When Men Find Out They Can't Have Children
By: Andrew Zaleski
Tags: Health, Infertility, Fertility, Family, Men

Scott Burkholder lay on his couch, huddled under a blanket, stunned and silent. It was 2018, just a few weeks before Christmas. He had a lump in his throat. Water in his eyes. And a urologist seated by his feet, delivering the news: There was no sperm in his testicles. What many men consider their life’s greatest project — having and raising children — appeared out of reach.

The news landed on Burkholder like a punch to the face. Initially, he was shocked it had happened, then confused as to why, and then, finally, forced to process the accompanying pain. He was happily married and working in Baltimore as a talent agent for emerging artists. He had furnished for himself a rewarding life. And now, this.

“When I heard I needed to go see a specialist, I dragged my feet. I was probably thinking: There’s just nothing wrong with me. Why would I go do that?”

“Here I am, otherwise healthy, but, you know, I’m infertile,” recalls Burkholder, who turned 41 this year.

He and his wife, Jenn, were in their early thirties when they decided to have a child. Eventually, a pattern familiar to fertility doctors unfolded. After a year of trying with no results, Jenn saw her gynecologist in 2014, who referred her to a specialist — and suggested that Burkholder get screened as well.

“When I heard I needed to go see a specialist, I dragged my feet,” he says. “I was probably thinking: There’s just nothing wrong with me. Why would I go do that?”

After Jenn’s doctor didn’t identify any problems, trips to and from urologists dominated Burkholder’s life for several years, as three different semen analyses showed no sperm. In 2018, a surgeon sliced open his scrotum in an attempt to harvest sperm from his testicles. Dr. Amin Herati, his urologist, visited him at his home that night with the results: Burkholder was azoospermic.

“It’s the worst feeling in the world on the doctors that have to deliver that news,” says Herati, director of male infertility and men’s health at the Johns Hopkins Hospital’s Brady Urological Institute. “You take somebody’s hope and expectations of the future and you turn it upside down.”

Azoospermia means semen without sperm

Roughly 15% of couples worldwide deal with infertility, and a male factor contributes to about half of cases, according to the American Society of Reproductive Medicine. One of those factors is azoospermia, which affects 10–15% of infertile males and 1% of men globally. For men with obstructive azoospermia, they have no problem producing sperm in the testicles, but there’s a blockage in the reproductive tract that interferes with the transit into the ejaculate. These cases are fixable. Others, like Burkholder, have the nonobstructive type: The system to carry sperm is fine, but the machinery to make it is deficient. It’s a form of testicular failure, which results in the absence of sperm in the ejaculate.

Not all men with testicular failure can’t be biological fathers: Kallmann syndrome — a genetic disorder that affects the X chromosome of a man’s XY pairing — can cause infertility but is usually corrected with hormone treatments that boost sperm production. For many men, though, the etiology of their azoospermia remains a puzzle, without clear causes or easy answers.

“We are looking for a little more understanding, and then hopefully we can figure out why,” says Dr. Michael Eisenberg, director of male reproductive medicine and surgery at Stanford Medicine. “And if we figure out why, then in some cases, hopefully we’ll be able to fix it.”

As fertility doctors, urologists, and the men affected confront azoospermia together, their collective challenge is two-fold: a search for sperm with a search for self.

Still, all the science of sperm generation and development often misses the deeper wound that infertile men carry. Sometimes urologists will find reservoirs of sperm in the testicle, but about 40% of men diagnosed with nonobstructive azoospermia are never going to have sperm and therefore never be able to have biological children. “It’s like being told you got cancer, man,” says Dr. Paul Shin, director of reproductive urology at Shady Grove Fertility. “The minute you get that news, you don’t hear anything for the next 20 minutes.”

As fertility doctors, urologists, and the men affected confront azoospermia together, their collective challenge is two-fold: a search for sperm with a search for self. What does it mean if you can’t create children with your own genetic material? What sort of legacy do you leave behind? Burkholder is still turning over these questions two years after his diagnosis.

