West Nile Virus & Fertility Preservation – PediaCast 413
- Dr Leena Nahata and Stacy Whiteside visit the studio as we consider fertility preservation. Many children and teens face disease and medical treatment that affects future fertility. Find out what can be done now to increase the chance of pregnancy and childbirth down the road. We also explore West Nile Virus, including the cause, symptoms, diagnosis, treatment and prevention. Be sure to tune in!
- West Nile Virus
- Fertility Preservation
- Dr Leena Nahata
Fertility and Reproductive Health Program
Nationwide Children’s Hospital
- Stacy Whiteside
Nationwide Children’s Hospital
- West Nile Virus (CDC)
- West Nile Virus (WHO)
- Fertility and Reproductive Health Program (NCH)
- AAP Clinical Report on Fertility Preservation
- Preserving Fertility in Children With Cancer (Cancer.Net)
- What is Fertility Preservation? (NIH)
- Common Sense Pregnancy & Parenting (podcast)
Announcer 1: This is PediaCast.
Announcer 2: Welcome to PediaCast, a pediatric podcast for parents. And now, direct from the campus of Nationwide Children's, here is your host, Dr. Mike.
Dr. Mike Patrick: Hello everyone, and welcome. Once again the PediaCast, it is a pediatric podcast for moms and dads. This is Dr. Mike coming to you from the campus of Nationwide Children's Hospital, we're in Columbus, Ohio. It is episode 413 for September 5th, 2018. We're calling this one, West Nile Virus & Fertility Preservation. Want to welcome all of you to the program.
Know that the two topics do not relate to one another. We have a sort of information segment for you on West Nile Virus. Kind of, public safety announcement so to speak. And then we're going to talk about fertility preservation, which is a pretty interesting thing. You know, children and teenagers often have diseases or treatments that can affect future fertility. So kids with cancer, for instance, who are going to have radiation or chemotherapy, the treatment may actually affect future fertility or there can be diseases that do that. So the question is, what can be done now before the damage is done to preserve fertility and increase the odds of pregnancy and childbirth down the road? I will consider the options for girls and boys. Really interesting stuff, especially as we consider the science of a pediatric medicine and that this is an area where it's kind of new and we're going to talk to some experts about it.
We have a couple of resident, a fertility preservation specialist here at Nationwide Children's Hospital. One is Dr. Leena Nahata, she is a Pediatric Endocrinologist with our Fertility and Reproductive Health Program here at Nationwide Children's. And then Stacey Whiteside is a nurse practitioner and serves as our Oncofertility Navigator. So we'll talk a little bit about what that is, all coming up in just a few moments. Before that interview, we're actually going to cover West Nile virus. You may have heard of this here in central Ohio. There have been some pockets of mosquitoes this summer. They have tested positive for West Nile virus, so there's been a lot of interest in exactly what is this viral illness? Where do we see it, when is it a problem, where did it come from? And then of course, what symptoms, diagnosis, treatment, and the dangers go along with West Nile virus. Also prevention. How can you prevent getting West Nile virus in the first place? So, we'll discuss that coming up shortly.
Very quickly, I just wanted to give you an update. I shared with all of you that my mother passed away back last March and it was a tough time for sure, but, she left an incredible legacy and that was the condo that she was living in she left for my daughter to be able to live in her condo. Which was fabulous because my son-in-law is a grad student, you know, their early marriage. And we took the opportunity over the summer to do some condo renovation. And one of the places where I'm on social media is Instagram. So if you look for Dr Mike or PediaCast, we've had some photo documentation of the renovation process from demolition, all the way up through and we did most of the demolition ourselves. So we were pulling out a flooring and getting appliances out and we're really kind of completely re-did things and so you can sort of follow us along on instagram and see what that's looking like. Excitement is a definitely in the air as my daughter and her husband have some new digs and that's been updated and renovated. So, this is an example of a grandmother, a really leaving a legacy for the family.
And my point with all of this is that, even when your kids grow up and get married, family remains important. And even though those of you who have little kids, let me tell you, it was not that long ago. Time flies, right? It never seems like it's very much time from when your kids are really little to when they are starting lives of their own. And then you're renovating condos for them. So anyway, my point is cherish your family at every stage. It goes by way too fast for us. Next stop is grandchildren perhaps, but we will cross that bridge too soon. Speaking of Instagram in addition to condo renovation pictures, trying to do more personal stuff on Instagram. We recently had a family vacation, went up to Alaska. We have some pictures from that. I love connecting with the audience in that way and we can see what each other is up to in our personal lives because it's not just about working or also living and being part of a family.
In addition to personal stuff on Instagram, we do give you a little bit of a peek into the studio with some pictures of our guests, as we record. And then we're also PediaCast on Facebook and Twitter. And there we really try to, in addition to let you know about our programs and the current podcast. And then some, hand-selected a podcast from past seasons as well. You'll find those periodically on Facebook and Twitter, but we also try to put some things in there. They're just interesting, you know, we curate some good content to share with all of you. So, please do connect with us. Again, Facebook and Twitter. Just some examples of the sort of things that we're sharing, a soothing adolescent angst as we get back to school. If you're a teenagers are anxious. There's some great ideas in this from a pedia blog, foreign body emergencies in kids because we all know the babies and young toddlers, put things in their mouth.
