Determining the Fate of Frozen Embryos

SOURCE:  by Paul Ford, www.elle.com

March 24, 2014 – When my wife and I did in vitro fertilization, the doctor put two blastocysts in her because that bettered the odds that one would take. He handed my wife a picture, two lumpy circles in black-and-white on slippery thermal paper. They looked like rice cakes. Blastocysts are early embryos. These had been fertilized five days prior — which, because we’d actually fertilized four of them, left two embryos for later.

So in one of the surprises of my married life, my wife and I became custodians of about 200 cells that reside in a freezer at a clinic in New York City, not far from Times Square. They were bathed in a special solution and slow-frozen, with care taken to avoid the formation of ice crystals. This is called cryopreservation. They are surrounded by liquid nitrogen. We pay $100 a month, $50 per embryo, to store them. We don’t have pictures of them, but I imagine they look much like the first two. Around a tenth of a millimeter in diameter. Kind of big, actually.

The doctor who did the implantation was handsome. I thought it was insensitive of the clinic to insert him into the situation. My wife, filled with hormones, was puffy and tired. I had been abusing myself into a plastic cup with sharp edges. We’d been trying for three years. Did the doctor have to be a beautiful man?

He moved so smoothly. He came into the room as if he were on an invisible Segway. He fiddled with a plastic tube, and on the ultrasound two points of light appeared on the gray, pixelated screen that apparently showed the wall of my wife’s uterus. When he was done, he drifted away in silence, leaving us there: two people oscillating between despair and hope, my wife in her gown with her knees up, and me petting her hand.

Some time passed and then we got up and went home. Everything is so anticlimactic.

A few weeks later I was leaving a meeting in Manhattan amid thousands of people headed in their respective directions and my cell phone rang. “My beta is good,” my wife said, meaning the levels of human chorionic gonadotropin in her blood. The world stopped then. We were too confused to write down that number, but two days later the level was a very good 739, and my wife entered the number into her fertility spreadsheet (she likes detail). We were out of the middle of something and back to a beginning.

The first option we considered with our remaining embryos was to do nothing. Just leave them on ice and make a decision later. They can stay frozen for a long time — in 2005, a child was born from an embryo frozen 13 years earlier — though our clinic recommends waiting no more than seven years. We asked, “What happens if we don’t pay?” The doctor shrugged. “Would you destroy them?” The doctor shook her head. In my experience fertility doctors shrug a lot. There’s a lot of guesswork. Of course they keep billing you.

No one knows exactly how many embryos are out there, in liquid nitrogen. The low-end estimate is hundreds of thousands in the United States, but some people say as many as a million. It’s a pretty good business; think of the $1,200 a year we pay. So it could come to something like $600 million a year in freezing.

Six weeks into the pregnancy came an awful and graphic night. I sat in the empty tub while my wife sat on the toilet, too exhausted to cry. We guessed she was miscarrying. “It’s okay,” she said as we walked into the clinic early the next morning. “We know I can get pregnant. We’ve got the others. We can do this again.”

The three most judgmental places on earth are (1) the Vatican, (2) Park Slope, Brooklyn, and (3) Facebook. My wife and I live near Park Slope and spend too much time on Facebook. So we get hit twice.

I have never seen judgment like this. Not so much from the fathers. The fathers come later, screaming at soccer games. But the mothers…breast-milk absolutists, attachment theorists, potty trainers of four-month-olds, advocates of teaching kids to read from birth, advocates of bi- or trilingual education, sleep trainers (but also those who believe sleep training turns children into serial killers), passionate fans of baby sign language, mothers who disdain nannies but like day care. Being a mother means that you are always doing something that someone thinks is horrible. It’s like wearing sweatpants to a wake.

Those judgmental people were there all through the fertility process, telling my wife that she should never drink, or that she should calm down and have a few drinks, that we should just have more sex, that we needed to try harder, that we should adopt. We researched it: Adoption is so grueling and ethically fraught that it makes fertility treatments look like a frolicsome dance in a wooded glen. “What about foster care?” asked people who had no idea about the foster-care system. The people who knew the least were generally the most willing to offer counsel. (Some unsolicited advice: You can best help someone struggling with her fertility by being quiet. “Ah, but what are you doing about gluten?” you might ask. No. Not gluten. Quiet.)

Those years when I was required to be a man, a grunting, stupid man, saying positive, hopeful things to my increasingly insane wife, I saw babies everywhere. Since we’ve had twins, I see even more babies. I know from babies now. I know from uteruses and fertility technologies and kids running in circles. God, I love babies. Their soft little feet and their perplexed faces. Breast-fed or not. Sleep trained or not. The babies are fine. It’s the parents who are another story.

Destruction is the second option. It sounds dramatic, but when we asked the doctor what would happen, she shrugged again, as if to say: They just thaw. You take them out of the freezer, throw them out with the medical waste. That’s that.

