocardiogram. We want to know whether the child has a congenital heart disease as well because that does complicate things when the child has not only a diaphragmatic hernia, but has congenital heart disease as well. They are at a much higher risk of not surviving.

And it also limits some of the things we can do, especially as far as the ECMO or the heart lung bypass, if the child has a structural heart defect we can't put them on ECMO. So, the families need to know that.

Additionally we want to know what their chances of going on ECMO are and what their survival ability is. So, we look at these different things. One is the lung to head ratio, which is obtained by the ultrasound. Then the other is the total lung volume which can be obtained by the MRI. And those, depending on what the lungs look like, so the ratio of the lungs to the heads and/or the observe to expect of total lung volumes.

We can give parents the percentage of whether their child is going to require ECMO support and/or what their survivability is. And so the parents, when I talk to them, I almost talk to them much more about the support that the child will receive before and after repair, than the repair itself. Because the repair is really a step and only one of many steps in the care of the kid once he's born.

Interviewer: Wow. So, how do you help parents take all this information that you just talked about, head-lung ratios, and how do you make them make sense of what they should do at that point?

Dr. Fenton: Well, I think it's hard, especially for the initial visit, because a lot of information is given and so we will talk to them upfront and then we'll see them once they come into the hospital again to give birth. And talk to them once the child is born as well, and we can gauge. Obviously all of these are predictive.

They're not definitive and so it's after the child is born that we see how they're doing, that we kind of give them a little bit more of a definitive plan as to whether we feel like the child's going to need ECMO or whether we feel like when the child can be repaired. And some of the consequences as far as neurologic cardiac long-term pulmonary support. A lot of times we can't necessarily give them that until we are in the midst of taking care of the child.

Interviewer: What options do parents have at this point?

Dr. Fenton: I honestly refer my patients out to websites as well. "I feel like I've given you a lot of information. We want you to know more." There are support groups, CHERUBS is one, as far as the parents can Google. I also had them look at WebMD. I've actually found most parents to be very well informed when they come in even to the prenatal interview. So the very first kind of clinic visit that we have, I found that most parents who come in have already read up quite a bit about it.

Interviewer: Yeah, because they were told about the diagnosis and they're very curious and want to know.

Dr. Fenton: Exactly. And I think that helps. I mean having the parents be informed already about what it is and having specific questions as far as okay, so, tell me about ECMO. Tell me about reflux, and tell me about when you're going to do the repair and what the repair options are. It helps with the conversation already.

Interviewer Do some parents at this point after they get this information choose not to continue the pregnancy if they think... if you think I should say, it's going to be really bad?

Dr. Fenton: Some do. Yeah. I mean some will discuss options of whether to be able to continue the pregnancy or not. Obviously depending on the gestational age of the child, that might not be an option anymore. More often what is talked about is palliative care. So, meaning how aggressive to treat the child afterwards and how much should be pursued.

I would tell you that most parents say, "I want everything done. We'll go forward and certainly want to help the child, after they're born in whatever way is possible." But there are some times where we can't do that. And so I think it's important to have that discussion before, of what are the limits and the possibility of needing to do either palliation immediately after the child is born. And/or when have we exhausted all medical means to help this child.

Interviewer: So, after a diagnosis of CDH, can a child live a normal life after you've done what you needed to do to rehabilitate?

Dr. Fenton: Yes, I think that's the key. We've done what we needed to do rehabilitate or to treat the child, and obviously there is a pretty high mortality associated with CDH now. It has improved greatly over the past two decades. But it's still a serious disorder. There are some kids that have lungs that are so small and so underdeveloped that we're not able to treat those.

Now, the children that we are able to treat, they can go on and live a very productive lives. Some of them may have some challenges secondary to the treatment themselves. They might need oxygen support. They might not be able to exert themselves as much as a consequence of treating their underdeveloped lungs. But most of them can go on and live great lives even if they require some support.

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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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Interviewer: Congenital diaphragmatic hernia, what is it? What causes it and what can you do about it? We'll cover the basics of this terrible birth defect next on The Scope.

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Interviewer: Congenital diaphragmatic hernia, also known as CDH. You might not have ever heard of it but it's likely more common than you thought. It's estimated about 1 in 3,000 children are born with it, which puts it with diseases you've heard about like spina bifida, which is one in 1,000 or even cystic fibrosis, which is about the same, one in every 3,000. Dr. Stephen Jay Fenton, the pediatric surgeon is also an expert in congenital diaphragmatic hernia. Thanks for taking time to talk about this somewhat unknown disease. Is that a fair assessment?

Dr. Fenton: It's obviously well known to us. We take care of it often but I think maybe some of it is secondary to the survivability. I mean it isn't something where kids will live as long as some of the kids with cystic fibrosis. So there are not as many families out there that are dealing with these types of kids. There is about 40 percent to 50 percent mortality rate associated right off the bat with congenital diaphragmatic hernia.

So now the children that survive, most of them will go on and live normal lives as a kid but it's something that's dealt with in the neonatal period primarily and not later on in life and so that might bring a little less notoriety to it.

As far as cystic fibrosis there's a lot more kids although it's one in 3,000. There are a lot more kids with cystic fibrosis kind of walking around out there. Some of it may be who is the champion for it, whether there's celebrities that are champions for cystic fibrosis or whatnot. I mean I think that might play a part as well.