This is from the Rockland County Times. I thought it was a really a good, helpful, useful, practical story for you. And then breastfeeding beyond a year after 12 months of age from a pediatrician. Her blog is the Pediatric and Ninja. And then, some interesting news, a bedtime stimulant for ADHD. This is from a Quest for Health in Kansas City and a pediatrician, Kristen Stuppy, and she tells us about a new drug delivery system that you take at bedtime. And then it starts working the next morning for ADHD, so a stimulant that you take the night before, it's still in development. It is not quite ready for primetime, but she talks a little bit about the mechanism. And the interesting thing with this one is, sometimes kids with ADHD can be really hard to get them out of bed. The morning routine can be very difficult, because then their medicine that they take in the morning is not really kicking in until about the time they get to school.
Whereas with this new delivery system, you would take it the night before and as soon as they wake up in the morning, it is a working and helping, with the attention and concentration and impulse control and all of those things. So interesting idea and we share that with you. So just connect with us on Facebook or Twitter and you'll be able to find those kinds of resources we share others, you know, nearly daily so you can get in touch with hopefully, some practical pediatric news and stories for you. Don't forget you can suggest topics for the program. If there's something that you'd like to hear about or if you have a question for me, I'm happy to entertain listener questions. Really easy to get in touch. Just head over to pediacast.org and click on the contact link.
We are back, and we're going to start off the week with some information on West Nile virus. You may have heard of this. It was back in the late 1990s and in fact it was 1999, so we're right at the turn of the millennium when West Nile virus was first seen in the United States of America and it apparently began around the New York City area and then spread west and this particular strain of West Nile virus originated in either Europe or the Middle East, kind of in that region. And then was brought probably by airplane to the United States of America and then quickly spread again in New York City and then to distance and points west from there. It is prevalent during mosquito season because mosquitoes are what transmitted, and we'll talk more about that in a moment. And so we typically see West Nile virus primarily during mosquito season. So you know, summer and late spring, summer and early fall.
It seems that there has a little higher prevalence in late summer through early fall. So right now, is really when we would be seeing kind of a peak of activity in terms of mosquitoes and the spread of West Nile virus. It is considered now endemic in Ohio, which just means that it's widespread. You know, it's here. So we shouldn't be surprised when we hear about pockets of mosquitoes that have West Nile virus. Now, the good news is because it's endemic, unlike that first year in 1999 when pretty much nobody in the United States had immunity, there was concerned that we would see some severe disease that year because you have this population that does not have any natural protection against West Nile virus. Ends up, it wasn't as bad as we thought it could be that our immune systems did, for the most part, pretty good job of fighting off the virus.
Now we don't see as much of the disease and when, because a lot of us have immunity because it is just around and a part of our environment. Now, I mentioned that it is spread to humans primarily by mosquito bite. The reservoir for this is birds. So West Nile virus, it's primary host, are birds. And what happens is the mosquito would bite a bird and get the organism and then if it bites you then, you can get the organism. But the primary animal that the virus is trying to infect are birds, not humans. And so humans are not a natural source of this particular virus. It just happens. We cannot transmit West Nile virus with human to human contact. That always has to come from a mosquito that bit in infected animal. And again, that's most likely going to be a bird.
Other possible exposure points, lab exposure. So if someone's doing research on West Nile virus and touching blood products that contain the virus, that's a potential point of transmission. Blood transfusions, very rare that it can be transmitted from mom to baby through the placenta, but possible. But the primary way though is through mosquito bite. Now, here's the interesting thing as we think about West Nile virus, because it sounds a little exotic, and it sounds like it's dangerous and in a very small number of cases, it is. It can be very dangerous. However, our body's immune systems do a pretty good job of fighting this virus. And when we get transmitted from a mosquito, we get a pretty low viral load. There's not a lot of the virus that gets into our body. So it turns out that 80 percent of cases are asymptomatic.
You don't even know you have West Nile virus. Your immune system swoops in and takes care of the virus. You don't even develop any symptoms, but you do develop immunity. And that's how we can tell the 80 percent of cases are asymptomatic because we can test people's blood to see if you've been exposed and then ask all of those people who have evidence of exposure, “Do you remember having this collection of symptoms?” And 80 percent would say no, they don't even remember being sick with it. So if 80 percent of cases are asymptomatic, then it makes sense that about 20 percent of cases do result in symptoms and the most common symptoms of West Nile virus are going to be fever, headache, muscle aches, just malaise. You know, in our family, we call it feeling viral. You just want to lay on the couch all day and anorexia or loss of appetite. Those are the most common symptoms. You can also get a sore throat, swollen lymph nodes in the neck, and any place else actually. Vomiting, diarrhea can occur.