This presents a terrible problem if you believe life begins the moment sperm and egg meet. I don’t know when life begins. If you think the picture of the rice cake is a picture of a baby, I’m not going to dissuade you now.

People do complex things to deal with this issue. Some women have the embryos implanted during an off time in their cycle, so that they don’t attach and instead pass out of the body “naturally.” Some take them away from the clinic and have a ceremony. I’ve only read about these options. They aren’t explicitly offered by our clinic.

One day I went to pick up my kids from day care and loaded them into their giant stroller, the size of a French car. Suddenly I looked at my daughter and was convinced that she was some other child. What if the day care had switched her with a similar-looking girl? What if I’d had some kind of stroke that kept me from recognizing my daughter? I couldn’t sort it out, even as I walked home with full knowledge that I was both tired and crazy. She was too young to talk, so I couldn’t ask her.

I solved the problem by taking a picture of her with my phone and comparing it to other pictures of her. She was indeed my daughter. She looks quite a bit like me.

A paternity-testing clinic a few blocks from where I live has a sign showing a happy blue-eyed baby under the words: Does he really have his father’s eyes?

The third option is to use the fertilized eggs to try to have more children. We already have twins. Soon we’ll be 40. Twins are more than enough. “Wouldn’t it be a blessing to have another?” we joked during their first year. Then we traveled by air from New York to California with them, just before their first birthdays. Turns out we were good on blessings.

When I first moved to New York City I was 21, and I worked with a woman in her early thirties who was trying to conceive. She was my first example of a woman who wanted a baby with every fiber of her being. She scared me.

She told me she was adopting a child from China. She and her husband interviewed with officials and transferred funds, until basically all of their money was gone. (A thing you learn about adoption: They don’t give you your baby until you have given over all of your money.) One day they got a call saying that their daughter was waiting for them at an orphanage. She was just a few months old.

“My God,” she told me, “I’m sobbing. There’s my daughter in some orphanage, and I’m here. And now I have to wait a week to fly to China. I’m going out of my mind.” I thought this was the craziest thing I’d ever heard. How could you freak out over a child you hadn’t met? What was the source of this insanity? That’s what I thought back then. Now I understand. The child whom she’d been dreaming of had just become a legal part of her family, but she had to count out time and thousands of miles until she could get on a plane and fly to her little girl. It must have been excruciating.

One day I was exhausted and I picked up my tiny, screaming son, and he sobbed into my shoulder. I thought, I will never be able to unlove you. If he turned out to be the son of, say, a handsome doctor, I would be confused and hurt. But the love would be the same.

A fourth possibility: We could donate the fertilized eggs for research. Perhaps they could be used to find cures for diseases like Alzheimer’s. This thought led us down paths papered over with documents. There are so many guidelines, so many rules that researchers must follow. As the American Academy of Pediatrics dryly notes, there is a “unique developmental relationship between embryos and human persons.” It’s touchy.

It also turns out there isn’t a huge need for embryo donations. According to researchers, there are more than 1,000 stem-cell lines in play in the medical-research community. They don’t need that many more. Disposal might make the most sense. “Donors may be disappointed by this fact,” blogged one researcher at the California Institute for Regenerative Medicine, “but details matter.”

The final option would be to give them away. Let someone who has reached the end of her rope, fertility wise, but for whom the experience of having a child is paramount, have these tiny cell groupings dropped into her uterus in the hope that they will implant and grow.

Our clinic had an embryo-donation program, but it was new and no one responded to our phone calls. Meanwhile the clinic kept charging us for freezing. So we looked around and found that there are clinics that will accept donated embryos. Many of these places have a religious intent. The National Fertility Support Center in Kentwood, Michigan, which was started as part of Bethany Christian Services, says on its website that donating embryos “offers the chance for life, hope, and a family for the embryo.” There’s also Nightlight Christian Adoptions, with offices around the country and the “Snowflakes® Frozen Embryo Adoption Program.”

The focus on religion, and the words life and adoption, didn’t sit right with us. The registered-trademark symbol bugged us too. The websites made us uncomfortable. I’m sure many happy families are started in those clinics. And people are welcome to their beliefs. Just not to our embryos.

My wife and I discussed the options. We decided: We don’t want them to be destroyed; we went through all that trouble to make this happen. So we gave our clinic another try. It was strange to go back as parents. The clinic had become a less mysterious place. I realized that when we were going through treatment I’d always felt like a child; always being told to go somewhere, do something. There was a sense of dread and hope and a constant fear. Now the place was just a waiting room.

The doctor gave us the phone number for the woman in charge of the donation program. The clinic charged us a $50 co-pay for that consultation, but finally we knew who to talk to.

