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Episode 43 Transcript

Ep 43 | Body Autonomy For Surrogates and Egg Donors

Today, we’re going to talk a bit more about body autonomy as it relates to surrogates and egg donors. Some may think that as a surrogate you give up the right and ability to make decisions about your body.

Whoever thought making a baby could be so hard. Luckily, the fertility journey isn’t meant to be traveled alone. Eloise Drane has helped hundreds of people build and grow their families over the last 15 years and she’s ready to share insider knowledge and expertise with you. So grab a seat and let’s talk fertility and alternative family building in the fertility cafe.

Hello, and welcome to Fertility Cafe. I’m your host Eloise Drane. We’re talking about a hot topic, body autonomy. For those unfamiliar with the term, body autonomy is the concept that an individual has the right to control his or her body and what happens to it. It’s a concept that parents teach to children as a way to help them understand what kind of touch and contact is appropriate. It’s a topic that is currently in the news with the recent Texas abortion law and the Supreme Court’s five to four ruling upholding it. And it’s a concept that is pivotal to the surrogacy and egg donation community in terms of maintaining ethical practice within the industry.

Once an individual reaches the legal age of consent in most states at age 18, there are no laws restricting what a person can do to their own body. Even when those choices may not be the safest, such as using drugs or alcohol. It’s each individual’s right to decide what happens to their body. There are of course, laws to prevent harm to others, for example, laws against drunk driving exist because your personal choice may injure or kill someone else. But the act of drinking to access is not illegal once you are of age. It’s important to start this discussion from the understanding that someone who chooses to embark on a surrogacy journey is typically not going to do anything that would be harmful to the pregnancy. They’re going to treat the pregnancy as if they were carrying their own child. Women who choose to be surrogates are as a general rule loving, kind, family-oriented, and they essentially love being pregnant. They have had successful pregnancies before, they’ve raised or are raising their own children, and they have raised their hands to say sign me up for more. So I can help someone in need become a parent.

Surrogate applicants working with agencies will have been screened in all behaviors and expectations would have been gone over several times. Nothing would be left undiscussed. By the time the parties were developing and agreeing to the illegal contract, they would be on the same page and the contract would detail the agreed plan for nearly all possible circumstances. This is not typically someone you have to worry about engaging in harmful or extreme behaviors, and if she is, it’s highly unlikely she will make it past initial screenings. For anyone considering or becoming a surrogate, it’s important to understand that this is a give and take relationship. The way you choose to carry your own child might look a bit different than how the intended parents would choose. Try to remain empathetic in your understanding of the expectations and worries your intended parents might have.

Think back to when you were pregnant with your first, you probably fretted about lunch meat and soft cheese. You might have peppered your OB with 1000 questions about whether it’s okay to sleep on your side or continue your exercise of choice. Add to the fact that your intended parents have been on a long journey to get to this point. It’s probably been an emotional roller coaster and may have been marked with loss and heartache along the way. They desperately want a child and are probably anxious to make sure everything goes perfectly. Because of this, it’s very important for both the intended parents and the surrogate to discuss the values and beliefs together prior to signing any agreements and becoming pregnant. This way, everyone can ensure that they are on the same page and both parties are agreeable to the requests of the other.

When you work with a reputable agency, this tech setting up of standards and clarity of expectations is built into the process. Let’s talk a bit about reasonable versus unreasonable expectations and requirements intended parents can have in terms of what a surrogate can and cannot do with her body while pregnant with their child. Although intended parents cannot dictate or control the actions and choices made by the surrogate, it’s normal for them to have some requests. There are certainly a number of reasonable requests out there such as obtaining certain lab tests or maybe taking it easy after having a procedure done. Now lifting heavy items after undergoing the transfer or during a high risk pregnancy could be another reasonable request of the intended parents. They may even have some modesty requests within the labor and delivery room.