And sometimes you get what we'd call maculopapular rash. Maculo just means little red spots and papular are a little red bumps. So kind of a spotty bumpy rash that's all over the body. The incubation period for West Nile. So, from the time that you are bitten by an infected mosquito, if you're going to get symptoms, it's usually within a couple of weeks. So this can be sort of a slow percolating process, although it can happen quickly. And some of that is going to depend on just the viral load that was in the mosquito in your own immune system. So typically the incubation is going to be, you know, big range two to 14 days, but it tends to be a little bit on the longer side, which means you don't really remember having any particular mosquito bites, probably because likely it was too long ago to remember.
And then one if the symptoms do start in those 20 percent of cases, they usually last for about a week or weeks average, so anywhere from three to 10 days. But about a week of those, the fever, headache, muscle aches, just feeling kind of sick. Of course, those symptoms are very similar to many other summertime viruses. So coxsackie viruses and other neural viruses, just the summertime viruses that go around fever is very common with those and may not have much of a runny nose and congestion like we do in the wintertime. We typically don't test for West Nile virus in, you know, just run-of-the-mill cases with a fever, headache running or fever, headache, sore throat for a few days.
We might check for strep if we're worried about that to rule it out, but we don't check specifically for West Nile virus in patients who aren't sick enough to be in the hospital because there's really no need to test for a specific virus. It can be very expensive and there's no real treatment for a specific treatment for it anyway, in mild to moderate cases. Now in these mild to moderate cases, which is most of them these 20 percent, the disease is usually what we would call self-limiting, which means your body's immune system takes care of it and you're feeling better in a few days.
A treatment is primarily supportive, so your body needs lots of rest so that its energy can be directed toward the immune system in fighting off the virus. When we have fevers, we sweat a lot if the immune system being revved up and treating an infection. Uses water as part of the process, and so when we're sick, we need to drink lots of fluids and maintain our hydration status. And then, you know, for the aches and pains, the headaches, the fevers using a fever reducer or medicine that'll help with muscle aches. So things like Ibuprofen, Motrin, Advil being brand names of that, or Acetaminophen, which means Tylenol. Those kinds of medicines may help us feel a little bit more comfortable. They won't fight the virus, but they may help with the overall symptoms while your immune system is fighting the virus off.
Now, those 20 percent that have symptoms, about one percent of those. So again, really small amount, but it can happen. A one percent of those can result in what we would call neuroinvasive disease, where the virus causes goes to the central nervous system and can cause encephalitis, which is inflammation and swelling of the brain or meningitis, which is the fluid or the cerebral spinal fluid that covers the brain and spinal cord. That can become inflamed and or the covering of the spinal cord. The meninges in the brain become inflamed, and that's what we would call meningitis. So encephalitis, meningitis are possible with West Nile virus. However again, it's very rare, just about one percent of symptomatic cases end up being neuroinvasive disease. Now, the bad news is when that happens, it's very bad.
Usually the symptoms are severe headache. You're not going to miss this. A severe headache, stiff neck, you know, very sick, vomiting, hallucinations. You can have seizures, coma, and even death. In fact, about 10 percent of those neuroinvasive disease cases will result in patient death because it's so severe. There's no way if you have the mild to moderate form of the disease, there's no way to know who is going to get neuroinvasive disease. There's no way to prevent that from happening. It's just going happen. And you just need lots of supportive care if it does. So hopefully you're in the 90 percent that survive and not the 10 percent who die from it.
So, I think the news media kind of latches onto those severe cases. But what we have to remember is that they're very rare and most people who have West Nile virus are exposed to it, even though it sounds exotic and dangerous. You know, 80 percent have no symptoms, 20 percent have mild to moderate disease get better, and it's just one percent of those 20 percent that ended up with, you know, becoming very sick. At particular risk are going to be the very young, the elderly and those with problems with their immune system. Now, in terms of prevention, pay attention to health department warnings. So, you know if a trap mosquitoes in your area have tested positive for West Nile virus, always just try to avoid mosquito exposure, in general. It's a good thing to do. Mosquito bites are itchy and there are other viruses that can be transmitted by mosquito as well.
Fortunately, we don't have to worry about malaria here in the United States, although mosquitoes in other parts of the world, we do have to worry about malaria. But there are things encephalitis, viruses like La Crosse virus for instance, can also be spread by mosquito. And as I said, they're uncomfortable and itchy and you can get secondary skin bacterial skin infection, mosquito bites from itching them and breaking the skin. So we want to avoid mosquitoes. They're most active at dusk, during the heat of the day. They tend to dehydrate if they're flying around and die. So during the actual day, usually mosquitoes aren't as much of a problem. But as the temperature and humidity levels drop around dusk, we do see more mosquito activity. Uh, you want to wear long sleeves and long pants when exposure cannot be avoided. And of course, consider using an insect repellent with DEET, up to 30 percent is as high as you'd want to go with that.
The higher percentages aren't necessarily stronger, they just last longer. So if you're going to be outside with mosquito exposure for several hours, then you want the higher concentration of DEET up to 30 percent. The lower ones, if you're just going to be out in an hour, you could probably get away with using a smaller percentage of DEET. You don't want to use DEET for babies less than two months of age, a spray it on the hands and wipe on the face. Don't spray it directly on the face. The insect repellents with DEET and avoid the eyes and avoid the mouth. Spray it on your clothes as well as your skin. And the reason for this is, especially if you're in an area that has Lyme Disease and you're trying to also prevent tick exposure. Ticks can get on your clothes.