The woman was very nice. It’s a new program for women who want to carry a child but can’t do so without both donated egg and sperm. We’d be the first to donate, which seems very odd — it’s a big clinic in New York — but there it is.

To participate we’ll need to become retroactive sperm and egg donors. (I’m married with young twins. All sex is retroactive.) This means filling out forms, giving up all rights to the embryos, and giving blood. And it means we will know nothing: We will not know when the eggs are implanted, if they are, or if they take, or if children are born.

We are allowed to insert a notarized letter into our file, so that if a baby arrives and the rules change, that child could look us up sometime in the distant future. But it’s most likely we’ll never know what happens. I imagine it will be something we talk about every now and then, when something jogs our memory. “I wonder if….” Maybe someday I’ll get an e-mail from a stranger.

I do worry that the person who gets our cells will be one of the mean, judgmental parents, critical of other mothers, critical of the child. Of course my wife and I are raising our children by rules of our own. I’m sure people sneer at us for sleep training our children, and yet they go happily to bed at 6:30 every night and wake up at seven every morning. Maybe once a week one cries at night. It has been that way from month three.

Do we feel superior? Yes. Do we wish to share our wisdom? Absolutely. Do people make cruel comments about our selfish, insular little twin universe? Of course they do. It’s the way of parents to mock other parents. It doesn’t mean the other parents don’t love their children. If some woman is willing to allow the fertilized eggs of strangers to be transferred to her body, then she’s made it clear that she wants to love. Which is all we can ask. If we can make a little more love, well, isn’t that the right thing to do?

The embryos are our responsibility, but not our possessions. Fatherhood and motherhood happen in the space, the gaps, between these children and me. I mean this literally: The motion of a spoon from bowl to mouth and back again; pushing toy cars around on the floor; saying no and snatching a small hand away from a cat’s tail; saying no and pulling a child back from the other child she’s hitting; saying no and listening to sobs of protest as I close the dishwasher; but most of all, saying yes. That is how they got here, these children. Because we kept saying yes.

Just as I worry that we are handing the embryos over to weird parents, I worry that we are giving someone children with problems. The first two are in great health, but what if the other two aren’t? Will the mother feel cheated?

You meet kids with developmental issues, or kids with serious illnesses. The parents have gone a little off, exhausted by the stress. They are tired and often curt. Whatever they’re doing is the best they can do, and you think, I can’t imagine. But of course you do imagine. When you see the kid with the extra chromosome, you see that it’s the same exact love that you know. It’s all the same love.

We are handing over to providence, to some mother now or years from now, or maybe never, possible brothers or sisters to our twins. We release them via paperwork and blood samples. Someone else can fill that beautiful gap.

 

 

 

 

She was always saying things like this, things that broke my heart while reminding me of how insanely privileged we were to live in an era when this sort of science exists, and to be able to afford access to it. I felt both sad and selfish.

The doctor we saw that morning was a small woman in expensive leather boots. I knew how she could afford them. My wife climbed onto the table and the doctor inserted an ultrasound wand. I inhaled, expecting to learn that we were back to the beginning.

“There’s the heartbeat,” said the doctor, pointing to a tiny white set of throbbing pixels. A heart. She fiddled a little more, moving the wand. Over to the left, she found another group of pulsating pixels. With a slight lilt in her voice, she said, “You have twins.”

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

New research supports long-held beliefs that length of cryostorage period does not impact embryo survival

SOURCE: Journal of Assisted Reproduction and Genetics April 2014, Volume 31, Issue 4, pp 471-475

A recent article in the Journal of Assisted Reproduction and Genetics concluded that storage time did not influence the survival and pregnancy outcomes of slow-frozen early cleavage human embryos. The developmental potential of cryopreserved human embryos with different storage times does not appear to have a negative influence on further development.

Access the article on SpringerLink

Delaying Pregnancy Becomes New Normal

May 9, 2014 – NBC news

On the NBC news segment titled, “Delaying Pregnancy Becomes New Normal”, anchor Brian Williams said, “Women are waiting longer to have children if they can afford to” and cited that in the last decade, there’s been a 35% increase among women, ages 40-44, having children for the first time and up 900% over the last 4 decades in women over 35 having their first child. With the American Society For Reproductive Medicine’s lift of the “experimental” label on egg freezing last year, it is evident that a growing number of women are freezing their eggs at a younger age. The segment adds that many call egg freezing “insurance against an uncertain future”.

View the full broadcast on NBCnews.com.

 Sperm banking rates increase with counseling for cancer patients

 May 28, 2015 – Article courtesy of http://www.satprnews.com

New Orleans – Fertility counseling for men with cancer, prior to initiating treatment, can increase the rate of sperm preservation, according to a new survey presented during the 110th Annual Scientific Meeting of the American Urological Association (AUA). The research was highlighted by study authors during a special press conference. Tobias S. Kohler, MD, MPH, FACS, associate professor of Surgery at Southern Illinois University moderated the session at the Ernest N. Morial Convention Center in New Orleans, LA on May 17, 2015.

