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Just Keep Pushing Those Buttons

Just keep pushing those buttons. Well, that's what we do in the fertility business. We tell people, "Just keep pushing the button." It's hard, but you have to kind of leave your modesty at the door when you're talking about infertility, because we get right down to the nitty-gritty.

For many people, maybe most, having children and raising children is the biggest part of their life plan. Now, not everybody. And it isn't maybe a baby now, but having a baby eventually or raising a family is where people came from because we were raised and we were kids and it's what we know. But for some people, it just doesn't happen.

When it doesn't happen, it really touches all of the seven domains. So, infertility is the paradigm for the seven domains concept because the process of trying to have a baby, of not succeeding in a time that works for you, and then the consequences of physical, emotional, social, financial, intellectual, environmental, and spiritual all get wrapped up. We're going to talk about that.

What Do You Need to Get Pregnant?

The physical part may be that the basic mechanisms of getting pregnant aren't working. What do you need to get pregnant? You need eggs, and the eggs need to be kind of young eggs. They can't be old eggs. So, women over 35, and especially over 40, and really after 45, don't have eggs that are very likely to make a baby, even though they ovulate every month.

• You have to have young eggs and you have to have fallopian tubes, because it's the fallopian tubes that get the eggs and the sperm together.
• You need sperm. It turns out that our understanding of sperm has really evolved in the last 30 years. So, we thought we just needed some sperm. In fact, in the olden days, we thought if a man could ejaculate, he was fertile. But now we know it's a lot more complicated than that.

We need not only large numbers of sperm, because a lot of sperm get lost because they don't ask for directions, but that's actually kind of a myth because they do follow a direction to get to the egg. That's another story. But we need enough sperm and they have to be sperm that can actually bind to the egg and they have to be sperm that can get into the egg. And then they have to be sperm that can actually add good DNA, because at least half of the sperm in a healthy man are not normal. So, you need to have a good sperm.

Environmental Factors Contribute to Decline In Fertility In Men

There's some evidence that there is an overall decline in fertility in men, that the number of sperm per ejaculate is half what it was in 1950. And we think that is probably due to environmental factors. We certainly know that the rise in obesity in men makes a difference in terms of sperm quality.

But here in the Valley, Salt Lake Valley, we know that air quality . . . it's not just here, L.A., New York, Winston-Salem, Chicago. When you start looking at areas where there's a lot of air pollution, you find a decline in sperm quality.

So, we want people to have children that they want and no more than they want and plan for, but when people want them, we want them to have them easily. And there are environmental challenges to fertility.

And so, we're concerned, I'm personally concerned about both air quality and food safety, and things like plastics in our cosmetics and in our lotions, and pesticides in our food that may make men and women less fertile. And there's a rising bit of information about this.

I think we're concerned about both pregnancy and fertility with respect to chemicals in our environment and the air that we breathe. I think that there's good information at the , ewg.org. If you're worried about putting certain kinds of lotion or using certain kinds of products or cleaning with certain kinds of products, ewg.org can help you navigate the kinds of things that might be harmful to your fertility.

Infertility Is the Inability to Conceive Within a Year of Regular Intercourse

Infertility is defined as the inability to conceive within a year of regular . . . now, irregular is in the eye of the beholder, but at least twice a week intercourse. So, you have to have intercourse.

Now, clearly, there are people who don't have sex, women who don't choose to have a partner that they have sex with, or they are men who don't have a woman to have sex with, because they don't choose to have a woman partner. But in general, we're talking about heterosexual couples who are trying to have a baby and can actually have sex. So, it's a year.

An infertility evaluation begins and focuses on the eggs and the sperms and the tubes part. Well, what happens if life gets in the way? People might put off having their babies because they were going to school and then they were working on their careers, or they didn't find the right person to have a family with. And all of a sudden, there they are at the end of their fertile life and they aren't getting pregnant.

And we have some options in that regard, either in terms of saving eggs if you're worried that you might not have the ability to get pregnant right now or in the reasonable future, or using somebody else's eggs and donor eggs.

There are other reasons why people can't have a healthy child when they might actually be fertile. So, they might be able to conceive, but they have conditions that will get in the way of their growing and bearing a child.