And if the DEET's not there, they could find an opening, get into your onto your skin and a bite to that way. So having DEET on your clothes will also help repel ticks that might be in your area. And then after you're done outside, wash your clothes and wash your skin. You want the DEET off, you don't want to sleep on it overnight. It can be toxic to humans if you're exposed to too much of it, over a prolonged period of time and it gets in the bloodstream. But with everything in medicine and in life, we're looking at risks versus benefits and with these guidelines, the benefits of using DEET, especially if there are pathogens in mosquitoes and ticks in your area that we're worried about then the benefit of using DEET outweighs the risk. But again to minimize that risk, you would want to wash the clothes and wash your skin when you come inside.
Also, avoid products with sunscreen and DEET combined. And the reason is sunscreen needs frequent application. DEET does not. You just want to use the DEET one time, not keep reapplying it. So it's better just to use separate products. If you need an insect repellent with DEET and sunscreen. I'm going to put some links in the show notes for you. If you're interested in learning more about West Nile virus, if you head over to pediacast.org, look for the show notes for this episode for 413. You'll find a couple of links. One is a to the CDC website.
They have a great information page on West Nile virus that talks about prevention, transmission, symptoms, all the things that we talked about but even more detail. Statistics, and activity maps, you know, where do we see the infected mosquitoes mostly in the United States, where do we see the most cases of asymptomatic human infection, and there's also information on mosquito control and a more information for healthcare providers. If you do find yourself treating someone who you think might have West Nile virus, so be sure to check that out. There's another one from the World Health Organization. They have some additional information for our international listeners and I'll put a link to that in the show notes as well.
Dr. Leena Nahata is a pediatric endocrinologist at Nationwide Children's and an associate professor of pediatrics at the Ohio State University College of Medicine. She works with patients and families and our fertility and reproductive health program, which evaluates children, adolescents, and young adults and guides them and their families through available options for fertility preservation. We also have Stacey Whiteside with us. She's a nurse practitioner at Nationwide Children's and serves as our oncofertility navigator. That's what we're here to talk about today. Fertility preservation, and navigating through the choices. So let's give a warm PediaCast welcome to Dr. Leena Nahata and Stacey Whiteside. Thanks so much to both of you for stopping by today.
Dr. Leena Nahata: Sure.
Stacey Whiteside: Thanks for having us.
Dr. Mike Patrick: Dr. Nahata, let's start with you. Just clue us in what exactly do we mean by fertility preservation? What's this all about?
Dr. Leena Nahata: So, fertility preservation is essentially the process of saving or protecting eggs, sperm or reproductive tissue so that a person can use those to have a biological child or a child with their own genetic material in the future.
Dr. Mike Patrick: Yeah. And it's a good thing that we have medical professionals focusing on this particular thing because it's easy when something has come up that does, could cause a problem with later fertility. You know, the primary focus tends to be on the disease, on the treatment, on the thing, you know, that is harming fertility. But we really do want a separate set of eyes on preserving fertility for the future, right?
Dr. Leena Nahata: Yeah, definitely. And I think you know, it's especially important for a team to be thinking about this because, you know, we're ultimately pediatric providers. Pediatric providers are not used to thinking about their patients having children. In fact, when we're talking about reproductive health and pediatrics more often, we're talking about prevention of unplanned pregnancy and sexually transmitted infections. So this is, sort of a different or a less conventional aspect of reproductive health. But, really a lot of information has come out showing how important it is.
Dr. Mike Patrick: Yeah, absolutely. And this is one of those areas that's really kind of expanding and new, correct? So, five years ago were there fertility preservation programs?
Dr. Leena Nahata: Yeah, I would say that much of this really started from a work in Chicago where the oncofertility consortium was founded by Dr. Teresa Woodruff in 2006. So this has really been done you know, really expanded a lot over the past decade or so. And that's when you start seeing a lot of different organizations coming out with guidelines about the importance of fertility counseling and preservation over that time period.
Dr. Mike Patrick: And as a medical science advances, we're seeing more kids who are surviving into what we would consider the reproductive years that may not have survived into that time frame before. So it really does affect more patients to, than it has in the past. Who are candidates for this procedure? So what exactly a sort of disease processes, treatment processes are we talking about in terms of thinking about fertility preservation?
Dr. Leena Nahata: So, probably the biggest population that is established to need fertility preserving treatments is youth and young adults with cancer. So we know that many different chemotherapeutic agents and radiation can impact future fertility. But the more we've learned about that population, we've also realized that many other populations are also at risk. So for example, individuals with lupus or other rheumatic conditions may get some of the same alkylating agents that impair fertility as people with cancer do. There are also many populations that get stem cell transplantations. And the agents used for stem cell transplantations are also going out of toxic.
And then as we've learned more about that, we also realize that there are other types of medications that can impact fertility, so one population that is often discussed these days as those with gender concerns, getting hormonal therapies and what the impact of those therapies may be on future fertility. And then we also have a population of patients that are at risk, not because of treatments, but because of their underlying conditions. So differences are disorders of sex development or chromosomal disorders such as Turner's syndrome, Kleinfelter Syndrome, galactosemia, all of those conditions impact future fertility.