Chemotherapy can cause infertility in men, affect his quality and number of sperm produced and can be temporary or permanent. If it is temporary, men will become fertile again once they have finished treatment, but may vary by person. However; despite the understanding that chemotherapy can lead to permanent infertility, many clinicians fail to incorporate fertility preservation for cancer patients prior to treatment. With this in mind, researchers at Brown University, Providence, RI, compared the likelihood of newly-diagnosed cancer patients preserving their sperm after receiving a formalized fertility counseling session versus those who did not.

 

Evaluating a single institution, researchers conducted a retrospective chart review of 411 men, with an average age of 42.3, with newly-diagnosed cancer, from 1998 – 2003, prior to the start of their chemotherapy treatment. The study found a significant increase in sperm banking rates among patients who received fertility counseling as part of a standardized nursing education program, compared to those who did not. Furthermore, after the initiation of counseling, the odds of sperm banking increased 2.9 times for those who received counseling. Also important to note, the odds of sperm banking among these patients were increased 3.8 times for those who did not have children.

Further research showed: “These findings shed light on one of the many important roles counseling plays for newly-diagnosed cancer patients,” explained Dr. Kohler. “Often fertility preservation is the last thing on a patient’s mind when diagnosed with cancer, so it’s particularly important to implement counseling and education services prior to the initiation of treatment.”

Study Details
Publication Number: PD52-11

Read the full story

Industry’s Growth Leads to Leftover Embryos, and Painful Choices

For patients with low fertility, embryo donations and IVF centers provide the hope of still having a family one day despite less-than-ideal circumstances. As recently reported in the New York Times article, Unused Embryos Pose Difficult Issue: What to Do With Them, these services continue to rapidly grow in popularity. In fact, IVF procedures now account for more than 1.5% of all births in the United States. Once an embryo is created, it may take one or several procedures to achieve pregnancy. But what happens with the unused embryos once the ultimate goal is achieved?

This has been an issue facing IVF center patients for years and what is most prominently discussed in the New York Times Article. Many patients opt to continue freezing their embryos for future pregnancies, or they donate them to other families that desire to have children but are facing fertility issues of their own. Others choose to dispose of the embryos, or let the IVF or freezing center make the decision for them. There are a multitude of options for unused embryos, but in many cases, all patients need is time to decide what is best for them.

For patients facing this decision, ReproTech is ready to help determine the best embryo storage plan, whether it’s for one year or decades. IVF centers are generally much costlier than long-term storage facilities and are not equipped to handle long-term storage because of their focus on other services. At ReproTech, storage is all we do, and we’ve been the industry leader in long-term reproductive tissue storage for 25 years. We offer safe, cost effective long-term storage so patients can take the time to make the right decision for them.

To read the New York Times article, click here.

ReproTech appoints Medical Advisory Committee member

August 13, 2015 – ReproTech, Ltd., the leading cryobank specializing in long-term storage of human reproductive tissue (sperm, eggs, embryos and ovarian and testicular tissue), announces the appointment of Gina Davis, M.S., L.C.G.C., as a member of its Medical Advisory Committee. Ms. Davis is a licensed, board-certified genetic counselor, who specializes in the field of reproductive medicine.

ReproTech’s Medical Advisory Committee is comprised of distinguished experts who represent a comprehensive range of experience and knowledge in the Reproductive Science and Fertility industries. The mission of the Committee is to ensure that ReproTech adheres to the highest standards and protocols as it further develops its business. The Committee promotes education and awareness in the medical and scientific community, and approves all educational materials that are distributed to patients and physicians.

Current members of ReproTech’s Medical Advisory Committee include its Chairman and ReproTech’s Medical Director, J. Bruce Redmon, M.D., who serves as an Associate Professor, Department of Medicine and Urologic Surgery at the University of Minnesota; Randle Corfman, Ph.D., M.D., Founder and Medical Director of Midwest Center for Reproductive Health in Maple Grove, MN; Marybeth Gerrity, Ph.D., M.B.A., President of Reproductive Biology Resources, Inc., Chicago, IL; Mark Janzen, Ph.D., Senior Director of Laboratories at Memorial Blood Centers in St. Paul, MN; Kyle Orwig, Ph.D., Associate Professor of Obstetrics, Gynecology and Reproductive Sciences and Director of Magee-Women’s Research Institute’s Fertility Preservation Program at the University of Pittsburgh, PA; Sally Sibbitt, M.S.W, L.I.C.S.W, Infertility Counselor, Minneapolis, MN; Jacques Stassart, M.D., Founder and Director of the In Vitro Fertilization Program at Reproductive Medicine and Infertility Associates in Woodbury, MN; and Ms. Davis, founder of Advocate Reproductive Genetic Counseling.

