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Sep 15, 2018

Misconceptions (rebroadcast)

Co-produced with PRX Logo

This episode was originally broadcast on June 3, 2017.

Desperate to have a child, a couple puts its trust in a fertility clinic that promises more than it can deliver. They enter a world where some clinics take unnecessary risks to make them look far more successful than they are in reality.

From reporter Jonathan Jones and Reveal’s Bernice Yeung and Emily Harris.

Dig Deeper

  • Read: When pregnancy dreams become IVF nightmares
  • Read: My wife and I went through IVF. That made me want to investigate it
  • Watch: Is Egg Donation Safe?

Credits

Support for Reveal is provided by the Reva and David Logan Foundation, the Ford Foundation, the John D. and Catherine T. MacArthur Foundation, The John S. And James L. Knight Foundation, the Heising-Simons Foundation and the Ethics and Excellence in Journalism Foundation.

Reveal is a co-production of The Center for Investigative Reporting and PRX.

Transcript

Reveal transcripts are produced by a third-party transcription service and may contain errors. Please be aware that the official record for Reveal's radio stories is the audio.
  Section 1 of 3          [00:00:00 - 00:19:04]
(NOTE: speaker names may be different in each section)
Al Edson: The best way to get all of our stories, without anything in between is just an e-mail, in your inbox. Our investigations changed laws, minds and sure, we'd like to say it, the world.
Al Edson: Be among the first to read them. To sign up just text, "Newsletter" to 63735. Again, text the word "newsletter" to 63735. I'll see you in your inbox.
[00:00:30]

Narrator:

 

This episode is sponsored by Wondery and their new podcast, Dr. Death. Over the last couple of months, investigative reporter Laura Beal has been reporting on a prominent doctor in Dallas, who maimed or killed 33 patients. Dr. Death goes beyond the doctor, and looks at the system that failed to protect those 33 patients at every possible turn.

Narrator:

[00:01:00]

Over the course of six episodes, you'll hear harrowing stories from patients who survived, and the doctors who tried and failed to stop him. It's an incredible story that reveals how the systems we place so much trust in can fail us. Stay tuned to the end of the episode for an exclusive preview.
Narrator: Find Dr. Death on Apple Podcasts, or wherever you listen to podcasts. Visit wondery.fm to learn more.
Al Edson: From the center for investigative reporting and PRX, this is Reveal. I'm Al Edson.
[00:01:30]

Al Edson:

 

In the world of making babies, this summer marks an important anniversary. Forty years ago, Louise Brown, who came to be known as the first test tube baby, was born, in England. Since then, fertility doctors all over the world have used in vitro fertilization, to help women get pregnant. Women like Melissa Pineda.

Melissa Pineda: All we wanted was to hear we were pregnant.

 

Al Edson:

 

[00:02:00]

Melissa and her husband, David, live in southern California. Today, we're revisiting their story, which we first brought you last year. Southern California has one of the highest concentrations of fertility clinics, anywhere.

 

Al Edson: Melissa and David grew up near the Port of Long Beach, where she's a union longshore worker. These days, he's the stay-at-home parent. They got together years ago, in a whirlwind romance.

 

Melissa Pineda: We knew each other growing up as teenagers, but we never dated. Then, we ran into each other at work, and eight weeks later we were married.

 

Al Edson: They started, as a couple, raising children from other relationships.

 

David Pineda: We have these kids, and all of our time and attention, our whole lives are directed at them.

 

[00:02:30]

Al Edson:

 

But, they hoped their family could grow.

 

Melissa Pineda: From the beginning, we really loved each other, and felt like, "We've been blessed," and we were a good team. We were a really good team, and we wanted more babies.

 

Al Edson: But they needed help. So, like many would-be parents, they looked to fertility doctors, to make their dreams come true. Even though David admits he felt conflicted, and anxious, about getting medical help.

 

David Pineda: There's so much more to it than just, "Oh," we woke up one day and said, "Let's have a baby."

 

[00:03:00]

Al Edson:

 

Melissa had some experience with in vitro fertilization, known as IVF. When she was 34, she went to a clinic a friend had recommended, the Pacific Reproductive Center, run by Dr. Rifaat Salem.

 

Melissa Pineda: He made it seem like having a baby was going to be an automatic. I would never have to think twice or worry, because of my age. My health was good, and everything would be fine.

 

Al Edson: Melissa signed up with Dr. Salem, and started taking fertility drugs and hormones, sometimes by giving herself painful injections.

 

[00:03:30]

Melissa Pineda:

 

It's thick. It's oil, and you have to push it through. You feel it going in. You have to alternate your sides, and it's all joyous, because you know this is how you're going to have a baby.

 

Al Edson: The first time, Melissa had a baby, just as Dr. Salem predicted she would. So, four years later she returned to his clinic as a satisfied customer, hoping for another child.

 

Melissa Pineda:

[00:04:00]

I don't want to be the best longshoreman, I don't want to be the best friend, I want to be the best wife, and the best mom. That's what I want to be. That's who I've always wanted to be.

 

Al Edson: She felt ready for the routine. Hormone drugs, eggs removed, fertilization, embryos transferred from a Petri dish into her womb. When Melissa got home from the clinic, she curled up on the couch, surrounded with comfort food.

 

Melissa Pineda: Beans, bean and cheese burritos, macaroni and cheese, eggs ... Everything delicious and good, and that makes me happy and feel good.

 

[00:04:30]

Melissa Pineda:

 

We were all excited to have a baby. All the family.

 

Al Edson: She was nesting there, willing the embryos to take hold, when her cell phone rang two days later, mid-morning on a Sunday. Melissa recognized the number right away. It was Dr. Salem.

 

Melissa Pineda: I answer it, and he says, "Melissa! Melissa!" I said, "Dr. Salem?" He said, "Yes. I need you to come into the office." I said, "I can't. My husband's not home. I'm on bed rest."

 

[00:05:00]

Melissa Pineda:

 

He said, "Well, call your husband and have him bring you in. This is my cell phone number. Call me when you get here."

 

Al Edson: Melissa called David, they drove together to the clinic. The parking lot, with room for 50 cars, was almost empty. When they went inside, Melissa says Dr. Salem wanted to examine her.

 

Al Edson:

[00:05:30]

A nurse named Kate took her to a patient room, where Melissa lay on an exam bed. Melissa describes what happened next. The details aren't easy to hear.

