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Tuesday, March 19, 2024

Local Catholic offers burial for embryos who die in the IVF process

Bridget Ryder
Laura Elm of St. Peter in Mendota provides burial for deceased embryos from fertility clinics through a ministry she created called Sacred Heart Guardians and Shelter.
Laura Elm of St. Peter in Mendota provides burial for deceased embryos from fertility clinics through a ministry she created called Sacred Heart Guardians and Shelter. DAVE HRBACEK | THE CATHOLIC SPIRIT

In August and November, 30 embryos conceived through in vitro fertilization, but who died before they were able to be transferred to a uterus, were laid to rest in Resurrection Cemetery in Mendota Heights. The embryos came to the Catholic cemetery from two fertility clinics, and their burial was facilitated by Laura Elm, founder of Sacred Heart Guardians and Shelter. Another burial is scheduled for February.

Elm’s work may be the first-known effort to offer fertility clinics burial of embryos as an alternative to disposing of embryos as medical waste. Elm believes that providing a dignified burial for these tiny humans is the least she can do to acknowledge their humanity.

“When you talk about the ‘fringes,’” said Elm, a parishioner of St. Peter in Mendota, “these are people who are really on the outermost of society, living in dishes, and they have needs, too.”

The mission of SHG is “to provide corporal and spiritual care for the youngest and smallest members of our human family.” Elm, 41, knows that as the practice of IVF increases, more and more embryos will be exploited. Through Sacred Heart Guardians and Shelter, she hopes to draw attention to these often-forgotten persons, as well as serve them, even if it is after they have died.

Elm’s motivation in this endeavor stems from her own experience in the fertility industry.

In early 2016, the married mother of four took a job in the fertility division of a national health insurance company. In this role, she served on a committee tasked with qualifying fertility clinics as centers of excellence for the company’s provider network.

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“I took the job with the trusting belief that life begins at conception, but without understanding what conception was,” she said. “I had no idea what our faith teaches on IVF or why. I had a vague sense this wasn’t how God wanted babies to be made. I imagine there are a lot of people like me.” (See “What the Church teaches on IVF”)

While taking classes for marriage preparation and the Rite of Christian Initiation of Adults six years before, she had learned the Church’s teachings on contraception within marriage. But, as far as she remembers, the flip-side of infertility and morally acceptable treatments were never addressed. She had experience in other areas of health insurance and pharmaceutical sales, but this job was her first close look at fertility treatments.

The committee she worked on analyzed the clinics using the Atlanta-based Centers for Disease Control data on IVF outcomes. By law, all IVF cycles must be reported to the CDC, either directly or by way of professional organizations such as the Society for Assisted Reproductive Technology. The CDC then publishes annual reports on IVF success rates for consumer purposes.

IVF involves five steps: ovum stimulation, egg retrieval, egg fertilization, culture and monitoring, and transfer of selected embryos to the uterus. What initially caught Elm’s attention was that data on one of these five steps, fertilization, was not accounted for in the CDC’s data. The data seemed to skip from retrieval to transfer without visibility into the total number of embryos created.

WHAT THE CHURCH TEACHES ON IVFOne criteria the Church uses to evaluate the morality of fertility treatments is the respect it shows for the dignity of the human person. Scientists have known for decades that even in natural conceptions, approximately 50 percent of embryos do not survive past 10 days, unknowingly miscarried in the woman’s normal menstrual cycle. However, the situation in the fertility lab is different, where embryos are created knowing that many will never survive and some will be intentionally destroyed.

According to Paul Wojda, theology professor at the University of St. Thomas who specializes in medical ethics, it’s the single- minded focus of IVF, putting efficiency in achieving results over the value of each human life, that shows the moral problems involved. “‘Donum Vitae,’ Instruction on Respect for Human Life in its Origin and on the Dignity of Procreation Replies to Certain Questions of the Day,” a 1987 instruction from the Congregation for the Doctrine of the Faith, addressed this aspect of IVF:

“Such deliberate destruction of human beings or their utilization for different purposes to the detriment of their integrity and life is contrary to the doctrine on procured abortion already recalled. The connection between in vitro fertilization and the voluntary destruction of human embryos occurs too often. This is significant: Through these procedures, with apparently contrary purposes, life and death are subjected to the decision of man, who thus sets himself up as the giver of life and death by decree. This dynamic of violence and domination may remain unnoticed by those very individuals who, in wishing to utilize this procedure, become subject to it themselves. The facts recorded and the cold logic which links them must be taken into consideration for a moral judgment on IVF and ET [in vitro fertilization and embryo transfer]: the abortion-mentality which has made this procedure possible thus leads, whether one wants it or not, to man’s domination over the life and death of his fellow human beings and can lead to a system of radical eugenics.”