Dr. Mike Patrick: Let's get real practical in terms of what our options are. I mean, how do we actually preserve fertility? And Stacey, you're our hospital's oncofertility navigator. So, what exactly does that term mean? Oncofertility navigator. Who, what is that?
Stacey Whiteside: So, oncofertility was the term that Teresa Woodruff coined when she developed their program at Northwestern, which is kind of a combination of the oncology field and the fertility field. And since that time, as Dr Nahata said, it's expanded to many other populations that have potentially fertility impairments from their treatments. So, I help families figure out what their options are, what their risks are, and help set up the treatments and procedures that they can undergo to preserve their fertility.
Dr. Mike Patrick: Yeah. So really walking alongside them, explaining, educating, helping them to make an informed decision on which way to proceed. So what are the options for preserving fertility? And let's talk about girls first, if that's all right.
Stacey Whiteside: Sure. So, for girls it depends. With all of these options, it depends if you've gone through puberty or not, because if you're not as mature then some of these options aren't available. So for girls prior to puberty, the only fertility option we have for them is what's called, ovarian tissue cryopreservation, and that's a surgical procedure where we go in and remove some ovarian tissue or an entire ovary and they can freeze that for future use.
Dr. Mike Patrick: Yeah and as I was researching this, and I'm by no means the expert on this and just like anyone else, I can come across bad information. So tell me if I'm wrong, but I had heard that that is considered experimental?
Stacey Whiteside: It is considered experimental, the actual procedure, the removing of an ovary has been done for years. What's the experimental part is the utilization of the tissue afterwards. As of reports from last year, there's over a hundred pregnancies now in live births that have come from this tissue and in some European countries, this is actually not experimental anymore. So, we're hoping that category gets lifted in the future here in the States as well.
Dr. Mike Patrick: Are there some research protocols where that could be used?
Dr. Leena Nahata: Yeah. So one thing that it makes it difficult to understand or navigate for the average person is that, you know, we always have to take that data with a grain of salt. So those live births, the majority of those live births had been reported from people who have frozen tissue after the actual onset of puberty. So even though they were eligible for other established procedures like say, cryopreservation or egg freezing, they opted for ovarian tissue cryopreservation for a variety of reasons. You know, there is no time delay with ovarian tissue cryopreservation, whereas egg freezing can take several days to accomplish. So about 10 to 14 days versus within 24 to 48 hours. But I think it's really important when we talk to families, you know, one thing that Stacey does so well when she's talking to families is to explain the nuances of how to interpret those data. So if you're talking to the family of a three-year old, we can't necessarily say all that live birth data is, you know, are applicable to somebody of that agent. That's really one of the driving factors and still considering OTC experimental.
Dr. Mike Patrick: And the fact it's still experimental though, there are some protocols where you would do this so that in the future we can say, “Oh for three-year olds it was this percentage effective.” We're not going to know that in 20 years down the road when the three-year olds are you know, 23.
Stacey Whiteside: Exactly.
Dr. Mike Patrick: And then another tough part of that is since we don't know for sure, then kind of walking parents through the risks and benefits of the procedure itself. You know, does the benefit of doing this outweigh the risk? And I'm sure that's sometimes a difficult conversation too.
Stacey Whiteside: It is difficult because most of the time when we're having these conversations with families, they're under extreme stress. They have kind of a new diagnosis that they've been hit with, and they're thinking about a lot of things all at the same time. And so, it may not be something they've ever thought about before for their young child. And we do have to caution families that we don't know just because we saved the tissue, it's not a guarantee that there's a child on the other end at some point. And so, we kind of have to do a risk benefit kind of analysis with them and talk to them about all the pluses and minuses and help them negotiate that process.
Dr. Mike Patrick: But this is a procedure that we can do here at Nationwide Children's?
Stacey Whiteside: Absolutely, yes.
Dr. Mike Patrick: And then so those are going to be for the girls who have not hit puberty yet. So kind of walk us through the options then for the teenagers who have started their periods, what can we, what are the options in terms of preserving their fertility?
Stacey Whiteside: So the most established option for girls who have already been through puberty is freezing eggs, and we do that in conjunction with community partners at adult reproductive endocrinology practices. They go through medications to help kind of stimulate their ovaries to produce a lot of eggs. They're monitored very carefully, and then they have those eggs harvested at the adult reproductive practices.
Dr. Mike Patrick: And this will be then you'd do in vitro fertilization in the future with those eggs?
Stacey Whiteside: Correct.
Dr. Mike Patrick: And then also with the ovarian tissue that we had talked about previously, the same sort of thing?
Stacey Whiteside: Correct. There are medications that we can use to suppress girls' menstrual cycles. They have very mixed reviews in the medical literature, whether they're helpful for protecting fertility or not. So again, we counsel patients that this may or may not benefit them as far as their individual reproductive function in the future. But that is an available option that's out there. And then those girls are also available for ovarian tissue. If for some reason a delay of 10 to 14 days, that's possible with doing egg freezing isn't a possibility for them if there's more urgency to start their treatment then they also can have ovarian tissue cryopreservation done.