 

Melissa Pineda: He comes in, and he sits down on a roll-ee chair. I could see his bald head between my legs, and I felt a speculum go in there, like a pap smear.

 

Melissa Pineda: Then, all of a sudden, it hurts really bad, and I hold on. I can feel myself tightening, and holding on. Kate's holding my shoulder, and she's like, "Don't move. Don't move. You're doing good. You're doing good."

 

[00:06:00]

Al Edson:

 

But Melissa didn't feel like things were going well, at all.

 

Melissa Pineda: It's hurting. It's burning. It felt like he was ... like when you scrape a pumpkin. When you clean out the inside of a pumpkin, and you just keep scraping the inside, and then you can feel the outside of the thing. You feel it getting weaker.

 

Melissa Pineda:

[00:06:30]

My pelvis was rising, and I can feel him scraping me. It hurt, and all I could say was the ABC's and the Hail Mary, over and over and over again. Then, he stood up, and he walked out.

 

Al Edson: The nurse kept comforting Melissa.

 

Melissa Pineda: I started crying, and I looked at her. I said, "Did he just give me an abortion?" She said, "You're so strong, you're so strong." Then, she unstrapped me from the table, and I was on the gurney. I was crying and everything changed, because I knew something bad happened.

 

[00:07:00]

Al Edson:

 

Melissa didn't know exactly what happened, but she did know that what Dr. Salem had done ensured she wouldn't be pregnant. How did things go so wrong?

 

Speaker 1: Reveal's Bernice Yeung, and reporter Jonathan Jones, looked into this case, as a part of a year-long investigation into America's $3 billion dollar in vitro fertilization industry.

 

[00:07:30]

Speaker 1:

 

IVF clinics promised would-be parents a lot, and they deliver more than 65,000 babies a year, but IVF fails way more often than it succeeds. Do prospective parents even realize that?

 

Speaker 1: One of the first things Bernice and Jonathan tried to do was reach Melissa's doctor.

 

Jonathan Jones: Yeah, hi. My name is Jonathan Jones. I'm calling from Reveal. I'm trying to get in touch with Dr. Salem.

 

Bernice Yeung: We didn't reach him that time, but we kept trying. In the meantime, we learned about Dr. Salem in other ways.

 

[00:08:00]

Jonathan Jones:

 

I think is Room 112, which is the records office. Let's go in here.

 

Bernice Yeung: Jonathan and I went to the County Courthouse, in downtown Los Angeles.

 

Jonathan Jones: "Let's put in Salem first, Salem's name, and see what comes up in the computer, for cases." Okay.

 

Bernice Yeung: "Wow! It's quite a number of cases there."

 

Bernice Yeung:

[00:08:30]

We found that 10 patients had filed medical malpractice cases against Dr. Salem, or his clinic, the Pacific Reproductive Center. He won one, lost one, and settled three.

 

Jonathan Jones: We also looked at how his clinic stacked up against others. Every year, the Centers for Disease Control and Prevention collects and publishes success rates.

 

Jonathan Jones: We learned that Dr. Salem's numbers are really high. He plays this up, in advertising on his clinic website, and in this promotional video.

 

Dr. Salem:

[00:09:00]

I think we produce good result here. If you look at our statistics, compared to the rest of the clinic, I think our statistics stand tall.

 

Jonathan Jones: They stand way out. Dr. Salem has helped a lot of women have babies. His success rates are, in some cases, double the national average.

 

Narrator: But, he emphasizes one CDC calculation over others. Most fertility doctors do the same. It's based on when a clinic harvests an egg from a patient, fertilizes it, and then transfers a fresh embryo (usually three to five days later) and the woman ends up delivering a baby.

 

[00:09:30]

Narrator:

 

If you're a woman looking for a fertility clinic, Dr. Salem's statistics sound pretty good. But, are they the best way to choose where to go for treatment?

 

Jonathan Jones: It turns out, these success rates are pretty much the most complicated thing ever. We wanted to get a handle on them, so I talked to Dr. [Vitale Kershner 00:09:48], a fertility doctor based in New York.

 

Jonathan Jones: A few years back, Dr. Kershner and his colleagues looked into success rates. He says fertility clinics can game the system.

 

[00:10:00]

Dr. Kershner:

 

The problem is the methodology that's used to calculate those success rates, in that they allow certain things to be excluded from statistical consideration.

 

Jonathan Jones: Clinics can hide data, depending on the way they classify a procedure, or patient. Clinics can also inflate their numbers, by only treating the patients most likely to succeed at IVF.

 

Dr. Kershner:

[00:10:30]

We found that centers will often compete with each other, based on their success rates, so it's advantageous to a clinic to report higher success rates than another neighboring clinic.

 

Dr. Kershner: I think that, over many years, that has transcended, not just into selecting the types of patients that certain clinics take, but also into the type of treatments that the clinic chooses to provide.

 

Narrator:

[00:11:00]

You also have to look at how clinics market themselves. We found lots of pledges of individual attention, promises of dreams fulfilled, even football analogies, from a Florida doctor who pledged to 'coach parents into the end zone'.

 

Dr. Brown: Team Brown never gives up, baby, because we know if we keep trying, we will reach our goal.

 

Jonathan Jones: And we noticed some clinics advertise their success at getting women pregnant, not delivering healthy babies. I visited one.

 

Jonathan Jones:

[00:11:30]

The San Diego Fertility Center is right near the highway, just a couple of miles from the Pacific Ocean. It's sleek and modern, with a two-story glass atrium and airy conference rooms, that give it an upscale ambience.

 

Jonathan Jones: Marketing Director, [JoAnn Levitton 00:11:40], shows us around.

 

JoAnn L.: These are all our babies.

 

Jonathan Jones: The babies JoAnn's pointing to are photos, hundreds of them. Eight tall, framed collages, line this wall. One baby grins from a bathtub, wearing a wet, spiky hair-do. Another one sleeps in the lap of an enormous stuffed bear.

 

[00:12:00]

JoAnn L.:

 

Around the holidays, we get the Christmas cards, and a lot ... hundreds, from former patients, updates on their children, and they just love it. The doctor's go crazy over it.

 

Jonathan Jones: Like most IVF centers, this clinic offers patients the option to use donor eggs. Healthy eggs, usually produced by young women whose ovaries are in peak condition.