• That could be that the woman has a medical condition that would get much worse in pregnancy — The poster child is pulmonary hypertension, a disease where there's high blood pressure in the lungs. People with pulmonary hypertension, and women who give birth have a very high, and in our business, meaning as high as 15%, chance of dying in the first 48 hours after giving birth. So, we strongly encourage people with critical heart disease not to get pregnant. And that's heart-rending.

  Some people get pregnant by accident and we do our best to get them through the pregnancy without dying. And some people say, "I don't care if I have a risk of dying. I just want to have a baby." And some people say, "Okay. I guess I won't have a baby until I get a heart transplant," or some heart/lung transplant. So, that's hard.

• There are other conditions where the disease actually is toxic to the baby — Uncontrolled diabetes is the poster child for that because people who have diabetes that's uncontrolled can have birth defects in their babies. They can miscarry and their babies can die in utero because their sugar is very out of control. In other conditions, they might be taking medications that are toxic to babies that might actually cause birth defects.

These are conditions where we consider them infertile because they can't bear a child, but all their mechanisms are working. And those situations are truly heartbreaking.

Gestational Surrogacy as an Option Through Infertility

However, the great thing that's happened in the last 40 years is that we actually have a way around that with gestational surrogacy. Now, it's expensive, but the healthcare for people who have life-threatening diseases is very expensive too, and the healthcare during a pregnancy with a very sick mom or a very sick baby is very expensive.

Gestational surrogacy is where a couple, an egg and a sperm from an intended parent, that's what we call them, "the intended parent," is put together in a test tube, and the embryo is put in a surrogate who is healthy and young and is able to carry a baby. And, although the laws vary from state to state, this is something that is available in many states, gestational surrogacy. In the state of Utah where I live, we even have a situation where the intended parents and the biological parents, the donors of the egg and sperm, names are put on the birth certificate.

Gestational surrogacy is a way through the infertility process when someone is too sick or has conditions that would be hard for the baby or for the mom.

The Intellectual Side of Infertility

Navigating the whole workup and treatment of an infertility evaluation takes a lot of smarts. It can be very confusing. First of all, many couples don't even know how to get pregnant and they aren't doing the appropriate sex acts to get pregnant. I won't go into that any more than that, but I have had patients who just weren't quite doing the right thing, or they weren't doing it at the right time.

But to go through an IVF program, our consent form is for college-educated people and our patient ed forum is for college-educated people. It's very complex. We're asking our patients to be numerate, to be able to understand statistics. Because when we say there's a 20% chance of getting pregnant using this technology, or there's a 30% chance, or there is a 0% chance, and when couples say, "We still want to try," I don't say, but I want to say, "What part of zero don't you understand?"

Because, in fact, even people who understand numbers, when it comes to infertility, are desperate to try even the chances when the chances are zero or so close to zero that their thought processes don't really incorporate the number zero.

Intellectually, it's demanding because even people who are very smart, their emotional processes are overcoming their intellectual decision-making, because in fact, having a kid is not usually an intellectual decision. It's an emotional one and it overruns their numbers.

Emotional Consequences of Infertility

Being infertile has enormous emotional consequences. There's, for women, a fair amount of shame and blame that comes with not being able to conceive a child. Shame because this is something that's natural. You should be able if you're a woman just to do this.

Blame, women often say, "If I just hadn't had sex when I was 16, I'd be fertile now," or, "If I hadn't done this, or if I hadn't gotten that sexually transmitted infection, or if I hadn't gained that 30 pounds, and now I'm not ovulating very regularly," or you name it, women blame themselves for everything.

So, blame and shame are part of dealing with infertility for most women, even really smart women who know it's not their fault and know that God isn't punishing them.

In the darkness of the night of the hope of a pregnancy, people blame themselves. And within a relationship, they may blame each other, and that's also not uncommon. The man may be pointing his finger at the wife because she isn't ovulating or she has endometriosis. And the woman may be putting the finger on the guy because his sperm isn't so great. But in fact, infertility is a couple's problem. It's not one person's problem. It's the couple, because a couple together isn't getting pregnant.

But, often for couples who are really struggling with how far to go in their fertility workup, how much to pursue in terms of in vitro fertilization, what are the financial burdens of this process, which can be enormous in some situations, in most situations, when do you say enough is enough? This sometimes is something that couples struggle with.