Dr. Mike Patrick: Okay. So the medications would just help protect the ovaries and the future eggs from whatever it is that you're going to give that could potentially be dangerous. And then there's some surgical options too. Especially if we're talking radiation therapy?
Stacey Whiteside: There are. We can move the ovaries out of the radiation field if that's where the girls may be receiving radiation to their pelvis or kind of that general area.
Dr. Mike Patrick: And then the one other I'd come across just to be complete, the embryo preservation, but you'd have to have the partner now and actually have a fertilized egg from sperm, but that's something else that could be saved for later?
Stacey Whiteside: It could and it's the same process as the egg freezing. You just need to have a sperm donor or a significant other for our adolescents and young adults who may have a significant other at that time.
Dr. Mike Patrick: But the primary things that were the ones that are most commonly used are going to be the egg freezing and or ovarian tissue freezing for the girls who haven't reached puberty yet. And anything else with option wise for girls?
Dr. Leena Nahata: No. And just to clarify we do have an IRB approved protocol here. So that's, you know, you had mentioned are there experimental protocols and so yes, we have an IRB approved protocol here at Nationwide Children.
Dr. Mike Patrick: So this is one place where folks could come to, to get that done. But of course we don't want to delay necessary treatment either. So there's that. And in terms of if you're far away and
Dr. Leena Nahata: Yeah, that's always the tricky thing is I think that you know, more and more centers fortunately are opening these protocols, but it is tricky if you don't have a protocol already open. The guidelines do say, you know, offer to patients to go elsewhere. If you don't have a protocol available, but we know logistically there can be a lot of challenges with doing that.
Dr. Mike Patrick: That's then you would also be in contact with the child's primary oncologist to how safe is it to wait, does this something that needs the treatment needs to get started immediately? Or you know, I imagine it doesn't take a lot of time to set this up and I mean we do have air travel now.
Dr. Leena Nahata: Right.
Stacey Whiteside: We're able to turn around these procedures pretty quickly when we know there's a new patient. But all of these decisions are weighed with the oncologist or the treating physician to determine, you know what time frame do we have, what's the safest thing for the patient? And that's part of the conversation with the families and the physician.
Dr. Mike Patrick: Okay.
Dr. Leena Nahata: Yeah, and I think you've brought up an important point that programs like this cannot be successful unless all the stakeholders are involved. So, you really need a lot of collaboration and close communication from just that first time point where there's even a suspicion that there may be a condition that, you know where the treatment would impact fertility because once that diagnosis is established, there is an urgency to start that treatment and not just from the provider's standpoint but from the family's standpoint. So even when the family is told it's okay to wait, you know, a couple of days in order to do this fertility preserving procedure, you can imagine how much anxiety there is with that. So I think, you know, our program here has been, successful primarily because of really good communication you know, within our team and also with all the primary providers that consult us first.
Dr. Mike Patrick: Absolutely. Because from the family's point of view, you want to get treatment started now. I mean because that could be life saving. And so, I certainly can understand stand that from the parents' standpoint. So for boys then, what kind of options do we have to preserve fertility for them?
Stacey Whiteside: So for boys who have reached puberty, we can do traditional sperm banking. That can be done here at the hospital. We can send patients to the reproductive lab that we use, and we can also surgically retrieve sperm for boys who may not be able to produce a sample due to their illness. For pre-pubertal boys then, the only option we have is testicular tissue cryopreservation.
This is not as far along as ovarian tissue cryopreservation, it is much more of an experimental procedure. So boys would go to the operating room and that testicular biopsy is done and then that tissue is stored for future use. At this time, there haven't been any human births from this procedure. And so it's a lot more experimental than any other procedures that we have.
Dr. Mike Patrick: So when you say a cryopreservation, we're talking freezing sort of like, deep freezing?
Stacey Whiteside: Yes.
Dr. Mike Patrick: So where do these things get stored?
Stacey Whiteside: So initially, we have a cryobiology lab that's in Columbus, and they store a lot of our sperm samples and there are national cryobiology labs that are affiliated with our tissue. Cryopreservation protocols for the ovarian and testicular tissue that had been storing you know, reproductive materials for years and years.
Dr. Mike Patrick: Yeah. And that's the testicular freezing. That's something that we also do here at Nationwide Children's?
Stacey Whiteside: We're in the process of getting that approved through our IRP, so we're hoping, you know, sometime in the very near future that we will be doing that as well.
Dr. Mike Patrick: So this is a little bit newer in terms of the boys particularly again, we're talking before puberty if they're able to produce a sperm sample or it's a little easier to get sperm if they through, if they've already gone through puberty, to get that with a needle, correct?
Stacey Whiteside: Correct.
Dr. Mike Patrick: Okay. And then all of these things is, most of this will be just outpatient, except unless you're moving ovaries and that's something that would take place in the operating room, correct? But the rest of this is all outpatient.
Stacey Whiteside: It can be done outpatient. A lot of times patients are inpatient, getting ready to start whatever treatment kind of prompted their diagnosis. And so, they're often done in conjunction with their initial diagnostic process, but we can do all these procedures outpatient as well.