These are all typical and reasonable requests intended parents might make. It’s also completely reasonable to discuss general lifestyle questions and habits and to make simple requests but intended parents should really try to avoid giving their surrogate specific instructions. While it’s reasonable to expect she avoid smoking, drugs, and alcohol, it’s not reasonable to dictate what her daily meals include. This also means if she wants to go hiking in the mountains, run a half marathon or even ride a mechanical bull, might not be the best idea, but these are all the things she has the right to do. The surrogate should be respectful of the beliefs and requests of the intended parents within reason, of course, and just so you know, some of the stuff is going to be included, most likely in the gestational surrogacy agreements. So the likelihood that any of these things would occur is probably not that likely. But again, she still technically has the right to do it.

Surrogates, before we open that can of worms, I’d like to go through a list of some red flags to be aware of. If any of these occur in the early stages of speaking with an agency or potential intended parents run away and don’t look back. I always tell our clients too trust your gut and listen to your intuition. If something doesn’t feel right, it probably isn’t. While there were a lot of amazing reputable agencies and surrogacy professionals out there, there are also too many that lack the experience or integrity to protect and counsel potential surrogates. So what are those red flags?

First, if you aren’t being asked about your preferences early on, that’s a bad sign. You’ll want to proceed with caution because this might point to an agency that heavily favors intended parents. A good agency will serve the interests of both sides of an arrangement. If you’re pursuing surrogacy independently, for example, if you’re thinking about serving as a surrogate for a friend or family member, or acquaintance, or even a total stranger, be sure you feel comfortable advocating for yourself when you start discussions with the intended parents. If they have strong personalities and seems like the kind of people you might talk over you or steamroll through the process, I’d encourage you to back away.

Another red flag is not being properly informed about the physical, medical or psychological processes involved in surrogacy, you need to be fully informed and empowered every step of the way. If you don’t feel comfortable asking questions, even if you have what feels like a lot of them, that’s not a good sign. If you feel like the process is being glossed over or downplayed, that’s also a bad sign. Surrogacy is a huge commitment. Did you hear me, it is a huge commitment, and I would never want a woman to enter into it without a 100% complete picture of each aspect of the process.

The last red flag I mentioned is similar, if you feel rushed during the initial discussions, if you feel unable to speak up or slow the conversation in order to process information, do your own research, or ask more questions. That’s a major sign that this won’t be a good arrangement for you. Pump the brakes, and maybe get some second or third opinions. No reputable agency or intended parent who respects boundaries will rush you into something as monumental and life altering as agreeing to become a surrogate. And I can promise you right now the demand is so high for qualified well intention surrogates, you hold a lot of cards in terms of picking and choosing who you work with.

Let’s dive into some of the various medical, legal and ethical scenarios to be considered ahead of time. For example, what if the baby is breached? Maybe the surrogate doesn’t want to undergo surgery and chooses to have a natural delivery but the intended parents would rather the baby be delivered by C-section, which is considered less risky with breech babies. It’s ultimately going to be the surrogate’s choice and how she delivers, she has the right to make that decision based on her medical team’s advice. If the intended parents are present at the delivery, they can certainly voice their preference, but the surrogate is the patient and therefore is the only one who can consent to a procedure.

Another very important factor that intended parents and surrogates need to discuss ahead of time is how they feel about termination and reduction. Let’s say the initial ultrasound shows triplets, but the intended parents only wanted a singleton pregnancy and wish to reduce it to one. To begin with, this needs to have been fully discussed upfront with both an experienced attorney and the fertility clinic team. These days, most clinics strongly prefer to only transfer one embryo, greatly reducing the chances of multiples. It definitely still happens and this isn’t standard across the industry with some clinics transferring up to two embryos at a time or maybe in the same situation, the intended parents get past the shock of having triplets and are expecting and excited about it but the surrogate is not comfortable carrying three babies due to the extra strain it would put on her body and the additional appointments that would be necessary. How will both parties agree on either continuing the pregnancy or going through a reduction?

Another potential outcome to consider, what if the baby ends up with a life-altering anomaly, of some sort? Will they still continue with the pregnancy? Ultimately, no matter what the written surrogacy agreement says these decisions will be left up to the surrogate who is carrying the pregnancy. The surrogate has the right to choose whether or not she wishes to forego the pregnancy or have a reduction. If situations like this aren’t discussed ahead of time, things can get quite messy, because at the end of the day, there is not a single court in the United States that will force a woman to terminate a pregnancy even if there is a termination clause in a surrogacy contract.