 

[00:12:30]

Jonathan Jones:

 

One of the clinic's brochures boasts a 70%-90% success rate, with donor eggs, but they're advertising pregnancies, not births. The brochure does not say that some of those pregnancies will end in miscarriages.

 

Lisa Vandella: So, there's a journey, to get to a baby, as you know.

 

Jonathan Jones: Lisa [Vandella 00:12:46] is this clinic's CEO.

 

Lisa Vandella: A lot of spontaneous miscarriages happen in this later phase, because there's a genetic abnormality, with the embryo.

 

[00:13:00]

Jonathan Jones:

 

She's the clinic's chief number cruncher. She fully understands that success rates can confuse potential customers.

 

Lisa Vandella: ... because how did you gather your success rates? Did you count everybody that started on medication? Did you count everybody that had an egg retrieval?

 

Lisa Vandella: Did you get to try the treatment? Or, did I tell you you couldn't try the treatment, because I didn't want you in my success rates.

 

Lisa Vandella: There's a lot of different ways to make success rates look good or bad.

 

Speaker 2:

[00:13:30]

This is far from what Congress intended, when lawmakers weighed in, 25 years ago. It was 1992, 14 years after the first test tube baby was born, in England.

 

Speaker 3: The profession, at that time, was pretty much the Wild West, as far as standards, or data, or disclosure, there was just no there, there.

 

Speaker 2: Oregon Senator Ron Wyden was in the House of Representatives, at that time. He sponsored a bill, requiring fertility clinics to tell the CDC how many times they did IVF, and how many patients had babies, after the treatment.

 

[00:14:00]

Ron Wyden:

 

When people tell me that it gives them the ability to shop and get a better deal for themselves ... You can have people spending $30,000, $40,000, $50,000, sometimes more, for these services. Before this law, people really had nowhere to turn.

 

Jonathan Jones:

 

[00:14:30]

But, we found the opposite of what Wyden claims. Success rates can provide a veneer of legitimacy to troubled clinics, and leave room for clinic operators to promise too much.

 

Jonathan Jones: Bernice met a woman who spent 11 years, and more than $50,000, on fertility treatments that didn't work.

 

Bernice Yeung: Her name is Pamela Mahoney Tsigdonis. She's a tall, thoughtful woman, who lives in Silicon Valley. She comes across as compassionate and driven.

 

Bernice Yeung: She and her husband stopped fertility treatments when she was 40. At that point, she was physically, financially, and emotionally drained.

 

[00:15:00]

Pamela T.:

 

You really don't think of yourself as 'full', as a full woman. You sort of feel a bit like an alien. You feel very isolated.

 

Bernice Yeung: Pamela, now in her 50s, felt the fertility industry had lead her on, and lead her astray.

 

Pamela T.: We're sort of socialized, with this understanding that, "If you want children, you can have them."

 

[00:15:30]

Bernice Yeung:

 

The World Health Organization defines infertility as the "inability to conceive, after one year of trying the good old-fashioned way." WHO calls that a disease.

 

Bernice Yeung: Fertility clinics promote their services as a cure. Pamela has become a writer and activist, who believes clinic operators should tell patients a lot more than they do now.

 

Pamela T.: What's not published, are failure rates.

 

Bernice Yeung: Nationwide, the failure rates are huge. Two out of every three IVF cycles don't result in a live birth. Two out of three!

 

[00:16:00]

Speaker 5:

 

Failure rates are important, because people need to come into the experience understanding there is a very high probability that the people involved will not end up with the baby they came to create.

 

Bernice Yeung:

 

[00:16:30]

The CDC and the fertility industry group, known as SART, are moving toward publishing more nuanced information, so patients may have a better idea if IVF can help them have a baby, given their specific circumstances. But, published failure rates, not likely says Dmitry Kissin, head of the CDC's fertility section.

 

Dmitry Kissin: The failure rates can be calculated, but for consumers, I think when they start a new treatment, I think they want to focus on the goal, on the success of the treatment. So, my personal opinion is that success rates will be more helpful.

 

Bernice Yeung: Others believe success rates don't help consumers, at all.

 

[00:17:00]

Jim Hawkins:

 

They present the success rate in a way that, unless you're incredibly sophisticated, you can't really understand what it means.

 

Speaker 4: Jim Hawkins teaches Consumer Law at the University of Houston, and has studied the fertility industry. He says, "People should think about fertility doctors, like they do used car dealers."

 

Jim Hawkins: When they kick the tires and say, "This is not a very good car," you kind of assume they're just talking you down, so that you'll expect less. And, when they give you the huge number up front, you assume that they're trying to get as much money as they can.

 

[00:17:30]

Speaker 4:

 

But, with a doctor, you don't assume that they're trying to make money. It's a different consumer area, because people aren't suspicious at all.

 

Jonathan Jones: ... Even though fertility treatments are a big financial commitment. It costs $15,000 or more for one round of IVF.

 

Speaker 4:

 

[00:18:00]

In the U.S., only 15 states require health care plans to pay for infertility care, and that coverage is often very limited. Some clinics offer 'package deals', in which patients pay for two or more IVF cycles, in advance.

 

Bernice Yeung: Jim takes issue with the way clinics promote these deals. He's even spotted a billboard, right outside his apartment, that put a picture of a healthy, smiling baby right next to the words, "Fall In Love With Our IVF Specials."

 

Jim Hawkins: It makes me wish that they would focus their advertising on other things, instead of playing on people's emotions.

 

Bernice Yeung:

[00:18:30]

But, emotions run deep in this business. For many patients, success rates offer a tangible sign of hope, and clinics like Dr. Salem's latch onto that hope, in their advertising.

 

Speaker 6: This is the music for a video, showing happy, healthy children, many cuddled in Dr. Salem's arms.

 

Speaker 6: Hope. Choice.

 

  Section 1 of 3          [00:00:00 - 00:19:04]
  Section 2 of 3          [00:19:00 - 00:38:04]
(NOTE: speaker names may be different in each section)

 

[00:19:00]

Speaker 7:

 

Hope, choice, happiness, and payment plans to make them happen.