“There were definitely parts of this where I was greatly shaken by the fact that it doesn’t seem I’ll ever have natural children, and it’s very hard to overcome that,” he says. “It just never seemed like a thing that would happen to me.”

A deeper wound

Thin, usually clean-shaven, with tidy brown hair and a strikingly symmetrical face. That’s how I remembered Burkholder, and he hasn’t changed. I met him early last decade, when I was a cub reporter in Baltimore and he was running the business arm of a citywide mural project. He’s kind and curious, the sort of person who enjoys long, rambling discussions, usually over scotch — which he liked so much that he organized a local tasting group out of his own house and once invited me over to try a few.

We hadn’t spoken in years when I got an email from him in July about a new documentary. I figured it was for a new filmmaker he was representing. But Burkholder was the subject of the film, a quick 16-minute biopic chronicling his struggles since he found out in 2018 that he has no sperm. In our conversations, he explained even more, describing a yearslong process to arrive at that diagnosis.

Back-to-back disappointing semen analyses were conducted in 2015 and 2016 before a varicocele procedure in 2017. As many as 80,000 men in the U.S. have surgery annually to correct varicoceles, enlarged veins around the testicles caused by impaired blood flow from the scrotum back to the heart. While pain and discomfort are the main symptoms, varicoceles are also the most common correctible factor of male infertility, according to Herati. For Burkholder, though, the result was unchanged. Once he was healed from surgery and underwent a third analysis: no sperm.

With other options exhausted, Burkholder underwent microTESE surgery in 2018. A urologist slices open the scrotum with a small incision and uses a high-powered microscope to look for swollen seminiferous tubules, which comprise most of the tissue of the testicles. Swollen is usually a good sign that sperm will be found once a urologist takes a tissue sample and inspects it closely. But Herati, Burkholder’s urologist, found nothing.

“Guys usually take it really well when they’re told that they don’t have sperm-ejaculate,” Herati says. At first, the thought is that there’s healthy sperm in the testicles that could be extracted and used to fertilize an egg in a clinical setting. More devastating, of course, is what happens after a microTESE that turns up nothing. At that point, men have to accept that a sperm donor or adoption are their only options.

In the documentary, Burkholder likens his lack of sperm to a lost family member. Through a mess of tears, he told a priest at his church what he was feeling: “I think losing the opportunity to have a child of my own genetic makeup was a loss of someone that I would love, a loss of someone that would love me, a loss of someone who would show me things that very, very few people could show me.”

Feelings of inadequacy

While infertility is difficult for any hopeful parent to weather, it takes on an added dimension when presented to a man who wants to father children. There’s still a lack of openness, and even awareness, when it comes to men and infertility struggles. Most men don’t go to the urologist until there’s a problem, which means they’re not being regularly screened for sperm counts. And for men who find out they don’t have viable sperm, it’s not exactly a topic they’re eager to share with their guy friends.

“They just have to eat it up,” says Paul Turek, a reproductive urologist who treats upward of 2,000 men a year at his clinics in San Francisco and Beverly Hills. “They can’t really go out golfing and say, ‘Shit, I’m infertile.’”

Oftentimes, the inability for men to talk about their condition stems from feelings of inadequacy. Bill Petok, a psychologist in Baltimore who has counseled infertile men since 1985, says it’s especially hard because male fertility gets equated with a guy’s sexual acumen — if he’s “shooting blanks” as the saying goes, it must be due to an inability to perform in the bedroom.

Men that Petok has spoken with also talk about their fertility as a form of gift-giving: They’re able to give something to their wives, and when they find out they aren’t able to do so, it’s not uncommon for them to say aloud that their spouses should leave them and find someone else.

In his own surveys, Turek has found that men in their twenties and thirties who find out they are sterile would willingly trade five years of life just to have the ability to make children with their own sperm. There’s a life trajectory to be followed, and an azoospermia diagnosis does more than just throw up an obstacle.

“You see divorces. You see suicide. You see major depression, just checking out of life for a while,” Turek says. “It is the biggest hit they’ve ever had — and maybe ever will.”