 

Preserving The Fertility Of Young Chemo Patients

Six-year-old Mylah Bryant has a blood disease (aplastic anemia) that required chemotherapy and a bone marrow transplant at Cincinnati Children’s Hospital Medical Center.

Not only did doctors discuss making her well, they asked her parents if they wanted to preserve tissue so she could reproduce years later without the damaging effects of chemotherapy.

It was a lot to think about, according to Mylah’s dad Matthew, but because his daughter jokingly said “she wanted 1,000 children,” he knew being a mother was important to her. This decision was on top of other decisions he and his wife needed to make.

“A lot of paperwork signing. You do the consents and somebody says ‘hey what do you think about taking out your daughter’s ovary?’ Um, ok, and so we kind of left it at that. There’s a lot of information, a lot of it is a blur.”

It was Children’s Fertility Navigator Olivia Frias who introduced the idea to the Bryants and explained the specifics. She sees about seven to ten new patients a week. She says, “Of course there’s so many emotions, a malignancy or maybe they have found some type of blood disorder that’s going to warrant them a BMT (bone marrow transplant). But at the end of the day parents are very enlightened when they hear about this information and they are thankful about hearing about this.”

The Children’s Comprehensive Fertility Care and Preservation program team has been together since 2009 and today only a handful of hospitals offer it. Dr. Lesley Breech is director of the division of gynecology.

“Our philosophy is that every new patient to our cancer and blood disorders institute have a fertility consult and we would meet with them and talk about the options for that age patient or if the patient is after puberty or before puberty… all those implications about what choices would be available for the patient or the family.”

Breech says no patient is really too young or too old. Deciding to remove ovarian or testicular tissue or eggs or sperm depends on how great the risk from chemotherapy and radiation will be.

The Options:

  • pubertal boys: sperm banking.
  • pubertal girls: egg freezing.
  • pre-pubertal boys: testicular preservation.
  • pre-pubertal girls: ovarian tissue cryo-preservation.

The removal and processing is not cheap. At the hospital it can range from $5,000 to $15,000. Storage at places like Reprotech is $200 to $400  a year. But Dr. Breech says there are charitable organizations that help with the cost.

Since 2012, Children’s has performed 40 such procedures. The families who choose to do it must agree to donate 20 percent of the material to research. They keep 80 percent. Frias explains, “So that 20 percent is going off to the research world and what does that mean for the parents? Are there going to be babies running around with their child’s DNA? That can always be a concern and we do our best to reassure them that is not the case at all. This is strictly for research purposes.”

The material is stored at Reprotech until the patient wants to become pregnant.

Fertility preservation is still experimental but doctors in Belgium report this year the first live birth by a 27-year-old woman who had ovarian tissue preserved when she was 13 before getting chemotherapy for a bone marrow transplant.

Child cancer patient in Kansas City freezes ovarian tissue

Source:  www.cjonline.com

February 10, 2017 – At 8 years old and with leukemia, Jhayliegh Rosales is years away from thinking about having her first baby.

When the ebullient second-grader checked into Children’s Mercy Hospital recently in preparation for a bone marrow transplant, she’d placed a pink cap over where her brown hair used to be. In brave declaration of her future, she wore a T-shirt printed with “WATCH ME WIN” as she rolled through the hospital’s halls, balancing inside a new pair of silver high-top sneakers embedded with wheels like roller skates.

“She just got those,” said her father Daniel Rosales, 28, a milk delivery truck driver from Ulysses. “They ought to keep her busy.”

Rosales and Jhayliegh’s mother Alyssa Lopez, 27, of Garden City, Kan., had to do some significant balancing of their own regarding Jhayliegh’s future — as a mother.

In late December, Jhayliegh became the youngest person in the Kansas City area to undergo a procedure, still considered experimental, in which ovarian tissue was surgically removed and frozen in the event that 15 or more years from now she may want to have biological children of her own.

Source:  www.cjonline.com

February 10, 2017 – At 8 years old and with leukemia, Jhayliegh Rosales is years away from thinking about having her first baby.

When the ebullient second-grader checked into Children’s Mercy Hospital recently in preparation for a bone marrow transplant, she’d placed a pink cap over where her brown hair used to be. In brave declaration of her future, she wore a T-shirt printed with “WATCH ME WIN” as she rolled through the hospital’s halls, balancing inside a new pair of silver high-top sneakers embedded with wheels like roller skates.

“She just got those,” said her father Daniel Rosales, 28, a milk delivery truck driver from Ulysses. “They ought to keep her busy.”

Rosales and Jhayliegh’s mother Alyssa Lopez, 27, of Garden City, Kan., had to do some significant balancing of their own regarding Jhayliegh’s future — as a mother.