“Donum Vitae” also states:

  • ”These interventions are not to be rejected on the grounds that they are artificial. As such, they bear witness to the possibilities of the art of medicine. But they must be given a moral evaluation in reference to the dignity of the human person.”
  • “Although the manner in which human conception is achieved with IVF and ET cannot be approved, every child which comes into the world must in any case be accepted as a living gift of the divine Goodness and must be brought up with love.”
  • “Thus the fruit of human generation, from the first moment of its existence … demands the unconditional respect that is morally due to the human being in his bodily and spiritual totality.”
  • “The corpses of human embryos and foetuses, whether they have been deliberately aborted or not, must be respected just as the remains of other human beings.”

— Bridget Ryder

“[The CDC report] is very focused on the adult female patient,” Elm said of the statistics the CDC publishes. “But [it] doesn’t acknowledge the other patients [who] are created.”

In her work for the health insurance company, though, she kept hearing about all the embryos created through IVF. Initially, the number of frozen, abandoned embryos in the United States struck her. The ideal goal of each IVF cycle is the live birth of one healthy baby, but, for a variety of reasons, the result is often multiple embryos, and not all of these embryos are necessarily transferred immediately to a uterus. Instead, some may be transferred to cryopreservation tanks, where they can be maintained if their parents choose to implant them at later dates.

It’s estimated that in the United States alone there are anywhere between 600,000 and more than 1 million cryopreserved embryos. Approximately 5 percent are considered abandoned, meaning their parents have stopped paying storage fees, lost contact with the facility where they are maintained, and left them at the discretion of the fertility clinic.

Elm’s 45-minute commute to work gave her time to think, and she started to wonder, are these embryos really human, and if so, is anyone doing anything to help them?

The incomplete statistics on IVF also continued to trouble her.

“Something felt ‘off’ about not understanding how many eggs were being fertilized,” she said. “People are pretty intentional about the data they record.”

Defining ‘conception’

To answer her queries, she dove into works by geneticists including Jerome Lejeune, the scientist who discovered the chromosomal anomaly that causes Down syndrome and who is considered the father of modern genetics. Now she understood what it meant to say that life begins at conception. Once the sperm penetrates the egg, the shell of the egg hardens to prevent any other sperm from entering. At this point, the DNA of a unique person is contained in a single-cell membrane, and a new life begins to unfold. Embryologists call this one-celled human a “2-pronuclei” embryo. “Fertilized egg” and “embryo” are synonymous.

To answer Elm’s question about how many embryos were being conceived during IVF cycles, she found a study published in 2010 in the journal “Fertility and Sterility” on a large fertility practice that analyzed four years of IVF cycles from start to finish. This study included information on how many eggs were fertilized. Combining those statistics with the CDC statistics, she estimated that in fresh, non-donor cycles alone the total embryo mortality rate is 82 percent.

A fresh, non-donor cycle means the eggs come from the woman the embryos will be transferred into, and at least one embryo is transferred immediately. According to the CDC’s 2015 data, these account for 39 percent of IVF cycles, the largest percent of any cycle type. Other cycles include those done with donor eggs and cycles where all embryos are frozen for later transfer.

Looking at fresh CDC non-donor data with this context of embryo mortality, Elm found that 76 percent of embryos that were transferred to the mother’s womb die before birth — the vast majority dying shortly after transfer and before implantation. According to the CDC, nationally, of the 110,062 embryos transferred in 2015, 75 percent did not survive to birth. In total, only 28,708 pregnancies were achieved from the transfers of more than three times as many embryos. But Elm found that embryos that survive to transfer account for less than 25 percent of the embryos conceived in IVF.