Treating seemingly irreversible cases of azoospermia

Questions of male fertility have gained more purchase in recent years, especially since the publication of a major study in 2017. In a comprehensive analysis of semen samples taken from more than 40,000 men since the early 1970s, doctors at New York’s Mount Sinai Hospital and Hebrew University in Israel concluded that among men in the U.S., Europe, Australia, and New Zealand, sperm counts have more than halved in the last 40 years.

Examining male fertility is not only about giving men a chance to father biological children; it’s also a window into understanding future health. Research indicates that low sperm counts may be a precursor to chronic conditions such as diabetes and heart disease. Whether male fecundity is on the decline is a matter of some debate. Turek, for instance, doesn’t put much stock in the prediction, saying there’s no definitive evidence that there’s been any change in human fertility.

Meanwhile, research continues into correcting seemingly irreversible cases of nonobstructive azoospermia. Why it happens isn’t a total mystery. Fertility specialists know, for example, that microdeletions along the Y chromosome of snippets of genes responsible for sperm production are one cause. It’s possible that CRISPR-Cas9 genome editing might one day be able to repair those chromosomal deletions.

Efforts to create better methods to search for small pockets of sperm in men with critically low sperm counts are also underway. Unique “cell sorting” technology is being developed at Johns Hopkins University to find sperm cells that might be discovered during microTESE surgery but are difficult to trap.

Then there’s the holy grail of azoospermic correction: making sperm. Using stem cells taken from the body, the thinking goes, partially or fully formed sperm cells could be created and then implanted into the testicles. When that will ever happen, if it does at all, is still up in the air.

“There’s a period of time where I thought that we were going to have some of these therapies in the next two to five years — but that was over 10 years ago,” Eisenberg says. “These things take a long time to develop.”

A crucial component in reckoning with infertility: Male support groups

Science is slow and occurs in the future. Meanwhile, life for men who find out they have no sperm continues unabated and often yanks them into the past, into dreams of a life they had for themselves that appears to have vanished. After that fateful day in 2018 when he found out he had no sperm, Burkholder’s mind, he tells me, was clouded by a series of other thoughts. Gripped by a profound sense of loneliness, he wondered about himself and says he questioned whether he was a real man.

After all, male infertility transcends locker-room talk about erectile function and goes to the core of heteronormative identity. In 2016, a pair of London-based psychologists surveyed men with azoospermia and received gut-wrenching responses. “Here I am finding out that I am unable to pass on my genetics,” said one man, “and the biologist in me says, ‘You are worthless, you have no purpose living.’ I was on the verge of suicide for a while.”

Where Burkholder found some solace was in a local men’s group. (The documentary shows a scene where he’s sitting in a circle with other guys telling them about the aftermath of his microTESE procedure.) Petok notes that these types of male support networks — greatly outnumbered by the number of groups that exist for women to come together and discuss infertility — are a crucial component in reckoning with a diagnosis like azoospermia. To Burkholder, it was a place where he didn’t have to hide or run from his diagnosis.

“It’s really just a space where myself and the other gentlemen who are a part of it can think out loud — and probably more significantly, feel out loud,” he says. “That’s what I think was required and needed.”

Within the group, Burkholder was able to have the sort of long, rambling discussion he’s known for, comfortably able to confront basic questions he needed to rethink. Why did he want children? What did he consider a fulfilling life?

When I talked to him this fall, he was trying to process the whole experience through the work he does with artists. Music, painting, film: These are the stories, he says, that will be shared with future generations. But those are other people’s stories.

“Lots of my journey was filled with hope because I still wanted to hold onto the notion of my own genetic child,” he says. “But the journey to fatherhood and family and having a child is probably not going to be the one that I thought it was.”

There’s a marked wistfulness in his voice as he says this. Burkholder is still grappling with these questions, especially as he and his wife talk about fostering or adopting children. But for one small moment — in a most unusual year, with so many life trajectories upended — we sat on the phone, once again having a long, rambling discussion, thinking and feeling out loud.