We, in our own fertility center, have a behavioral psychologist who works with us for all of our couples who are dealing with tough stuff like surrogacy, egg donation, when it's time to quit, and couples who are really struggling with the process.

I think understanding that there is help if you're struggling with your partner, and it's normal to have difficulties, like, "I'm tired of making love to a calendar. I'm tired of making love three times a week. I only want to make love once a week," or, "I just want to go out and have that beer and I don't want you looking at me because I'm having that beer." You name it and it can be a struggle for people personally, for a couple emotionally. Most infertility teams have a social worker or a behavioral psychologist who can help couples who are struggling emotionally.

Social Expectations of Fertility

So, there are social expectations for family by culture and by family. I think of the traditional maybe Asian or Jewish grandmother who wants to have a baby, and wants to have a grandbaby, but I think things are changing now.

 

Dr. Jones: My producer, Chloé, can you help me a little bit, Chloé? You are of a generation where kids may not be number one on people's personal life goals.

°ä³ó±ô´Çé: Yeah. So, a little background. I am Vietnamese. It's an Asian culture. Most are the same in terms of family beliefs and traditional beliefs. Vietnamese culture particularly is one that really values family, and that includes having a family.

Thankfully, my mom and dad have been here since I was 2, and so their mindset is a little bit more Americanized. But I think, for the most part, a lot of people my age back in Vietnam and back in other Asian countries, it's almost kind of like, "Why aren't you married yet?" I always had this . . .

Dr. Jones: Not that they want you to pair bond, but they want you to make the steps so that you can make the baby.

°ä³ó±ô´Çé: No. They want the baby. Exactly. If I can't take care of myself yet . . . I mean, obviously I'm an adult, so I can take care of myself, but I don't think I'm in the right mindset to take care of another human being, especially one that cries all the time.

For me, it's very easy right now to say, "No, I don't want a baby," but it's harder to explain the reason why to other people, and especially other Vietnamese people, especially friends of my parents. It's common in American culture to say, "Hey, how are you? How's the job? How's life?" and catch up. Their first question is, "Are you married yet?" And I'm like, "No, I wasn't married a month ago."

Dr. Jones: Well, if you were married they'd say, "When are you having kids?"

°ä³ó±ô´Çé: Exactly. That's what that question leads to. It's, "When are you having the baby?" It's a question that I get asked a lot.

Dr. Jones: But you're not alone. People of your generation are actually choosing not to marry, or not to marry and not have kids.

I read an article about Japanese women, and in Japanese culture, women often work now but they're still expected to stay home full time with their children. And now women are saying, "Why would I want to get married?" They then wrote themselves into a life of what they might see as servitude and they can't really move ahead with their career plans. So, fewer and fewer Japanese women are getting married by choice.

But I think it's heartbreaking for people who finally made that decision to move ahead, and these are people who've often been quite successful with many parts of their lives, to not have this part. They can't take their intellect and their focus and their energy and make this happen the way they've made everything else happen in their lives.

°ä³ó±ô´Çé: When you bring that up, I think about a story that my mom told me. It didn't happen to her and it hasn't really happened to anybody in my extended family, but in Asian cultures, it's very important that you give birth to a boy. Very important because the boy "holds the family name and carries the family name."

She tells me stories about how her neighbors back when she was in Vietnam or people that she's known, they tried to have children. They're successful and it's a happy occasion, and then when they find out it's a girl, the joy is sucked out. It's like, "Okay, now I have to give birth to this baby that I know isn't going to be as loved had it been a boy."

So, then they try again and it's still a girl. Then you have a third one, a third child, and the third child is also a girl. And then pretty much the family, the man's side of the family, just ignores not only the daughters, but ignores the daughter-in-law. And the blame is put on the daughter-in-law that she "can't give birth to a boy."

Dr. Jones: When we know that it's the sperm . . .

°ä³ó±ô´Çé: When we know that's not true.

Dr. Jones: We actually have requests in our infertility practice for couples who are quite fertile for family balancing. And it's often because they have girls and now they want a boy. Occasionally it's because they have boys and now they want a girl.

The Ethics of Oncofertility

The concept of what they call family balancing is the effort for fertility services to either choose an embryo that they know in advance is a girl, or maybe do sperm sorting so that more boy sperm or girl sperm are inseminated.

People may come to us for infertility services, not because they're infertile, but because they don't have the child yet that they were hoping for to balance their family.