In late December, Jhayliegh became the youngest person in the Kansas City area to undergo a procedure, still considered experimental, in which ovarian tissue was surgically removed and frozen in the event that 15 or more years from now she may want to have biological children of her own.

The Kansas City Star (http://bit.ly/2laWequ ) reports the procedure has become common in adults, but it is not in prepubescent children, having expanded only within the last five years. Of the 30 research hospitals in the United States approved to do ovarian tissue cryopreservation (“cryo” meaning freezing), only 15 are approved for patients under age 18.

The University of Kansas Health System became one of those sites in May, when it was selected to become part of the Oncofertility Consortium. Run out of Northwestern University, where it began in 2007, the consortium is a global network of hospitals, researchers and physicians dedicated to preserving fertility in women, men, girls and boys in whom disease or treatments — particularly the chemotherapy used to battle cancer — might otherwise leave them sterile.

Consortium Director Teresa K. Woodruff said some programs are taking tissue from the testicles of prepubescent boys battling cancer. Others are freezing ovarian tissue from cancer patients as young as 1 or 2 months old.

“The reason that fertility has come up as such an important issue is that many people are surviving their cancers,” Woodruff said. “We talk about losing hair follicles, but we never talk about losing ovarian follicles.”

The promise of ovarian tissue freezing became evident in December with the birth, in England, of what was reported to be the first baby born from ovarian tissue removed from a patient when she was 9, before she had entered puberty. It was frozen and re-implanted 13 years later.

The mother, 24-year-old Moaza Al Matrooshi from Dubai, gave birth to a healthy son named Rashid. As a child, Al Matrooshi had been diagnosed with an inherited blood disorder called beta thalassemia that reduced her ability to carry oxygen in her blood. At 9, she received a bone marrow transplant from her brother. The chemotherapy needed for the treatment led to her infertility.

Lopez, Jhayliegh’s mother, said she first heard of the possibility of cryopreserving her daughter’s ovarian tissue from her oncologist at Children’s Mercy, Dr. Joy Fulbright. KU Health System and Children’s Mercy were working in cooperation.

Lopez said knowing that her ill daughter might one day have the ability to have her own biological children infused a long and difficult journey with a current of hope.

“You don’t typically think of your 8-year-old having kids because it is so far off in the future,” said Lopez, who with her husband Pablo Lopez raises both Jhayliegh and their 4-year-old daughter, Aziyah. “But when you’re going through this, you have to think of the future.

“I know if she wants to have kids of her own, this will give her an option.”

“Every bit of hope. That’s what we want for her,” Rosales said.

Jhayliegh was 5 years old when she was diagnosed in October 2013 with acute lymphoblastic leukemia, a type of blood cancer.

“She had always been healthy,” her mother said. “One night, she was just telling me her right side was hurting. It was kind of on and off throughout the day. But then around 7 p.m. I took her to the emergency room.”

Lopez, who had been employed in a lab drawing blood, had thought her daughter might have appendicitis. A fever was spiking near 104 degree. Soon after her lab tests came back, the doctor said Jhayliegh needed more blood work and immediately put her in an ambulance to see a specialist at a hospital in Wichita, more than three hours away.

The doctor had mentioned the possibility of cancer.

“The whole way there I was praying it was a mistake,” Lopez said.

It wasn’t. Jhayliegh had acute lymphoblastic leukemia with a genetic anomaly that would complicate her treatments. For the next two years and eight months, she endured rounds of chemotherapy that sapped her energy and took her hair.

“It was in June that she was supposed to have gotten her last treatment,” Lopez said, referring to last year.

Attuned to her daughter’s body and the signs of leukemia, Lopez soon began to notice some telltale bruising.

“She relapsed in November,” Lopez said.

Soon after, the physicians at Children’s Mercy told the family that Jhayliegh would need a bone marrow transplant. But this time, the more intensive chemotherapy and radiation would likely destroy the egg-producing follicles in her ovaries and her ability to one day become pregnant.

Children’s Mercy obstetrician and gynecologist Julie Strickland surgically removed the ovarian tissue in late December. Because the procedure is still considered experimental, insurance does not cover its cost, estimated at about $3,000, plus monthly storage fees for freezing. Jhayliegh’s bone marrow transplant is scheduled for this week.

“While immediately, in a child, surviving their disease is the most important priority,” Strickland said, “many families experience great angst about the possibility that, if their child survives, that they would not be able to go on and have children of their own.

“So the reason we’re doing this now is that we do have hope that children will survive their cancers . and we know from our survivors that this (fertility) is a very important aspect as they become adults.”

Jhayliegh’s ovarian tissue now sits safely in a tissue bank in Minnesota, frozen at minus 196 degrees Fahrenheit. At KU Health System, reproductive endocrinologist Dr. Courtney Marsh said the ovarian tissue can remain safely frozen for decades.