And if the child she carries is not biologically hers, the Seraphina Harrell case is a stark example of this fact that made for a lot of sensational headlines and stirred intense ethical debate about surrogacy. In 2012, Crystal Kelly was matched with a married couple who experienced infertility. She agreed to serve as their gestational surrogate and the contract they signed outlined the basics of compensation, including the provision that the pregnancy will be terminated in case of severe birth defects. When Crystal was halfway through her pregnancy, an ultrasound revealed some terrible news: the baby she was carrying had multiple birth defects, and would have to endure multiple surgeries and procedures once born, severely diminishing her quality of life. The couple who hired Crystal to carry their baby offer her $10,000 to have an abortion. Of course, you should already be thinking what the party’s already crystal clear on their united plan on the issue of termination. Well, in this case, the intended parents and Crystal had not discussed this possibility, which is a major problem.

There was technically a clause in the contract that everyone signed but there had clearly not been true unity on the issue. The parties involved failed to actually talk about it, which to a degree I get, no one wants to dwell on worst-case scenarios. It’s easy to adopt the “it can’t happen to me” attitude but that’s a very risky point of view to take when it comes to literal matters of life and death. No matter how uncomfortable and emotional the conversation might get, it simply has to be done. Because what happened next, in this case, got messy, really messy, and in my opinion could have been avoided had all parties been led through an honest discussion with their surrogacy professionals.

So here’s what happened in this particular case, Crystal, the pregnant surrogate refused the abortion. Remember that although you can agree to termination in a contract, it is not legally possible to enforce the agreement on an unwilling pregnant woman. No court in the United States will order that to happen, period. This is exactly why all parties need to be in actual agreement. Having worked through all possible scenarios with a mental health professional. Of course, all the discussion and due diligence in the world can be done ahead of time and the surrogate still has the right to change her mind. But it’s far less likely to come to this if everyone is crystal clear from the beginning. Okay, back to the case. After a lot of tense legal back and forth, the surrogate, Crystal, made a drastic move from Connecticut, where she was living to Michigan, the headlines reported that she quote fled where according to that state’s law, she would be the baby’s legal parent, as surrogacy of any type is illegal there. Michigan would not recognize the parental rights of the couple who hired her so the pregnancy was able to continue to turn and Crystal gave birth to the baby whom she named Seraphina.

While she felt strongly that this baby deserved a chance at life, Crystal did not feel able to raise the baby herself. She was a single mother and was experiencing financial trouble, which side note the financial trouble was something that should have raised a red flag with the matching agency from the get go, but anyway digressed. Ultimately, she arranged for the child to be adopted by a family she had connected with during the legal battle. Soon after Seraphina was born, the Harrell family of Massachusetts, who are already raising several children with special needs, adopted her with Crystal’s blessings. This is the case that illustrates how important it is for all parties to be clear and completely aligned on important and weighty issues such as termination and it’s key to keep cases like this one in mind when discussing body autonomy in surrogacy.

These difficult and heart-wrenching scenarios can be avoided most of the time with clear communication between both parties prior to engaging in the surrogacy arrangement. The intended parents and surrogate should always talk in advance, have a clear, detailed legal contract, not one that was found online and you just figured out how to adjust it according to what you want in there and then use that as your contract. You need an attorney who specializes in family formation to draft these contracts and the surrogate needs separate legal counsel to review those contracts on her behalf. Please do not cut corners when it comes to legal contracts. When it comes to that gestational surrogacy agreement, it should not matter how much it costs, pay it. You will thank me later.

The latest and biggest issue we are currently seeing that involves bodily autonomy is whether or not the surrogate has or will receive the COVID vaccination. Whether or not a surrogate has been or will be vaccinated is definitely something that needs to be added to the discussion ahead of time to be sure that both parties are in agreement and share the same beliefs and views. Many intended parents are asking that their surrogate be vaccinated, although there are some requesting that their surrogate not be vaccinated. As you can imagine this is creating longer wait times as it takes a bit longer to find the right match now that there is this new important factor to take into consideration. There have been a lot of questions as to whether or not one should get the vaccine while pregnant, along with the fear that it might harm the baby.