 

Al Letson:

 

[00:19:30]

We've seen how the fertility industry plays on those emotions, selling hope at a high price, using rates of success that aren't the best way for patients to decide how and where to get treatment. Bernice and Jonathan found out something else about the way clinics promote themselves. Doctors can boost their success rates by transferring more than one embryo at a time.

 

Michael: Will I do two embryos? Yes. Did I transfer two embryos this morning? Yes.

 

Al Letson: That could mean twins, triplets, or more, which puts moms and babies at risk.

 

Michael: Do those patients know they're at risk of having twins? Yes. Do many of them want twins despite that risk? Yes.

 

Al Letson: We'll tell you why when we come back. You're listening to Reveal.

 

[00:20:00]

Al Letson:

 

 

[00:20:30]

 

Hey, hey, hey, this is Al Letson and I know you've been listening to the Reveal for the last few weeks because you, my friend, have excellent taste. You already know that we're doing our annual audience survey. Why are we doing that? Well, we wanna learn more about you. We wanna know what you like about the show, what you don't like, how much of a raise you think the hosts should get. I'll give you a clue, it's huge. You know, things like that. Just text "survey" to 63735, 63735. Standard texting rates apply. We'll even throw in something a little extra. If you take the survey, you get a very special gif. That's G-I-F. Anybody who calls it a "jif" is just wrong. It's a gif. That gif will be of yours truly. Again, just text the word "survey" to 63735. Thank you.

 

[00:21:00]

Al Letson:

 

 

[00:21:30]

 

From the Center for Investigative Reporting and PRX, this is Reveal. I'm Al Letson. Today we're revisiting the story about in vitro fertilization. Even though IVF has been around for about 40 years, it's still confusing territory for the growing number of people who consider it and even for some who have already done it. At the start of this hour we introduced you to Melissa Pineda. She tried to have a child through IVF with the help of Dr. Rifaat Salem. Months later, she couldn't shake the experience from her mind.

 

Melissa: I didn't know the truth yet. It was still all in my mind and I couldn't figure out at that time whether I was going crazy. I just didn't know what was the truth or not.

 

Al Letson: Reveal's Bernice Yeung and reporter Jonathan Jones kept trying to talk with Dr. Salem.

 

[00:22:00]

Jonathan:

 

Hi, Rosie. It's Jonathan Jones calling from Reveal. Is Dr. Salem in?

 

Al Letson:

 

 

 

[00:22:30]

One thing they wanted to ask, why had Dr. Salem put three embryos into Melissa? Transferring more than one at a time is a common practice, even though, as Bernice and Jonathan discovered, that can lead to all kinds of health risks for moms and kids. Fertility doctors know this, yet most continue to do it. While waiting for Dr. Salem to get back to them, Bernice and Jonathan visited two other Southern California fertility clinics to learn why doctors risk transferring more than one embryo in a woman at a time.

 

Bernice: I went to Reproductive Partners Fertility Center, San Diego. Lisa Yeo manages the lab here.

 

Lisa: Okay, this is our embryology lab.

 

Bernice: She opens a heavy door and leads me inside.

 

Lisa: This is where the miracle, we call it that, happens.

 

[00:23:00]

Bernice:

 

To prevent contamination of the embryos, I've put on a face mask, a hat, a blue paper gown, and booties over my street clothes and shoes. Inside the sterile zone, machines from refrigerator to shoebox size whirr and beep.

 

Bernice: Can you tell us? There's this interesting machine back here that's making all this interesting sound. What is it?

 

Lisa: Oh, it's a machine that tests the hormones. We do run pregest-

 

Bernice:

[00:23:30]

Lisa has been an embryologist for almost 30 years. She's seen major advances in reproductive technology. For example, she can now pick the most viable sperm and inject one directly into a tiny egg. The technology for freezing embryos so that patients can use them in the future is faster and more reliable than what they used in the past.

 

Gabriel: My name is Gabriel Garzo.

 

Bernice:

 

[00:24:00]

Dr. Garzo is the medical director here. He says those technological improvements mean doctors can reduce how often they transfer multiple embryos at once. That solves what he sees as an IVF-related problem: too many twins.

 

Gabriel: There is a really ignorance or unawareness about the complications of twin pregnancies.

 

Bernice: The notions of twins seems pretty innocuous, but Dr. Garzo knows the real risks they pose. While the vast majority of twins will turn out fine, they are more likely than single babies to have birth defects or to die before delivery. Often, twins are not fully developed when they're born.

 

[00:24:30]

Gabriel:

 

Since most twin pregnancies are born at about a month prior to the usual length of pregnancy, which is 40 weeks, there are significant developmental problems because the brain develops tremendously during the last month of gestation.

 

Bernice: It's not just babies who are at risk. Women carrying twins run a greater risk for gestational diabetes and preeclampsia, which is dangerously high blood pressure.

 

[00:25:00]

Bernice:

 

 

 

[00:25:30]

 

Triplets and quadruplets used to be rare. Their numbers started to take off after the fertility business did. In response to a publicity frenzy over cases like Octomom, who delivered eight babies at once, fertility doctors changed their practices. Since then, the number of triplets or more born in the United States has dropped. But twins, that's a different story. Twin rates have risen by about 75% in the US since IVF began. One out of every 30 babies born is now a twin, again in part because of IVF.

 

Bernice: Dr. Garzo is among the fertility doctors in this country who are committed to using just one embryo at a time for women under 35, unless they're a valid medical reason not to. Industry groups and the government recommend this practice. It's safest with the best long-term results.

 

[00:26:00]

Gabriel:

 

We can offer to our patients not only a baby, but also a healthy baby, which is really what everybody wants.

 

Bernice:

 

 

 

[00:26:30]

We decided to figure out how many doctors are like Dr. Garzo. That's why we analyzed data from the Centers for Disease Control and Prevention from the nearly 500 IVF clinics in the United States. We found that most are not like him. More than 3/4 of the clinics still routinely transfer more than one embryo at a time in women under 35, including the San Diego Fertility Center, the clinic Jonathan visited earlier. That's the one with all the baby photo collages. He met its medical director, Dr. Michael Kettle.

 

Michael: I'll just try to give you my 30-second overview.

 

Jonathan: Who you are, what you're doing.

 

Michael: Yeah, exactly. We were-

 

Jonathan: When we meet, he's wearing maroon scrubs with the clinic's name embroidered in white. We sit around a small table near a large window in his office. Diplomas and certificates fill the wall above us.