Doing the math on the difference between eggs fertilized and embryos transferred in the fertility practice, she found that for every one embryo that was transferred, two die, either naturally or from intentional discard. Applying this ratio to the national statistics, she estimates that in the 91,090 fresh non-donor cycles begun in 2015, approximately 385,215 embryos were created by IVF. Of them, about 21 percent died in utero, and another 60 percent died in the lab. Another 11 percent were likely cryopreserved, with only 7 percent of embryos surviving to live birth.

Anecdotal evidence from online forums for parent patients of IVF supports the wider numbers. A thread on whattoexpect.com read: “They retrieved 26 eggs, all mature. 21 fertilized. But today I got the call that only 11 have made it to the 5-day blastocyst phase. We are having those 11 PGD’d [diagnosed before implantation] so I expect to lose a few more before all is said and done. .?.?. Is it normal to lose about 50% between Day 2 and Day 5?”

Elm explained: “In IVF, [embryos] are often treated as a statistical means to a desired end.”

It’s part of the numbers game IVF relies on for success, she said. The often inhuman treatment of embryos in the process is reflected in the common use of the term “fertilized egg” instead of “embryo,” she added. But, Elm pointed out, a “2 -pronuclei” embryo is not just “a very special cell,” but rather an organism with the intelligence to develop its life course — in this case, a human life.

Based on what she learned, Elm realized that she could not collaborate further with the IVF industry. In February of 2017, she left her product management position and founded Sacred Heart Guardians and Shelter in Eagan.

From research to action

“The first eight months of coming up with this was ‘What are we going to do, and who can I rope into this?’” she said.

For SHG’s board members, she not only gathered friends but also reached out to strangers. One of the strangers Elm brought on board was Paul Wojda, a theology professor at the University of St. Thomas in St. Paul who specializes in medical ethics.

“I’d never heard of anything like this before,” said Wojda, who remains a supporter of SHG but whose term on the board has since ended. He thinks that Elm brings a unique experience to the endeavor of recognizing the humanity of embryos.

Elm also found Amanda Harding through a Catholic News Service blog, Mama Needs Coffee. Through the blog, Harding, 34, had told her personal story of receiving a diagnosis of infertility, turning to IVF and then deeply regretting it. She lives in eastern Pennsylvania with her husband and three born children. The Hardings have two more embryos in cryopreservation that they plan to transfer. Harding joined the SHG board because she wants to bring awareness to the humanity of embryos.

“It was very near and dear to me,” she said. “I think that embryos are the forgotten ones.”

With the help of theologians and lawyers, Elm mulled over several ideas to assist embryos created in IVF. She wanted to take action in accord with Church teaching, but many possible interventions either had too many logistical or moral obstacles, or were focused solely on frozen embryos. Elm knew that embryos were living and dying at all stages of IVF. A bold yet simple idea emerged — provide burial for embryos while continuing to work for the recognition of their humanity.

State law already requires a dignified disposal of fetal remains, and several Twin Cities hospitals use the services of Resurrection Cemetery. As embryos have not yet formed the “cartilaginous structures, fetal or skeletal parts” defined by state law that require a dignified disposal, the common practice of IVF clinics is to dispose of them as medical waste. Elm has partnered with the cemetery so that embryo remains can be included in its quarterly fetal remains burials.

“The crucial issue is trying to convince clinics,” Wojda said.

Edward Furton, director of publications and an ethicist at the National Catholic Bioethics Center, thinks the emphasis on human dignity in Elm’s work may make many clinics reluctant to give her embryo remains.

While the language in the literature Elm sends to clinics is diplomatic, she makes it clear that she is not offering another way to dispose of embryos that can simply be added to the list of already available options such as discard or donation for research. Instead, she is offering an alternative to the practice of disposing of already deceased embryos as medical waste. She is asking clinics to allow SHG to care for embryos that die during the process of IVF.

“Please let us serve the smallest,” reads the postcard from the March 2018 round of outreach. “Embryo loss is a sorrowful reality of IVF, and until now clinics have not had an alternative to waste disposal for embryo remains. A better choice is available. Sacred Heart Guardians and Shelter facilitates burial for embryos (i.e. 2PN zygote and on) who pass away in the IVF laboratory.”