Dr. Mike Patrick: Okay.
Dr. Leena Nahata: Yeah, and we try our best that if somebody is getting another procedure under anesthesia in the operating room to do this, you know, any of these fertility preservation procedures that have to be done in the operating room at the same time. So that it's a single anesthesia and one hour episode if, possible. Now of course, if somebody is producing a sample themselves through self stimulation, then they don't need to go to the OR again and get any anesthesia at all.
Dr. Mike Patrick: Right. So especially if you're looking at trying to get tissue, if they for instance, have a solid tumor and there's going to be debulking of the tumor, but that's going to be followed with radiation or chemotherapy, then that's something that could be done at the time of the tumor surgery.
Dr. Leena Nahata: Yeah. It's often even as simple as a line placement. So like a central line placement to start therapy or a biopsy, you know, bone marrow biopsy, something like that. We can do it in conjunction with that because we are really trying to do it early on before any therapy begins.
Dr. Mike Patrick: That makes sense. And then in terms of costs, is this something that insurance will pay for or is this entirely on the family?
Stacey Whiteside: Generally, this entirely on the family. There are five states now that have mandated fertility preservation coverage, but Ohio unfortunately is not one of them. So, there's no mandated insurance. So some carriers will cover it, but it's the exception and not the rule.
Dr. Mike Patrick: And that can make it even more difficult for families to decide because if it's experimental, and we don't really have a lot of data because we've not been doing it long enough, if this is going to work or not, you know, with anything we spend money on, it's like is this gonna work? Is it worth the money? So that just makes us even more difficult. But the fewer people that we have doing it, the less data will have down the road.
Stacey Whiteside: Absolutely. And there's, you know, there's not only the cost on the front end, there's cryopreservation storage fees for you know if you're a young child, and they're two years old, and they're gonna wait and you know, another 20 years before they used this material. Then that's 20 years of storage fees and then utilization on the back end can also have costs. So, it really can add up quickly and be pretty overwhelming for families.
Dr. Mike Patrick: If you're a part of a research protocol, then is there funding to help pay for this for families? Or is this still on the family?
Stacey Whiteside: Some places do have funding for that and that's something that we're working with our foundation and hope to be able to address at some point. But for the most part, most of the costs is on the families.
Dr. Mike Patrick: I think do any other particular pieces, parts of fertility preservation that we didn't cover?
Dr. Leena Nahata: I mean, I think we've talked about some of the technical aspects of it, but sometimes the most important thing to talk about upfront is why are we doing this? Right? So why is fertility preservation so important, especially given all that we've said about the challenges and the costs, and the experimental nature of some of these things. I think the important thing to think about is that all the literature, I say the majority of literature that's out there as these children grow to be adolescents and young adults is that, you know, they're coming back and saying that now that I'm through my disease or you know, through my treatment, I really want a lot of the things that other people my age want. So you know, when they're in their twenties or thirties, a lot of these people are coming back and saying I want to have a biological child.
And maybe it's not something I was thinking about at the time that I was faced with the option of having fertility preservation or maybe my parents weren't in the position to do this for whatever reason. But we see a lot of regret and distress about this as these children grow to be adults. And it's not to say that there aren't different ways to have families. We counsel a lot of people about that because not everyone's going to be a candidate for fertility preservation for whatever reason, and so I think it's equally important to think about different ways to be a parent and expand your family, but for a lot of these kids, eventually they're gonna want to have a biological child if that's an option for them. And so I think it's really imperative for people upfront to be giving them that option as much as possible or at least providing counseling about their risk and their options upfront.
Dr. Mike Patrick: If there are folks at other children's hospitals around the country who may not have a fertility preservation program, is this the sort of thing that you guys are willing to talk to folks and say, “Hey, here's how. This is our experience. This is how we've set it up.” To help others who may be looking to provide this service in the future at their own institutions.
Stacey Whiteside: Absolutely. You can find our program is on the nationwidechildrens.org website. If you search the keywords, fertility and reproductive health, you can also email us at firstname.lastname@example.org. Phone number is 6147228870. And I have a Twitter account @fertilitynp that you can also follow that has a lot of fertility and just general reproductive health information.
Dr. Mike Patrick: Excellent. Great. And I'll put a link to fertility and reproductive health program here at Nationwide Children's in the show notes for this episode, which is 413 and it'll be available at pediacast.org. Just look for the show notes, episode 413, and you'll be able to find that link. And then, the fertility and reproductive health program. It's a multidisciplinary clinic, right? To tell us who all is involved in this.
Dr. Leena Nahata: Yeah. So it's actually not even a clinic, but it's a program and this program was established in 2015 and has grown quite a bit over the past few years. We have key stakeholders from myself, endocrinology, a couple oncologists, plus Stacey, gynecology, urology and psychology. So really trying to cover all the people who are going to be doing these procedures and providing this counseling and being at the front lines, evaluating these conditions and therapies that are potentially impacting fertility long-term.