 

[00:27:00]

Michael:

 

UC San Diego where I did my fellowship. There's Alpha Omega Alpha that says I was smart in medical school.

 

Jonathan: CDC data from 2014 shows that Dr. Kettle's clinic was responsible for producing more multiples, mostly twins, than almost any other clinic in California. He knows twins carry risks and sometimes need long-term expensive care.

 

[00:27:30]

Michael:

 

If you ask the insurance company, they'll say twins is a disaster because, no doubt about it, a twin pregnancy costs them more money. There's a higher incidence of anything you might wanna say.

 

Jonathan: The doctor tells me he won't do three embryos, but he says most of his patients want two embryos inserted.

 

Michael:

 

 

[00:28:00]

Will I do two embryos? Yes. Did I transfer two embryos this morning? Yes. It's something that we feel like we want to give the patient a major role in that decision-making process. Do those patients know they're at risk of having twins? Yes. Do many of them want twins despite that risk? Yes.

 

Jonathan: I guess one of the things you said was that you would counsel them. I'm wondering what you would say to them in terms of counseling them about the risks.

 

Michael:

 

 

[00:28:30]

Yeah, I have a sheet if you wanna see it that talks about the risks of twins. This is one I got from a huge practice in New Zealand. I just got this so I wanna put this onto our letterhead and our stuff, but it's interesting reading. Risks to the mother, hospitalization for ovarian hyperstimulation two times higher. The risk of serious brain hemorrhage around birth to the baby is five times higher with twins. Respiratory distress is six times higher with twins. Cerebral palsy is five times higher with twins. That said, the other interesting statistic is that most twins do fine. Yeah, it's five times higher, but it's not 100% of the time.

 

[00:29:00]

Jonathan:

 

 

 

 

[00:29:30]

 

And he goes with that. Not all the time, a risk Dr. Kettle considers worth taking. But how does it work out for his patients? It's hard to tell because the industry just started releasing data that would help figure that out. Only two years' worth are available. In 2014, 8% of the babies born to women under 35 who did IVF at his clinic arrived very premature. That's about twice the national average. Very premature means born more than a month early. The clinic's numbers improved significantly in 2015. Dr. Kettle tells me he rarely knows what happens to preemies, twins, or any children born to parents treated at his clinic.

 

Michael: We're aware of things that happen up to the birth of the babies, but then followup after that is nigh unto impossible.

 

[00:30:00]

Jonathan:

 

When things don't go well, it can mean a lifetime of challenges. Bernice has one woman's story.

 

Bernice: Janet Farrell Leontu is a communications professor who lives just outside New York City. She did IVF four times.

 

Janet: The first doctor actually said, "You do IVF, hopefully you get two fertilized eggs, hopefully it's a boy and a girl. Instant family." I bought into that mentality.

 

[00:30:30]

Bernice:

 

She says no doctor mentioned any risks around carrying multiples, or made time to discuss them.

 

Janet: In each instance I was asked, "How many fertilized eggs do you want to transfer?" Well, I'm on the table, ready for the procedure. "Okay, we have these many eggs. How many would you like to put in?" I didn't know any better because that was the way it was done each time.

 

Bernice: On her last try at IVF, she gave birth to twin boys.

 

Janet: This is Andreas and this is Zachary.

 

[00:31:00]

Bernice:

 

Janet keeps a black and white photo of the boys as toddlers beside her desk. In it, both of her sons are grinning.

 

Janet: Yeah, how old are they? They look about two and a half to me, or three maybe.

 

Bernice:

 

 

[00:31:30]

Her sons are 14 years old now and the risks we've heard about twins have become real. Zachary is active in band, sports, and school. His twin, Andreas, can't speak, feed himself, or move on his own. He's been diagnosed with cerebral palsy. Janet firmly believes the number of multiple pregnancies would drop if fertility doctors routinely spelled out the risks.

 

Janet: They're complicit in creating children who have disability, a population of kids, several generations of kids, with disability.

 

Bernice:

 

[00:32:00]

Andreas is an upbeat, skinny kid who loves to ride in his dad's convertible. Janet already imagines his life as an adult. Painful as it is for her to say, this is what she hopes she'll live to do.

 

Janet: Bury him. Absolutely. I don't want him to be in the world without me, without us. Yeah.

 

Bernice: Now, let's be clear here. The vast majority of twin babies turn out just fine. While the risk of cerebral palsy runs higher in twins, doctors can never be sure what causes it.

 

[00:32:30]

Jonathan:

 

That still leaves us with one question. Why are some doctors so driven to transfer more than one embryo at a time?

 

Bernice: It goes back to those success rates we've been talking about. The way the CDC tallies the success rates doctors advertise the most counts only what happens the first time a doctor inserts embryos into a woman, right after her eggs are collected. Just that first try.

 

Jonathan:

[00:33:00]

Using multiple embryos does boost the chance of a pregnancy, but as we've heard, the risk isn't necessarily worth it because if a woman freezes her good-quality embryos and inserts them individually, her chance of getting pregnant over time is just about the same.

 

Bernice: In other words, the way success rates are calculated gives doctors an incentive to transfer multiple embryos more often than patients need. That exposes patients to unnecessary risk.

 

[00:33:30]

Al Letson:

 

 

 

 

 

[00:34:00]

 

To patients who wanna take that risk, twins may seem easier and cheaper than repeating IVF. But Bernice and Jonathan discovered that patients often don't get enough information or opportunity to really consider their options. That's not the case everywhere. Many European countries and Australia have policies that encourage doctors to transfer just one embryo at a time. The twin rate in those places is much lower than here in the US. The CDC plans to change the way it publishes data by 2019. It's an effort to increase the number of single-embryo transfers done here.

 

Al Letson: Next up, Bernice and Jonathan meet Dr. Salem.

 

Jonathan: You would agree it's rare to get the written consent after the procedure rather than before?

 

Rifaat: Well, to be honest with you, I don't know.

 

Al Letson: And they finally get to the bottom of Melissa Pineda's story. You're listening to Reveal.

 

[00:34:30]

Al Letson:

 

 

[00:35:00]

 

From the Center for Investigative Reporting and PRX, this is Reveal. I'm Al Letson. We've been investigating this hour the business of making babies in a lab. More and more people in the US and around the world rely on fertility doctors for help having children. For many would-be parents, this industry has worked miracles. It's also a business that offers few protections to consumers even as they fork over thousands of dollars with no guarantee for success.