As a strategic move, SHG does not communicate its burial services to the general public. When one of her pamphlets made it into the hands of a parent-patient, the parent contacted Elm to ask for burial for her cryopreserved embryos.

“What she said was, ‘I think I’d like to do this.’ What I heard was, ‘Since you’re offering this service, I’m going to thaw my embryos so that they can die and then be buried,’” Elm recalled.

Elm points out that frozen embryos are very much alive, and thawing them without intent to transfer to a uterus will cause their death. To avoid the unintended consequence of parents deciding to thaw their frozen embryos so that they may be buried, Elm only approaches clinics directly about embryo burial.

Elm started her outreach with the five IVF clinics in Minnesota. She then expanded her quarterly outreach nationally. Thus far, two clinics have decided to provide burial for deceased embryos as facilitated by SHG. Elm preferred not to name them as it is a delicate subject for clinics, but she did say that one clinic has made embryo burial through SHG its new standard procedure for deceased embryos. The other clinic is making the service known to its parent-patients as an option in case their embryos pass away. After each burial, Elm sends the clinics a letter with information on the burial site, a copy of the program of the service and a prayer card. Clinics can make this information available to their parent-patients whose embryos have been buried.

Furton considers the work of SHG an act of charity. He notes that, unlike embryos that die in utero at the same gestational age — so early that a woman wouldn’t even know she was pregnant — embryos in fertility labs are watched, tracked and well known. And no one, not even an embryo, should knowingly be treated as medical waste.

“These remains are very important, and we hope for sanctification and life in Christ for these embryos,” he said.

Changing the conversation

Meanwhile, Elm is working on other fronts to have the embryos recognized as equal stakeholders in the IVF process. In April 2018, she published her research on embryo mortality in “Ethics & Medics,” the monthly publication of the NCBC. The paper reframed IVF outcomes in terms of embryo life and death, instead of adult patient procedures and resulting live births.

In the article, she calls on the CDC to include statistics on how many embryos are created and how many embryos are available for transfer. The CDC consumer report on IVF is taken from the National ART (assisted reproductive technology) Surveillance System.

According to Elm, this large digital database includes reportable data fields for “2-pronuclei” and “embryos available for transfer.” In her paper, Elm urged the CDC to publish this data in its IVF consumer reports along with the explanation that a “2-pronuclei” is synonymous with human embryo. Elm hopes that if this information were available, people would take embryo outcomes into consideration in their decision to pursue IVF.

Elm may be the first person to try to include this fact in the public discourse around IVF.

“No one else has done what she’s trying to do, to understand what the true embryo loss is,” Furton said. “My hope is that she will track this material over years and make it available. She’s producing stats that no one is producing, and it’s important to the debate about IVF.”

Wojda and Harding also see a need for more education on IVF and more support for infertile couples, even within the Church.

In Wojda’s experience, the Church’s position against IVF isn’t always known, even when it should seem obvious. He recalled how during debates about embryonic stem-cell research in the 1990s, he testified on the issue before the Minnesota Legislature, and afterward, was approached by a man who asked him, “If the Church is so dead set against stem-cell research, why isn’t it against IVF?”

Elm hopes to meet this need, too. Part of her program is offering educational presentations on the humanity of embryos. She has already presented to one parish pro-life group. She also encourages prayer — not only for embryos and all those involved in IVF, but also for all couples carrying the cross of infertility. The SHG website includes a form for submitting prayer requests, which are remembered in a weekly holy hour. In 2019, SHG also plans to write and publish a resource pamphlet on grief for IVF parent-patients who have suffered the loss of their embryos in the lab, either through an IVF cycle where the embryo is transferred but fails to implant or miscarriage after implantation.

Although fewer than 2 percent of births come from the procedure, the use of IVF has doubled in the past 10 years. Elm knows that it’s unlikely that the practice will end anytime soon. In the meantime, she plans to continue to advocate for embryos and offer burial as an alternative to disposing of embryos as medical waste.

It’s the least she can do, she said, to serve the smallest members of the human family.

 


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