Now, what about young people who are faced with a lethal cancer that can be cured, but the cure itself may limit their fertility or end their fertility with chemotherapy and radiation?

In my career, my very first patient for whom we did fertility preservation efforts who had cancer was a wonderful young woman, a woman I knew from outside my own practice. She was brilliant and she was funny and she was gorgeous, and we saved her eggs, and then she didn't make it.

So, for me, in the back of my mind was, "I hope that somebody takes these eggs. I hope her parents take these eggs and make a baby. I want this woman that I loved to live on."

This is not a trivial question in the world of oncofertility. For young people who are thinking about getting pregnant in their future, they kind of put that thought aside while they're dealing with their chemotherapy and their cancer, but it comes up and we need to talk about it at the beginning. And today, we're going to talk about it right now.

We are fortunate to have two specialists. Dr. Joe Letourneau, who is with the Utah Center for Reproductive Medicine at the University of Utah. He's a specialist in advanced reproductive technology and fertility preservation. Also with us is Dr. Douglas Fair, who's the cancer specialist and director of the Oncofertility Program at the University of Utah.

 

Dr. Jones: My question is, we have eggs or sperm in the bank and the person for whom we were hoping this future would unfold, and they could use them themselves, but they didn't make it. So, what do we do? Why don't we start with Joe?

Dr. Letourneau: It's a difficult question. It's one that we do encounter. The reason we are doing these procedures is to focus on the future and help people build that future. But in those circumstances where patients may pass away or life circumstances for them may change . . .

For example, when we met them prior to their diagnosis, they were partnered with a certain person and they may no longer be partnered with that person, but perhaps they've created embryos together. So, there are questions of who sort of owns those embryos and how do we handle that?

It can be really tricky. We try to anticipate things ahead of time and we have a consent form that's used in fertility treatment in general and is also used in oncofertility.

We try to help people anticipate these uncomfortable, unexpected events, what they would want to do, so that we can either have their consent or their assent in the case of a child to get an understanding of kind of what they would want.

So, some of this, we truly prompt ahead of time and say, "What would you want us to do with your sperm if you died? What would you want us to do with your eggs if you died? What would you want us to do with your embryos if one of you died or the other died, or you both died? Or what would you want us to do with your embryos in the event that you divorced?"

Even with married couples, that can be a little awkward to say, but say, "We have a technology of freezing eggs that's just about as effective as freezing embryos. So even though you guys want to have a baby and you're very much in love, would it make sense to just freeze eggs or just freeze sperm alone?" Because once we make an embryo, that's an irreversible . . .

Dr. Jones: Commitment. It's a commitment.

Dr. Letourneau: It's a commitment, yeah.

Dr. Jones: For me, the complicated question, because I have been . . . well, I'm a mom now, but my kid is grown up. But if it's a young person who may not even know how to make that decision, if it's a 14-year-old, can the young person or can the mother ask that the eggs and the sperm from their child be given to the parents so the parents can then use that to try to create the child?

Those are the things that, for those of you who deal with this every day and the sorrow around each family, sometimes you'd say, "I would never do this," but when faced with this family right now, you'd say, "Well, maybe I would."

Dr. Fair: I think these questions are really interesting. They're really complex and perplexing because there's a lot to them. And I think to highlight one of the things you mentioned, what makes them so complex and perplexing is just that they are so dynamic and personal. They really depend on the family. Patients are often put in situations, and that's inherent in cancer, where they weren't expecting or weren't thinking about . . .

I think that's what makes all of this really hard. And this is where I, as an oncologist, really rely on the expertise, both in knowing some of the science, but also knowing some of the ethics and the communication skills around these very difficult topics. When fertility comes up, or what to do when we have collected sperm or eggs and how can and should they be used, I think, are really difficult ones.

And I think Joe and the team at the University of Utah are all excellent at sort of thinking about these things ahead of time, discussing them with families, and then in the rare instance, when these situations arise, I think dealing with them.

But they're really difficult, and I think from my humble opinion in dealing with patients who do die and how their families deal with them, I think grief can take a lot of different forms. So, I do think this is a question, while rare, is very interesting and one that we in oncology and in oncofertility do face.