 

Al Letson:

 

 

[00:35:30]

Earlier, Melissa Pineda told us how things went wrong at the Pacific Reproductive Center run by Dr. Rifaat Salem. He'd called her into his clinic on a Sunday, two days after transferring embryos into her womb. She thought he was going to examine her, but what she experienced was a scraping feeling inside. After he finished and left the room, a nurse stayed standing next to Melissa's bed.

 

Melissa: I started crying and I looked at her and I said, "Did he just give me an abortion?" She said, "You're so strong. You're so strong." Then she unstrapped me from the table and I was on the gurney and I was crying. Everything changed because I knew ... something bad happened.

 

[00:36:00]

Al Letson:

 

That something bad turned out to be a D & C. It's a surgical procedure doctors use to remove tissues from inside a uterus. Melissa didn't know why Dr. Salem had performed the procedure. She and her husband, David, say they didn't find out the truth until they sued Dr. Salem. Reporter Jonathan Jones and Reveal's Bernice Yeung spent months tracking down the full story and finally arrived at Dr. Salem's clinic where it all started.

 

[00:36:30]

Jonathan:

 

It took nearly eight months of email and phone requests before we got Dr. Rifaat Salem to sit down and talk with us. His business includes four fertility clinics and a group of surgical centers in the Los Angeles area. At his main clinic in Torrance, we pull open the glass entry doors and take the elevator to reception on the second floor. A flat screen TV plays in the tiny waiting room. A handful of patients talk quietly. It feels pretty calm for a place where big life decisions happen.

 

Jonathan: Dr. Salem, how are you?

 

Rifaat: Hello.

 

Bernice: Hi.

 

[00:37:00]

Rifaat:

 

How are you doing?

 

Bernice: Dr. Salem welcomes us into his small office back near the exam rooms. He's in sky blue scrubs and white doctor's coat. We asked him to ballpark how many babies he's helped create over the decades he's been doing this.

 

Rifaat: In the tens of thousands. How can I tell? You think I know?

 

Jonathan: I don't know.

 

Rifaat: In the tens of thousands. A lot. A lot. A lot. A lot.

 

Bernice: He's been in the IVF business since the early days.

 

[00:37:30]

Rifaat:

 

We would do a baby reunion every year. I remember in 1997, how long that ago? 20 years ago?

 

Jonathan: Mm-hmm (affirmative).

 

Rifaat: I had 1000 baby attending my baby reunion.

 

Bernice: 2015 figures show Dr. Salem's Pacific Reproductive Center was one of the top clinics in the country for births through IVF. We asked how he achieves these sky high success rates. He clicked a ballpoint pen and grabbed a piece of paper.

 

Rifaat: This is part of the preparation, why we do better.

 

Bernice: He started to draw an anatomy lesson.

 

[00:38:00]

Rifaat:

 

This is the uterus. This is cervix. This vagina, this is, too. This-

 

  Section 2 of 3          [00:19:00 - 00:38:04]
  Section 3 of 3          [00:38:00 - 00:54:38]
(NOTE: speaker names may be different in each section)

 

Dr. Salem: This is vagina, this is ovaries here, all right?

 

Jonathan Jones: Dr. Salem hangs his success on several factors. First an extra close examination of the uterus to find any folds and fibroids that might make it hard for a pregnancy to take. Second, removal of the eggs from a woman's ovaries only at their ripest time. Third, staffing the clinic with skilled embryologists, and there's more.

 

Dr. Salem: We have one that's, come with me-

 

Jonathan Jones: Okay.

 

[00:38:30]

Dr. Salem:

 

We're going to go to the roof and show how we build our IVF lab.

 

Jonathan Jones: Sounds good.

 

Dr. Salem: This was designed by somebody-

 

Jonathan Jones: He takes us up the back staircase to the roof where he shows off the air ducts that connect to his lab.

 

Dr. Salem: Sophisticated system we built for the IVF lab.

 

Jonathan Jones: What is this do?

 

Dr. Salem: It filters. HIPA filter and filter to make sure the environment there is clean.

 

Jonathan Jones: Okay.

 

Dr. Salem: Okay?

 

Bernice Yeung:

[00:39:00]

It's hard to know how any of this effects his numbers. As we've heard this hour, clinics can hide a lot of important information behind impressive IVF success rates. Doctors can take unnecessary risks to boost them, still Dr. Salem consistently promotes the figure as the best way for fertility patients to find a good clinic.

 

Dr. Salem: What is the final answer? The final answer, you know what I mean? It is if you have a good success rate means everything work. Everything work.

 

Bernice Yeung:

[00:39:30]

We found you can't judge a clinic entirely on its success rates. Potential patients should look at other indicators of quality care. How closely doctors stick to transferring one embryo at a time, and how many healthy, full-term babies a clinic produces overall. Many patients told us the most useful thing they did was consult with several doctors before choosing a clinic. Lisa Wilson did just that. Early on, she met with Dr. Salem. She investigates consumer fraud for a living, so she tuned in to the specific words he used as they discussed her circumstances.

 

[00:40:00]

Lisa Wilson:

 

Dr. Salem used old and older, it's keywords, and if you, I'm an investigator, I know how to manipulate conversations. Not that I'm trying to feed them anything, but I'm going to get them to react, and that's kind of how Dr. Salem dealt with everything, is that he gave you aggressive words that you would react to and would chip away at you. You know, in your vulnerable state.

 

Bernice Yeung:

[00:40:30]

List knew the desire to have a baby can lead people to liquidate their retirement savings, or mortgage their homes to pay for fertility treatments. Still, she and her partner were surprised at how quickly the conversation turned to money.

 

Lisa Wilson:

 

 

 

[00:41:00]

After we met with Dr. Salem, we met with a nurse, and she talked about different possible financial structures of paying for the what ifs. They were so interested in making sure they had a step foot forward, and getting things signed so that you would have to be in financing of something, and be obligated in some way for payment to them. They wanted money is basically what I felt.