Interviewer: Yeah. So a pregnant woman is told her baby as CDH. What does that mean for the child?

Dr. Fenton: First of all, we should just kind of talk about what it is which is basically a hole in the diaphragm. And the diaphragm is the muscle between the abdomen and the chest. And what happens is this hole develops early in the development of the child and causes bowel or solid organs to herniate up into the chest.

When it does this it arrests the lung in an earlier stage of development. And so what ultimately happens is not a matter of the intestines or liver, let's say, being up into the chest but it's actually result of very hypoplastic or underdeveloped lungs as well as thickened pulmonary arteries. And that's really the big consequence of a CDH.

Interviewer: I see. It's not a physical hole you see though in the stomach. It's all internal, right?

Dr. Fenton: It's all internal. Yeah, you would never see it on the child. The only thing you really see on the child is that their belly looks really, really flat and it looks much flatter than normal because some of their abdominal contents were up in the chest.

Interviewer: So if I'm understanding correctly what happens is because of this membrane is not there, the organs move up and is that what stunts the growth of the lungs?

Dr. Fenton: Exactly.

Interviewer: There's just no space for them to grow.

Dr. Fenton: That's exactly right.

Interviewer: Is this something that can be detected before the woman gives birth?

Dr. Fenton: Oh, yes. Yeah. The great majority of these are detected prenatally, during the screening ultrasound let's say. So ultrasound is very good at detecting the herniation.

Interviewer: So give me an idea of the degrees then. How many children are born and it's not super serious. It's something that can be... or is it always super serious?

Dr. Fenton: Yeah. Very, very rarely. Every now and then I would say we get a child maybe one or two, every couple of years that come in and are great. Most kids though come in with a pretty big defect and because of the size of the defect they have very underdeveloped lungs and have something called pulmonary hypertension which is also a consequence of the underdevelopment of the lungs and they're sick.

They require ventilatory support so they need to be on a ventilator. They require medications sometimes to help with their blood pressure and how well their heart is working. And they also require medications to try and help open up the pulmonary arteries in order to reduce what we call pulmonary hypertension which is really something that we did as challenge immediately after birth.

Interviewer: As a surgeon then, what do you do to try to solve this problem?

Dr. Fenton: Well, the surgery is a major step but it's not the first step as far as these are concerned. Once the kids are born, the key is really to stabilize them from a medical standpoint. So we want to try and help them breath, but we want to do it in a way that won't cause long term damage to the lungs. So we want to kind of do this gentle ventilation if possible and sometimes that can be very difficult because they require quite a bit of support.

We also want to make sure that we're supporting them from a cardiac standpoint. So we need to make sure that their heart is working well, that their blood pressure is normal. And then we need to work them up for any further anomalies. And then once they've stabilized their pulmonary hypertension is under control, we feel like they've been stable for at least 24 hours then we repair them. And this does require surgery, so we do make an incision in the abdomen and we go in and we go find the hole and there's really kind of three options that we can do to fix it.

So one is the hole really isn't that big and we're able to bring the two edges together without tension. When we can do that, then we just close it what we say primarily. But most of the time the holes are bigger than that and we can't close it without tension. So in that case we can either put a synthetic patch in, something that has called it a dual mesh. It has cortex on it so it protects the lung on one side and kind of allows tissue to grow into it on the other side. And that will allow us to close the hole without tension.

One of the things that we do here at Primary's is what we call a muscle flap. The abdominal is made of three muscles to the side and we actually take the internal-most muscle and rotate it inward and sew it in. So it's what we call a biologic fix, meaning that it's actually part of the baby that is helping repair the hole. And we like that because we found that it reduces the risk of it coming back. So reduces the risk of recurrence and then it also grows with the child.

Interviewer: Okay. So after the repair is done, the organs are back where they belong. What's the recovery process at that point?

Dr. Fenton: So it's still quite a bit. Now I usually tell parents they should plan on their child being in the hospital for three to four months.

Interviewer: Will the lungs ever fully develop properly?

Dr. Fenton: Yeah. Well the lungs actually continue to grow until the child is around eight years of age. So with support, and if we've been able to use gentle techniques to the point where the lungs aren't damaged, then they should be able to grow to the point where the child can live a pretty normal life. Now some of them are so severe that they will have some pulmonary consequences later on in life. They might still require some oxygen. They might not be able to exert themselves as much without being tired.

Now I think something that is important is that these kids are kids that should be followed for a long period of time. So they will still have some consequences of pulmonary hypertension. So it's not a child that after their repair and after they leave the hospital, we don't see. They're actually children that are still followed by specialists.

Interviewer: Do you have any thoughts for parents or families that found out that this is a birth defect that's in their family?

Dr. Fenton: I guess the biggest thing to say is that they can be well supported. Even though it's not known commonly throughout the community, it is something that we treat very often at Primary Children's Hospital. There are a lot of specialists that deal with this not just from the surgical standpoint but from the lung standpoint, from the neonatal standpoint, etcetera. And they can come and see these specialists and get the support, that information that they need that will help them not only through the difficult time prenatally but also through the time immediately after birth and then throughout the child.

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