Dr. Letourneau: I agree with Doug that there are a lot of really complex emotions, and often having someone who's an expert in mental health can be very helpful. Certainly any decisions made around something as serious as a future potential person should be done in a very balanced, sort of sober mindset.

There's a natural grief period where people think about things in ways that they may not have otherwise. So, I think making sure that people have had an opportunity to grieve and they are able to process those emotions and they know that their decision is coming out of a point that really makes a lot of sense to them and is a healthy decision is really important.

I think when people think about this that aren't thinking about it often or in the popular media, or when people ask me at dinner, they do say, "Well, what if someone is about to die? Do you still consider doing this and why? What are they going to use the sperms or eggs for?"

And a lot of times people can be very sick and sometimes they do well and they live for a long time afterward. Sometimes, even for someone who may not have a long predicted duration of their life, improving their quality of life can be really helpful. And this is one of these things that really does help people focus on the future, and it helps to improve their quality of life. So, we see a benefit to fertility preservation and these oncofertility services and at least in education for really anyone who's facing a significant illness.

Dr. Jones: Well, I think you two as young clinicians . . . I won't say how exactly young you are, but I'm an older clinician. You are now, through this oncofertility consortium and program, at a place psychologically or ethically that it took me 30 years to get to. I had to evolve as a clinician now. I think older clinicians tend to be a little more rigid in their thoughts, but you guys have evolved with the technology and the options and the hope.

You both speak from a depth of experience and I think optimism about autonomy, much more than I would have. I'm really encouraged about your approaches as young people, and it's really a wonderful thing to hear. So, thanks for joining us.

Infertility Affects 1 Out of 8 Couples

I think that having children connects you to the circle of life, and it's part of our sense of being larger than ourselves. Our spirituality perhaps is the circle of being born, of having children, and of dying and having our children continue the circle of having children and then dying.

For some people, that part of this spiritual journey of being part of something bigger than they are, by having children, raising children, and watching their family, their heritage, and their future be perpetuated is a big part of their overall sense of the world and what's right in the world.

For people who want children and are working hard to have children, our goals here in our fertility center at the University of Utah, and around the country for people who do infertility services in an honest way, I think that we recognize the importance of helping people meet these personal goals. It's not just like a new car. It's bigger than that. It's fulfilling a personal and often spiritual goal.

So, I think the hard part of walking through the infertility journey is feeling that you're alone. Often, people don't talk about it because of the blame and shame. They don't talk with their friends that they've been trying for over a year, or they've had a couple of miscarriages.

And I'm extremely grateful to Michelle Obama, who in her big book "Becoming" really had a chance to talk to her audience of readers . . . and there are many readers because it's been number one on "The New York Times" bestseller list for a long time . . . that she had several miscarriages before she finally became pregnant with both of her daughters, with her husband, Barack Obama, through in vitro fertilization.

So, the ability of the First Lady, after her First Lady-ship, to come out and talk about how painful her own fertility journey was, how painful miscarriage was, and how difficult the processes were going through in vitro fertilization and a very busy couple, I think that's helpful.

It turns out that infertility becomes part of the lives of one out of eight couples. You don't always know that. Even though people are asking all the time, "Well, when are you going to have kids?" you don't know that they may have been trying for two years and you just sent an arrow into their heart. But if people share their story, they won't be so alone.

We have technology that will help the majority of people with infertility have a child one way or the other, but only you can help yourself with the emotional, social, and spiritual aspects of being part of a bigger community by sharing your struggles.

If you feel comfortable, if within your culture it's okay to talk about, you'll find that your friends will be right there with you. Your mom, your parents will be there saying, "Well, it happened to me," or, "I had two miscarriages too," things that you just didn't know about. So, it's part of the human experience, and one in eight couples experience it.

Get help not just from us as your healthcare providers and specialists, but get help from your community because they'll be there to back you up when that pregnancy test is negative again.

And lastly, but not least, the infertility haiku.

 

A baby maybe?
Let's start now, tonight, tonight
No luck, yet again

 

And so, as I said at the beginning, infertility touches all of the seven domains in a powerful way. And I think that we're here to help and I think that as we learn more about the different parts of how infertility touches our lives, we can be more helpful to our patients. You listeners can be more thoughtful to your sons and daughters, people who are struggling, your friends with infertility, and understand that it's really a big part of much of their life.

So, thanks for joining us on "The Seven Domains."