 

Jonathan Jones:

 

 

 

[00:41:30]

Dr. Salem says he gives patients options, so they can make their own decisions. Like many in the industry, he offers package deals. Pay in advance for two or three for one IVF cycles. If the patient gets pregnant right away, some clinics keep the extra money. If the patient goes through several rounds of IVF, the clinic won't make as much. Some programs offer a money-back guarantee if no pregnancy happens. Sharon McKenzie, the financial coordinator at Dr. Salem's specific reproductive center says the set up helps patients and doctors share financial risk.

 

Sharon McKenzie: It's not often they get it in the first cycle, it's usually two or three, and if they hit the second cycle they've already gotten a discount. If they hit the third cycle, it's a big discount.

 

Jonathan Jones:

[00:42:00]

Because it's so hard for patients to evaluate their prospects of success, it's hard to figure out if this offer is a good match for their own circumstances. The Fertility Industry Association warns about the potential for coercion. Clinics choose who can participate, often these deals do not include everything a patient needs for IVF. Some count success as a pregnancy, not a child.

 

Bernice Yeung:

 

 

[00:42:30]

It's also really difficult for consumers to get details of lawsuits against doctors. We analyzed federal data, and learned that Dr. Salem is among just 1% of physicians nationwide who have made at least four payouts to patients after lawsuits. Even harder to confirm, confidential settlements between doctors and patients. Or when a doctors previous clients have had experiences like Melissa Pineta.

 

Dr. Salem: We do very sophisticated surgery here. We take the eggs, eggs go to the lab right there.

 

Jonathan Jones:

 

[00:43:00]

Dr. Salem shows us his labs and patients rooms nearby. When Melissa arrived here that Sunday morning, for what she thought would be an exam, she lay on a bed in one of these rooms. We've heard what she experienced there, but remember, at that time Melissa says she didn't know exactly what Dr. Salem had done, or why. We asked the doctor to explain. He says he called Melissa in that day to fix a mistake.

 

Dr. Salem: The mistake was made innocently by my embryologist. She pulled the wrong dish.

 

Jonathan Jones: Pulled the wrong Petrie dish. Someone else's Petrie dish.

 

Dr. Salem: Which was genetically abnormal embryo ready to be discarded. She load the three and I transferred the embryo.

 

[00:43:30]

Jonathan Jones:

 

Dr. Salem says the lab was supposed to get rid of the other couples embryos.

 

Bernice Yeung: Melissa knew Dr. Salem had transferred three embryos into her, but she says she didn't know they belonged to someone else. She'd expected an exam, when she felt him scraping inside her, she feared that he was trying to clear her womb. Melissa says she most certainly had not given him permission to do that. Dr. Salem insists that's not true.

 

[00:44:00]

Dr. Salem:

 

Lie. L-I, whatever, it's a lie and I'm very upset, but I'm not angry for her.

 

Bernice Yeung: During our interview, he calls in staff to back him up.

 

Dr. Salem: Let me see if I can see my nurse who did that here. Hopefully still here, probably she left already. Is Kate still there? Kate and Rose, can you please? Thank you.

 

Bernice Yeung: Kate Ferris is the nurse who was with Melissa when Dr. Salem removed the embryos.

 

Dr. Salem: Kate come here. Kate.

 

Kate Ferris: Hi.

 

[00:44:30]

Dr. Salem:

 

Kate is in charge of the operating room here. This is woman where everybody loves her.

 

Kate Ferris: Hi.

 

Dr. Salem: You know what I mean? The most straight person you'll ever get in your life. From Kate. We're talking about that Pineta case here.

 

Kate Ferris: Oh.

 

Dr. Salem: Right? We talk about the consent. Tell me what happened.

 

Kate Ferris: What happened with the consent?

 

Dr. Salem: Yeah.

 

Kate Ferris: What do you mean? When she signed it with the procedure or-

 

Dr. Salem: Yeah.

 

Kate Ferris: What did you want to talk about though?

 

Jonathan Jones:

[00:45:00]

Melissa signed a consent form for the abortion procedure, listed as a D&C after it was done. That violates basic standards of medical care.

 

Dr. Salem: It looks like she signed it afterward.

 

Kate Ferris: Right, she did.

 

Dr. Salem: She walked in, she knows what it is.

 

Kate Ferris: Yeah, there was definitely-

 

Dr. Salem: Tell him.

 

Kate Ferris: Oh okay, there was definitely verbal consent. Dr. Salem talked to the patient, I talked to the patient. Everyone talked to her.

 

Jonathan Jones: Did she know that there had been a wrong embryo in place though?

 

Kate Ferris:

 

 

[00:45:30]

Well definitely she told, I remember that very well, when I got there she said, I said "What are we doing?" At that point I was still waiting to find out what had happened, and then when I saw her she said "They put the wrong embryos," or something like that. "I got the wrong embryos, and we need to take care of it now." So she definitely, I know for sure she understood that.

 

Dr. Salem: Thank you Kate.

 

Jonathan Jones: Kate leaves, and we turn back to Dr. Salem. You would agree it's rare to get the written consent after the procedure, rather than before?

 

Dr. Salem:

 

[00:46:00]

Well to be honest with you, I don't know. Yes, the right thing to do it before, but again, you know, just, what, yesterday? I did a procedure, and then we had to go and look, do a laparoscopy. She did not sign a consent for the laparoscopy, in a time of emergency you don't need a consent. So we do it, you know what I mean? We deal with normal people, and they know exactly our intention, you know what I mean? Oral consent or oral contract, and she still sign it. At the end of the day she did not object. She knows exactly what she's doing.

 

Jonathan Jones:

[00:46:30]

Dr. Salem didn't follow standard medical practice with Melissa in a couple of other ways. Experts hired by his own lawyers testified that he failed to properly document the medical advice he had given to the Pineta's. They said he should have given them more time to think about their options, including the option to do nothing.

 

Bernice Yeung: Dr. Salem regards people who sued him over the way he runs his clinic as jealous rivals, or ...

 

Dr. Salem: Angry patient. I mean patient that becomes so emotionally here, and they do not get pregnant, they point the finger to anybody.

 

Bernice Yeung: He thinks that instead of suing him, Melissa should have let him try another round of IVF.

 

[00:47:00]

Dr. Salem:

 

[inaudible 00:46:59] Walked away with another baby with us, if she didn't think that she get some money, what works for her, come back she could have got her baby with us again.

 

Bernice Yeung: The Pineta's are dumbfounded by everything he told us. We asked them if they had understood in advance what procedure he planned to do. David says Dr. Salem spelled out nothing.