“There is no time limit,” she said.

As Jhayliegh ages, she will be required to take hormone injections to go through puberty. When a patient is old enough to want to get pregnant, the idea for many would be to re-implant the ovarian tissue. Woodruff of the Oncofertility Consortium said that in Jhayliegh’s case, that likely would not happen; with a blood cancer such as leukemia, it is possible that the ovarian tissue might contain active cancer cells even after decades of remaining frozen.

Re-implanting the ovarian tissue, she said, would risk reintroducing her cancer.

Jhayliegh, Woodruff said, will need to count on advances in medical technology. Instead of re-implanting the ovarian tissue itself, researchers are now investigating ways to stimulate the tissue with hormones to produce viable eggs in a test tube or petri dish.

Physicians might then implant any number of the patient’s own eggs. Or, using in vitro fertilization, they might combine those eggs with sperm to create implantable embryos.

“That really is the future for this 8-year-old,” Woodruff said. “The good news is we know we’re storing tissue in a way we know can give rise to live, healthy offspring. She has 20 years for basic science to become medical reality.”

“The beautiful thing is that this was her only chance. … She had a lot of intense cancer treatment coming up,” Marsh said. “She will likely have no ovarian function at all. We’re thinking of this as a medical treatment, giving her a quality of life.”

That’s what Jhayliegh’s mom and dad are hoping for.

“When you’re going through something like this, you have to have faith,” Lopez said. “I do believe everything is going to end well. It is good to hear about them talking about her future.”

Facing a cancer diagnosis: empowering parents to speak with adolescents about sperm banking

December, 2017 – Article courtesy of Fertility & Sterility, Vol. 108, Issue 6, Pages 957-958

Both pediatric oncologists and reproductive urologists share
a joint responsibility to educate, treat, and advocate for male
adolescent and young adult (AYA) cancer patients who
require gonadotoxic therapy. The importance of fertility
preservation coincides with the ever-growing number of
pediatric cancer survivors, because most children now survive
their malignancy into adulthood and ultimately desire
family building. Unfortunately, the risk of infertility in
this population is remarkably high.