However, the CDC recently announced on August 11, 2021, that new data shows the COVID-19 vaccine is safe and effective for pregnant people. The agency is officially recommending all pregnant people and those who are breastfeeding to get vaccinated. CDC Director Dr. Rochelle Willenski stated, “The vaccines are safe and effective and it has never been more urgent to increase vaccinations as we face the highly transmissible Delta variant and see severe outcomes from COVID-19 among unvaccinated pregnant people”. CDC analysis of data did not find an increased risk of miscarriage among nearly 2500 pregnant women who received an MRNA COVID-19 vaccine before 20 weeks of pregnancy. In general, miscarriage typically occurs in about 11 to 16% of pregnancies, and this study found miscarriage rates after receiving a COVID-19 vaccine were around 13%, similar to the expected rate of miscarriage in the general population. On the flip side, it appears that contracting the covid 19 virus, while pregnant may significantly increase the risk of miscarriage or stillbirth as well as significant harm to the pregnant person. Your immune system changes during pregnancy, makes you more susceptible to illnesses and infection. This is why from the beginning of the pandemic, pregnant women have been included in the high risk category along with the elderly people and the immunocompromised.

According to the CDC, “Pregnant and recently pregnant people are more likely to get severely ill from COVID-19 compared to non pregnant people. Pregnancy causes changes in the body that could make it easier to get very sick from respiratory viruses like the one that causes COVID-19. These changes in the body can continue after pregnancy. Severe illness means that a person with COVID-19 may need hospitalization, intensive care, a ventilator or special equipment to help them breathe.” The agency goes on to say again, “Other factors can further increase a pregnant or recently pregnant person’s risk for getting severely ill from COVID-19 such as having certain underlying medical conditions being older than 25 years old, living or working in a community with high numbers of COVID-19 cases, living or working in a community with low levels of COVID-19 vaccination, working in places where it’s difficult or not possible to keep at least six feet apart from people who might be sick, and being part of some racial and ethnic minority groups, which have been put an increased risk of getting sick from COVID-19 because of the health inequities they face”. COVID-net, which is partnered with the CDC, states that pregnant women who contract the virus have a 30.1% chance of hospitalization.

A heartbreaking story that hit the news recently of a pregnant woman who died before ever meeting her fifth child, a newborn baby born prematurely as her mother fought the disease. The woman was 37 years old, healthy and worked as a labor and delivery nurse. She and her husband had chosen to not get vaccinated yet, her husband was also hospitalized with the virus and was in critical condition for quite some time. As of this recording, the family reports that he is healing, though clearly experiencing the grief of losing his wife and mother of their five children. It’s stories like these that highlight the trauma and grief that can come from not being vaccinated.

These stories combined with mountains of evidence and the recommendation of multiple respected bodies of scientists and physicians that has helped me and other agencies make the decision to require COVID-19 vaccinations for all of the surrogates through our program. Now, not only do the vast majority of intended parents request this, the decision is supported by the medical and scientific community as a whole, ASRM, fertility clinics, and other professionals within the industry. That being said, in terms of bodily autonomy, no one can make anyone get the vaccine. This is of course your own personal choice, however, participation in the public health arena can be regulated and limited for those who refuse to participate. Should you choose to not be vaccinated you are in effect greatly limiting your ability to serve as a surrogate.

As more and more fertility clinics begin to require the COVID-19 vaccine to help bring this pandemic to a close, that’s a choice, you’re going to have to weigh. A surrogate, just like anyone else, has the right to make the decisions about what happens to their body. Everything from choosing the types of food and drinks that go into her body, types of activities to partake in, or whether or not she will get a vaccination of any kind. No matter the scenario, anyone interested in entering into a surrogacy agreement, they must protect themselves by 1. finding an experienced attorney to represent you.

While the fees will be paid by the intended parents, this attorney works for you and you alone and must be separate from the attorney who represents the parents. Next, be sure to choose an established agency with a long track record and plenty of positive reviews. Ask to review testimonials or be put in contact with former agency surrogates. You can even do your own sleuthing by going into Facebook groups for surrogates. Search for the agency name and post a question asking for feedback about them. Speak up and ask questions no matter how small or seemingly trivial. You can’t annoy a good agency with too many questions.