 

David Pineta: He tried to sweet talk us and-

 

Melissa Pineta: Promise us.

 

[00:47:30]

David Pineta:

 

Promise us, and fool us, so we had no clue what was about to take place. Had he said "Okay look, I'm about to give your wife an abortion," all the things that took place, if he had said just the first thing that I said I would have looked at him and said "You're crazy. We're going home. I don't know what's going on. We'll figure it out. We'll get a lawyer, whatever. We'll work this out, but we're not going to just let you do what you want right now because you guys made a mistake."

 

Bernice Yeung:

[00:48:00]

The Pineta's say that they did not realize that the doctor had inserted someone else's embryos until months later when their lawyer deposed Dr. Salem under oath. That knowledge upset Melissa even more.

 

Melissa Pineta: My heart was so broken and I just cried constantly about those babies. Whose babies were they? I would have given birth to someone else's babies. I would have loved to have done that for someone, I just, I was so overwhelmed.

 

Bernice Yeung: David still feels vulnerable and angry.

 

[00:48:30]

David Pineta:

 

If we ever allowed it again, which we wouldn't, I would say "I want to see the process." I want to see what it is you're doing so I know that you're doing what you're supposed to be because in reality we have no idea.

 

Bernice Yeung:

 

 

[00:49:00]

David and Melissa settled their lawsuit against Dr. Salem the day it was supposed to go to trial. Even though Dr. Salem claims the Pineta's lied about what they knew, he paid them $250,000. By settling, he doesn't admit liability. The couple tried IVF again at a different clinic. Melissa got pregnant twice, and miscarried both times. Three years after her experience with Dr. Salem, longing still shadows even happy times for Melissa.

 

Melissa Pineta: Okay Piper, go run in there, I'll be in there in a minute, okay? I love you.

 

Bernice Yeung: She drops off her seven year old daughter Piper Joy at tumbling class. Then lingers in her parked car. She still wishes she could have another child.

 

[00:49:30]

Melissa Pineta:

 

Not because we need more on our plate, because I still have so much love, and I've been blessed with so much and there's so many people that don't have, I just, that's who I am. That's why I wanted more children, because I still have so much more love in my heart.

 

Al Letson:

 

[00:50:00]

During the decade's fertility science has developed, society's changed. There are more same sex couples with the full rights and privileges of marriage and parenthood, and more single women who choose to become mothers. Some workplaces, including the US military, now cover the cost for their personnel to harvest and freeze their eggs and sperm so they can focus on their careers first, and on having children later. All of this means the fertility business touches an ever-increasing number of peoples lives, and is expanding. Dr. Salem is going international.

 

Speaker 8:

[00:50:30]

Jamal and Layla have been married for ten years, and for the past three have been unsuccessfully trying to have children. After trying every home remedy option known to mankind, a friend introduced them to PRC Dubai. At PRC Dubai-

 

Al Letson: That's right, Dr. Salem's clinic has opened up shop in Dubai. In the United Arab Emirates. The website trumpets the arrival of a medical practice with 25 years of success in America.

 

Speaker 8: We create families every day, and our success is measured in birthdays.

 

[00:51:00]

Al Letson:

 

 

 

 

[00:51:30]

 

Thanks to Jonathan Jones and Bernice Yeung for bringing us their story on the IVF industry. Emily Harris was our lead producer on today's show. Our editor was Cheryl Duvall with help from Andy Donahue. Our Production Manager's Mwende Hinojosa. Our Sound Design Team this week is the Justice League. My man, 'J-Breezy', Mr. Jim Briggs, Clair 'C Note' Mullen, with help from Fernando 'My Man Yo' Arruda, and Katherine 'The Cat' Raymondo. Our CEO is Christa Scharfenberg. Our executive producer is Kevin Sullivan. Our theme music is by Camerado, Lightning. Support for Reveal is provided by the Reva and David Logan Foundation, the John D. and Catherine T. MacArthur Foundation, the Jonathan Logan Family Foundation, the Ford Foundation, the Heising-Simons Foundation and the Ethics and Excellence in Journalism Foundation. Reveal is a co-production of the Center for Investigative Reporting and PRX. I'm Al Letson, and remember, there is always more to the story.

 

[00:52:00]

Speaker 9:

 

This special preview comes from Wondery and their new podcast Dr. Death.

 

[00:52:30]

Laura Beale:

 

Imagine, you're struggling with back pain for months. No one can tell you what's wrong, then you find a doctor.

 

Speaker 10: The words that he said that I wanted to hear was "I could fix you." You know, those are magic words. I was in pain, and somebody, a neurosurgeon, said I could fix you.

 

Laura Beale: You trust he'll take care of your problem.

 

Speaker 11: Nothing but good reports, and a list of accolades that were two pages long.

 

[00:53:00]

Speaker 12:

 

When you talk to him, he's engaging, he seems very intelligent. He's witty, he's charming.

 

Speaker 13: He had always talked about "I'm going to be a doctor."

 

Speaker 12: He has this dark side, that he likes to keep separate and hidden from everybody else.

 

Laura Beale: This is a story about 33 patients who put their trust in a prominent surgeon in Dallas.

 

Speaker 14: State your full name for the record.

 

C. Duntsch: Christopher Daniel Duntsch.

 

Laura Beale: And wished they hadn't.

 

[00:53:30]

Speaker 15:

 

This friend called me and said "I believe that your doctor is on the news, that he has been killing patients."

 

Laura Beale: It's a story about a system that failed to protect them at every possible turn.

 

Speaker 16: I'm trying to stop this guy from being, let operate anywhere, anytime, any place.

 

Speaker 14: Have you ever been under the influence of any drugs during the time that you were performing spinal surgery on any patient?

 

[00:54:00]

C. Duntsch:

 

I take the fifth.

 

Speaker 17: This was not an operation that was performed, this was attempted murder. (Music plays).

 

Laura Beale: From Wondery, the network behind Dirty John, I'm your host and reporter Laura Beale. Dr. Death, our new six-part series, premiers on September 4th. Subscribe today on Apple Podcast.

 

[00:54:30]

Speaker 18:

 

That's not how that story's supposed to end, you know.

 

Speaker 19: From PRX.

 

  Section 3 of 3          [00:38:00 - 00:54:38]