Green et al. reviewed the Childhood Cancer Survival Study cohort, ultimately
including 6,224 men in their final analysis (1). Compared
with healthy siblings, pediatric cancer survivors were
roughly one-half as likely to have fathered children (hazard
ratio 0.56, 95% confidence interval [CI] 0.49 to 0.63). The
reproductive consequences were greatest with the use of
alkylating agents and when radiation involved the testis.
Fortunately, the solution for fertility preservation is often
straightforward for boys who have entered puberty: preemptive
sperm banking before any exposure of a reproductive
insult.
For parents and male AYA patients facing a new cancer
diagnosis, the process of sperm banking for future fertility
can be overwhelming. In addition, the providers meeting
with these patients may not feel comfortable with broaching
the subject or are not prepared to practically facilitate
referral (2). These conditions have resulted in poor rates of
sperm banking for adolescent cancer patients, which have
been reported to be as low as 17.8% by one large retrospective
series (3). The low rate of utilization represents
failure of counseling on the part of the treatment teams
despite clear guidelines from organizations including the
American Society of Clinical Oncology, the American Society
for Reproductive Medicine, the National Comprehensive
Cancer Network, and the Association of Pediatric Hematology/
Oncology Nurses (2, 3).
Several groups have attempted to identify the barriers
related to fertility preservation in pediatric oncology. To
better understand these impediments, one must first appreciate
the unique perspectives of providers, parents, and the
patients themselves. Fuchs et al. petitioned the attitudes
and practices of 326 oncology providers, which included
physicians, nurses, and advanced practice nurses (2). Within
their cohort, 92% of respondents reported no history of
formal training in fertility preservation. Consequently,
only 48% of providers were familiar with intracytoplasmic
sperm injection, a basic fertility intervention available to
these patients and a marker of overall understanding.
Although 93% of responding physicians reported routinely
discussing fertility preservation with their adolescent
patients, only 78% reported feeling comfortable with the
topic. It is intuitive to suspect that sperm banking outcomes
coincide with provider competence and comfort with the
material.
In addition, it has been observed that the provider’s
perception of the parent(s)’ and patient’s interests in
fertility preservation often does not align with their actual
attitudes and concerns (4). Providers tend to focus on expediting
treatment because they typically believe that parents
prioritize timely oncologic therapy over fertility. Clinicians
may also perceive many adolescent males to be uninterested,
embarrassed, or too immature to consider sperm
banking. Unfortunately, these misperceptions result in superficial
and brief discussions of future fertility. Meanwhile,
parents are rarely embarrassed to discuss the
subject of fertility and are appreciative of the dialogue.
In the parents’ minds, prioritizing expedited cancer treatment
is not mutually exclusive of fertility preservation,
which is actually interpreted as a sign of hope. Also, it is
now well known that many adolescent male patients are
interested in future family building and prefer engagement
in these types of discussions. Common to both patient and
parent is the hindsight desire that providers be more
proactive.
Stein et al. broadened our understanding of attitudes toward
fertility preservation by attempting to separately characterize
the perspectives of patients and their parents, and if
they exist, any conflicts of interest among these stakeholders
(4). Both parties expressed significant regret that
fertility preservation was not adequately addressed at the
time of cancer diagnosis. These feelings became most
apparent to the patients as they survived their diagnosis,
began relationships, and started to entertain the notion of
family building with their partners. Many patients stressed
their immaturity at the time of treatment and the need for
both provider and parent to propel fertility preservation as
a worthwhile objective. Parents, however, often perceived
that their children were much more equipped for these conversations.
This discordance between the patient’s actual
maturity and their maturity as perceived by their parents
may give the AYA patient inappropriate responsibility for
driving fertility preservation as a priority (4).
In this issue of Fertility and Sterility, Klosky et al. elucidate
the impact that parental influence has on fertility preservation
outcomes (5). These data are clinically relevant
because parental factors can be influenced through appropriate
counseling. Within their cohort, 55% of patients attempted
sperm banking, for which 83% successfully
resulted in cryopreservation of a sample. The authors demonstrate
that parents who actively recommended sperm banking
to their children imparted an odds ratio [OR] of 3.7 (95% CI
1.18–11.76) in favor of attempted banking. The significance
of this relationship was more pronounced when the recommendation
came from the father, with a resulting OR of 8.3
(95% CI 3.0–22.8). Finally, there was a weak but statistically
significant relationship of the parents’ perceived selfefficacy
to facilitate a banking attempt.
The data of Stein et al. and Klosky et al. highlight the
unique environment that exits among male AYA patients
diagnosed with cancer. In contrast to adult cancer patients, treatment of AYA patients requires a much
more coordinated attempt on the part of the treating
provider, primary caretaker, and patient. In addition,
parents need to take more of a leadership role, which
may be facilitated through the guidance of providers.
The parental attitudes as well, especially regarding
self-efficacy, are undoubtedly heavily influenced by
provider guidance and counseling. Likely, the most
noteworthy implication of this study is the required
involvement of not one but both parents, if present, in
the care of AYA cancer patients. It seems that the idea
of a supportive ‘‘team’’ would portend a more comprehensive
outlook and an even higher rate of fertility
preservation. To help facilitate this, both parents and
patients require better provider input, intervention,
and informational resources. Herein lies immense opportunity
to diminish a major barrier to pretreatment
sperm banking.
Future work should continue to explore and define
actionable interventions that clinicians can take during
fertility discussions. Additional future cohorts should also
include underrepresented populations to allow for generalizability,
because cultural and religious differences are likely to
be important. Such studies will allow providers to leverage the
opportunity uncovered by the Klosky et al. data and thereby
ensure that all parents can be empowered to help their sons
to preserve fertility.

Russell P. Hayden, M.D.
James A. Kashanian, M.D.
Department of Urology, Weill Cornell Medicine, New York,
New York
https://doi.org/10.1016/j.fertnstert.2017.09.035
You can discuss this article with its authors and with other
ASRM members at
https://www.fertstertdialog.com/users/16110-fertilityand-
sterility/posts/20650-25060
REFERENCES
1. Green DM, Kawashima T, Stovall M, Leisenring W, Sklar CA, Mertens AC,
et al. Fertility of male survivors of childhood cancer: a report from the Childhood
Cancer Survivor Study. J Clin Oncol 2010;28:332–9.
2. Fuchs A, Kashanian JA, Clayman ML, Gosiengfiao Y, Lockart B, Woodruff TK,
et al. Pediatric oncology providers’ attitudes and practice patterns regarding
fertility preservation in adolescent male cancer patients. J Pediatr Hematol Oncol
2016;38:118–22.
3. Neal MS, Nagel K, Duckworth J, Bissessar H, Fischer MA, Portwine C, et al.
Effectiveness of sperm banking in adolescents and young adults with cancer:
a regional experience. Cancer 2007;110:1125–9.
4. Stein DM, Victorson DE, Choy JT,Waimey KE, Pearman TP, Smith K, et al. Fertility
preservation preferences and perspectives among adultmale survivors of pediatric
cancer and their parents. J Adolesc Young Adult Oncol 2014;3:75–82.
5. Klosky JL, Flynn JS, Lehmann V, Russell KM, Wang F, Hardin RN, et al. Parental
influences on sperm banking attempts among adolescent males newly diagnosed
with cancer. Fertil Steril 2017;108:1043–9.
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