Let’s switch gears now and talk about bodily autonomy and how it relates to women who choose to be egg donors. Egg donors are, by category, young women. Most donors are required to be between the ages of 21 and 29, with the large majority being college or graduate students. The reason for this is mostly biological. Women in this age range tend to have the highest quality of eggs and are better able to tolerate the medications and procedures, generally speaking, of course. It’s also because of demographic factors, at least in the United States.

Women in America are having babies later in life than ever before. The average age for a woman to have her first child is 26, up from 21, just a couple of decades ago. More women are delaying marriage, putting off motherhood in favor of a career, or simply waiting for more financial stability at a later stage of life. So this means more women in this age range are willing and able to donate their eggs rather than start growing their own family.

The age of potential egg donors brings up an important question about bodily autonomy. Are younger women more or less likely to speak up when they have a question or want to push back on medical professionals’ guidance? Is it easier to persuade a younger woman to do something that might not be in her best interest? I hate to say it but there are less-than-ethical businesses out there that specifically target young college-age women with marketing that over promise how easy the donation process is.

They lean into the fact that this demographic will likely be heading into the workforce, with loads of student loan debt, and earning money via egg donation is sold as a quick way to make significant money. And the money is significant. Donors can earn anywhere from six to $10,000, sometimes more if they meet exceptional or hard to find criteria, but the process is involved and there are deep questions and honest reflection which is required. I personally experienced this as a first time donor. I was led to egg donation after becoming a kidney donor for my cousin and

I expected to have a similar experience of feeling like I was making a difference in a real person’s life. Instead, it felt like a very rushed and impersonal experience, like I was just another donor among many. Despite the sour taste this left in my mouth, I went on to complete journeys that were extremely fulfilling. I felt empowered throughout the process like I was in control and had the autonomy to ask questions, pause the process and in general be more active and mindful throughout and I went on to donate my eggs a total of six times.

My experience with this is in large part why I decided to start my own surrogacy and egg donation agency because I saw a huge need for ethical agencies that empower women to make their own informed decisions. If in the early stages of the surrogacy or egg donation process, you’re not asked about your preferences, not told what physical or medical process entails, or if you feel as though you’re being rushed into something without a clear explanation, or an opportunity to ask questions, you may want to rethink things. These are all big red flags to watch out for. It’s important to have good, clear conversations prior to entering into an agreement and quite frankly, prior to entering into any agreement in life. So be mindful of what it is that you’re getting yourself into. What much of this discussion comes down to is the question of informed consent. In the United States, there is no federal regulation about informed consent with egg donation. The few light regulations that do exist have to do with safety testing for communicable diseases, similar to the regulations for donating blood, and truth in advertising disclosures.

There’s nothing on the books about making sure the person who donates is fully informed and understands enough to make a decision. In an article published in the American Medical Associations Journal of Ethics in 2014, begins with this scenario quote. Jessica saw the ads on her college campus. “Egg donor wanted. High SAT scores. Willing to pay. Contact egg donors are us.” She was a financially struggling college junior and the idea of helping people have children appealed to her. She called egg donors auras and after the receptionist asked her a few questions, she was invited to come to the clinic and fill out a questionnaire and asked for example, if she had dimples and freckles but not as she understood the medical procedures or risks involved in egg donation. She was given a provisional acceptance, had an interview with the nurse and a psychological consultant, and then have blood drawn for final eligibility checks. A few months later, she was matched with the recipient and finally given the clinic’s informed consent form, she barely looked at it before signing, she was excited to begin the process that would help another woman as well as pay her tuition bills. The question here becomes what did Jessica sign? What exactly did she agree to? And how much of the process did she really understand?

The truth is it’s pretty much up to the discretion of the fertility clinic or donor agency to decide what and how to disclose the information. This places the burden of knowledge seeking on the young woman who in the most likely scenario was enticed by the promise of significant financial compensation. In a vacuum of federal or state regulations, most clinics and agencies look to the guidance of American Society for Reproductive Medicine or the ASRM but this organization has no actual enforcement ability. It just makes strong recommendations. Here are some of those strong recommendations: psychological evaluation and counseling. These are strongly recommended for donors and genetic evaluation should be performed.