And more recently we've even had, you know, partnerships with people in hematology, in rheumatology and all these other providers that have noticed that their patients may be at risk too. And I think some of the important things that we've done in the past few years that should be noted are creating initiatives where we really take the guesswork out from the primary provider. So rather than we're depending on the primary provider to think about consulting us, for instance, for somebody with a new cancer diagnosis we're part of the new cancer diagnosis order set.
So it's an automatic referral to fertility and reproductive health is placed in that new consult bundle. And that's because we think it's important. Even if somebody isn't a candidate or doesn't want fertility preservation, they should still have the option of knowing what their risk is so that they know down the road they have that information. So, they may not need to pursue fertility preservation upfront or choose not to, but at least they have that information. And so making that an automatic, sort of an opt out mechanism and epic rather than having somebody have to think about it has really made a big difference. Some of the other things that we're doing is not just providing counseling upfront, but providing counseling on an ongoing basis. So now Stacey is reaching out now that she's full time dedicated to our program as of July.
She's reaching out to people more systematically and survivorship. So, people who have may or may not have chosen to preserve fertility but you know, are now need to be informed about their fertility risks and just other aspects of reproductive health. So it's not just fertility but contraception and other sexual function, other important aspects of reproductive health that we can now track and monitor and counsel about because they're actually, even from a fertility standpoint, maybe options for fertility preservation after treatment for some of our populations. And so, it's really important to have these conversations on an ongoing basis.
There's been a lot of literature where people have said that, you know, I don't remember anything about hearing about fertility at that initial time point, even if they did and even if it's documented because many times they were much younger. They were sick, it was a long time ago. So I think that you know, not having these conversations on a regular basis can lead to a lot of uncertainty in distress and sometimes even unplanned pregnancies because maybe someone assumes that they thought they heard they were infertile, and then they're not. So I think that having a formalized structured program and all of these initiatives has allowed us to reach out to other populations and better serve our youth with cancer who are at risk for infertility.
Dr. Mike Patrick: Makes a lot of sense. And I think another potential advocate is the primary care physician, and we're kind of spoiled here in Central Ohio because Nationwide Children's is such a large institution. It's the only a dedicated pediatric provider in town. And so in our area, anyone with a new diagnosis of a cancer in the pediatric population is going to come here. And because of those things in epic, and then we also had, there's a lot of awareness about the program folks get sort of funneled in. But we have a lot of listeners all across the country. We have, folks you know who may not have a fertility preservation program at their pediatric facility. And so any primary care docs who are listening to this program now, something to keep in mind if you want of your patients is diagnosed with a cancer, is maybe it needs you know, you might be the only voice that's saying, “Hey, what about fertility that could help this family and make a real difference for them in the long run?”
Dr. Leena Nahata: Yeah, absolutely. And just in line with what you're saying, I was involved with the American Academy of Pediatrics in publishing a clinical report on fertility and sexual function counseling and at risk populations. And in that clinical report, which was just published in August. You know, there's a big table that lists all the potential medical conditions that may be at risk and really giving some talking points to both primary care providers in pediatric specialists about how you broach this difficult topic about fertility, sexual function and other aspects of reproductive health for that very reason that you just mentioned.
Dr. Mike Patrick: Yeah. And so now we need to put the clinical report, a link to that in the show notes as well so folks can find it easily for this episode 413. So I'll hunt that down, and we'll get a link to that. Again, we'll also have a link to the fertility and reproductive health program here at Nationwide Children's. Cancer.net also has a nice site called preserving fertility in children with cancer. Lots of good educational content there. And the National Institutes of Health, NIH, also has a page on what is fertility preservation, that kind of expands into the adult realm as well. And we'll put a link to that because it's all the same young adult teenagers as we're talking about these things. So we'll put a link to all those places in the show notes for this episode for 413 over at pediacast.org. Well, Dr. Leena Nahata, pediatric endocrinologist and Stacey Whitesite, nurse practitioner in our oncofertility navigator. Thanks to both of you so much for stopping by today.
Dr. Leena Nahata: Thanks for having us.
Stacey Whiteside: Thank you.
Dr. Mike Patrick: All right. We are back with just enough time to say thanks once again to all of you for taking time out of your day and making PediaCast a part of it. I really do appreciate that. Also, thanks to our guest this week, Dr. Leena Nahata, pediatric endocrinologists with the fertility and reproductive health program here at Nationwide Children's hospital and to Stacey Whiteside, nurse practitioner and oncofertility navigator here at our hospital. Really do appreciate both of them stopping by and sharing their expertise with all of us.
It's when there's too much amniotic fluid surrounding a baby during pregnancy. Why parents worry about vaccines, what pregnancy does do your feet? Gotta love that one. Preterm labor, infertility and adoption. She has lots of great guests with the explanations parents can easily understand regardless of your background. So be sure to check that out. Again, Common Sense Pregnancy and Parenting, and I'll put a link in the show notes. Reviews of podcasts are always helpful regardless of which podcast you're listening to, including this one. But we all use reviews as we search for things to do because we want to get the most bang for our buck, right? And even though podcasts don't cost anything, they do cost you in time spent listening to the podcast. You want to listen to good ones. So, I would encourage you, if you find PediaCast helpful, please leave us a review.
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