Potential donors should be informed about all aspects of the medical procedure from start to finish. There should be informed discussion about the potential risks including Ovarian Hyperstimulation, which is a rare but serious complication, a discussion about the possible emotional outcomes or sense of loss that some donors feel. Disclosure that egg donation resulting in a child may result in the child trying to find and identify them someday. Disclosure that the donation may be used for either reproductive or research purposes, the latter of which could pose some serious religious or ethical issues for some donors. True informed consent isn’t just handing a person a piece of paper with fine print to be signed, or even asking them to watch an informational video. It needs to be much more in depth than that. And for a young woman to truly feel that she has full autonomy over her own body and medical decisions, she needs to feel empowered to discuss each and every aspect with a medical or mental health professional along with a legal counsel.

Right now, the burden is placed on the prospective donor to ask the questions and inform herself, at least in most cases. The donor-led, all-volunteer organization we are egg donors, was founded by former egg donors to help fill in the gaps left by a lack of regulation on the industry. On their blog, they’ve compiled a list of potential red flags to look out for as a possible egg donor. Let me just go over a few.

The first is if the clinic or agency downplays the lack of research about long term health effects, saying there are “no long term risks is different than saying there are no known long term risks”. The second is actually true, as no long term studies have been done. An ethical clinical or agency will make this clear and will direct women to available credible sources such as ASRM.

The next red flag is if a clinic aims for retrieving a high number of eggs. During the IVF cycle, the goal is to retrieve 10 to 15 eggs. Egg donors are sometimes stimulated to the point of producing 30 or even 40 plus eggs. This creates a high risk for ovarian hyperstimulation syndrome, which can have serious health complications. If the clinic has a goal of more than 20 to 30 eggs, find out why and feel empowered to stop treatment. They also suggest being wary of shared egg donor programs or split cycles that reduce cost for intended parents. While this is more cost effective for recipients, it encourages doctors to strive for a greater volume of eggs at the potential expense of the donor’s health.

The fifth red flag is a clinic or agency that won’t give you access to your medical records from the donation cycle. It surprises a lot of people to find out that gamete, meaning egg or sperm donors, are exempt from HIPAA, so you don’t technically have a legal right to your records from a donation cycle. Find out how your records are handled, and feel free to back out if you don’t get the answer you want.

Red flag number six is an agency that has you share legal representation with the intended parents. This definitely saves money for the clinic or agency, but it’s actually a breach of professional ethics for an attorney to represent both sides of a contract. You must have your own independent counsel and you do not have to pay for it yourself. This is a service that should be provided by the clinic or agency you work with.

The last red flag involves anonymity. Today, if any clinic or agency promises you 100% anonymous donation, they are not telling the truth. There is no guarantee of anonymity anymore, not with the prevalence of consumer DNA kits. Just search Tik Tok for donor-conceived and you’ll see what I mean. It is literally impossible these days to guarantee anonymity, and that simply one obstacle the industry will have to overcome. It does seem to be limiting the number of willing donors, but the answer is not to gloss over the reality just to recruit someone into a donation program.

As you can see, there was a lot more to egg donation than a simple advertisement in a college newspaper or Facebook ad would lead you to believe. Approaching the process armed with information and the confidence to ask as many questions as you want is the best way to ensure a positive experience.

The advice I leave you with about maintaining autonomy as you decide whether to become a surrogate or an egg donor is this, trust your instincts. It’s what I tell my potential clients. It’s what I tell my own adult children. It’s how I learned through trial and error to choose surrogacy and egg donation experiences for myself. If something feels off, it probably is. And the truth is as a potential surrogate or egg donor, you hold the cards. You are much needed and highly sought after which means you should feel empowered to say no, and to any opportunity that sounds too good to be true, feels off or that makes you feel rushed, unheard or dismissed. There are plenty of ethical agencies and clinics out there that truly have your best interest in mind. So don’t be afraid to keep looking and if along the way you decide that this path isn’t for you, that is your decision and one that you owe no one an apology for. Your body, your choice, no matter what. I hope you found this discussion helpful as you weigh your next steps.

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