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The Parents Via Egg Donation Organization: September 2009

Monday, September 28, 2009

Embryo Donation and Embryo Adoption - How Are They Different?

The subjects of embryo adoption and embryo donation have appeared on my radar or the past couple of weeks. It’s given me pause for thought.

And my thoughts have honestly been troubled.

The first time I heard the term embryo adoption and embryo donation I thought the two terms were interchangeable, almost the same. And then I began to read, and research -- then I began to go to embryo adoption sites and I learned in a heck of a hurry there is a huge difference.

We frequently hear organizations using the term ”embryo adoption” and then go on to treat the donation as a traditional adoption. Lots of these organizations require home studies, lengthy application processes, and costly up-front fees which leaves a bad taste in my mouth.

Legally the terminology “adoption” means that a child has already been born and is being placed into a waiting family. In regards to embryo donation -- a child will be born into a waiting family carried either by the recipient mother or a gestational carrier, with the recipient couple being named on a birth certificate as parents.

Now, in most states embryo donation is handled as a transfer of private party, clinics view this as a donation of cells or tissue.

In fact a poll conducted by Harris Interactive states that the general public prefers the term “donation” by a margin of 2:1 over “adoption” because that’s what it is. PVED like Miracles Waiting feels that embryo donation more accurately describes the process of giving and receiving embryos, and chooses to use this terminology.

The differences between embryo donation and embryo adoption:

· When embryos are donated the recipient(s) don’t have a home study prepared. Some embryo adoption agencies want you to believe that it’s a cold, impersonal process which isn’t true at all. While in some cases there is no contact between families in many cases the donating party and the recipient party do indeed forge a relationship and if they are fortunate to have a child out of that donation more often than not the families agree to share this information with their children. All of these agreements are worked out through the help of an attorney who creates a contract that both parties sign.

· There is no money exchanged between parties. Zero. All monies are paid to the fertility clinic that is performing the embryo transfer, to a psychologist who meets with both couples, and the attorney who is preparing the contract. The donating couple in most cases has their attorney fees paid by the recipient couple and the psychologist who meets with both parties to talk about feelings, agreements, or questions they both might have about embryo donation and what it means for their family.

· Embryo donation happens in several ways. A couple that has finished creating or growing their family can donate their embryos to their fertility clinic. Their fertility clinic then finds a recipient couple to receive those embryos. The donating party doesn’t always know who the recipients are and this is considered anonymous donation. The donating couple can also use services like Miracles Waiting that don’t actually match but provide the means and ability to find recipients the meet their criteria. PVED also helps with the matching process within their forum and connects both donating and recipient parties. A donating couple can also befriend recipients they meet in their life, begin a conversation, and decide to donate embryos to people they already know which is referred to a directed donation.

· Embryo adoption requires a home study that is conducted by an agency and their social workers. This includes completing a lengthy application, providing financial records to prove you have enough money to care for your child, back ground checks, education, medical screening, and psych screening.

· Embryo adoption allows you in most cases to select the family you wish to receive your embryos. You also have the ability to have a directed adoption or in some cases you can adopt out your embryos anonymously.
My problem with embryo adoption agencies is again “from a legal perspective, the terminology “adoption” implies that a child has already been born and is being placed into a family. In the case of embryo donation, the child will be born into the family, with the recipient couple being named on the birth certificate as parents.”
(source: http://www.miracleswaiting.org/understanding.html#q1)

As Amy Dema a New York State licensed attorney, and a long-term family and children's advocate so aptly put it:

"My position is that "embryo adoption" and all aspects of that model are inappropriate legally, psychosocially and in other ways. I disagree with imposing any process or procedure that is adoption based on this alternative family building option. When I speak on Embryo Donation, I start with disconnecting from the "adoption" approach. Folks need to know that the Christian -based organizations that push "embryo adoption" (and home studies) have an agenda greater than offering alternative family building and the more awareness and education that is offered regarding "embryo donation" the less, I hope, we will hear about these inappropriate practices."

And I am totally on the same page as Ms. Demma -- How can you possibly adopt something that’s not even there yet?

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Thursday, September 24, 2009

My Egg Donor Is A Hooker? I Don't Think So...

When I read Professor Naomi Pfeffer’s article titled “Paying poor foreign women for eggs is 'a kind of prostitution’ “I blinked and then I blinked again. And then I took a deep breath and shook my head and muttered a few well chosen words under my breath and read this article once again.

Needless to say this chick really chaps my hide.

Egg donation is a form of exploitation? Oh please.

I understand in the IF community why and how it’s important to educate our patients and clients. Sometimes information is misconstrued or not clear and it’s our job as nurses, doctors, lawyers, agency owners, health educators, advocates and infertility information specialists to make sure the information that’s being shared and placed in the infertility community is correct, up-to-date, and timely.

HOWEVER, it’s really irritating to me to have to educate an infertility expert and so Ms. Pfeffer I will give it my best shot:

First I want to define the word prostitute so there is no question what the word means.
pros·ti·tute (prst-tt, -tyt)
n.
1. One who solicits and accepts payment for sex acts.
2. One who sells one's abilities, talent, or name for an unworthy purpose.

My first question would be “Do you know what egg donation is?” It’s collecting eggs from a woman, who then gives those eggs to a recipient couple or recipient parent who then has those eggs fertilized in a LABORATORY, and then the embryos that are developed and grown in that laboratory are then placed back into the waiting uterus of recipient mother.

Nowhere during this process does sex or any sort of sexual conduct enter into the picture. In fact, all egg donors are given strict orders to ABSTAIN from sex of any kind for the duration of the egg donation cycle.

I just wanted to clear the sex part up, so we are all on the same page about that.

The second part of the definition of prostitution is selling one’s abilities, talent, or name for an unworthy purpose.
Are you suggesting Ms. Pfeffer that egg donation in an unworthy purpose? Or that helping an infertile couple have the chance of becoming parents is unworthy?

Our egg donors come in all shapes, sizes, from varying backgrounds. We are grateful, damn grateful for each and every one of them.

Do they receive compensation? Absolutely. And why shouldn't they? Egg donation is not a fun process. It’s a highly regimented, choreographed exact process. Multiple medications are required to be administered through injections. The egg donor is required to agree to dietary changes (no coffee, no alcohol), as well as social changes, (no sex whatsoever from the beginning to the end of the cycle), and then the egg donor is required to undergo a surgical procedure where n ultrasound probe will be inserted into the vagina. A thin needle attached to the probe will be inserted into each follicle. Using suction, the egg and liquid inside each follicle are removed. Egg donors are given a light anesthesia during the retrieval, which lasts about 30 minutes. And then they recover which takes about a month.

Let me tell you – it’s not a picnic.

I understand that over in the UK right now there’s a huge debate in regards to egg donation because they ban compensation to egg donors and the majority of UK’s egg donors don’t want to go through the process without being compensated. And really what’s wrong with that?

Ms. Pfeffer says we recipient mothers are exploiting our egg donors. Yes, we recipient mothers who have waded through the jungle of infertility and gone through the depths of hell all in the effort to become a mother are now accused of exploiting our egg donors because we compensate them for their time, discomfort, and inconvenience.

Well gosh, thanks a lot. Thanks for shaming infertile couples all over the world who want to have children who are choosing to travel to do so. Thanks for shaming us and intimating what we are doing is bad, wrong, and that we should be embarrassed because what we are doing is morally not okay. And last but not least thank you for suggesting we be embarrassed when we talk to our children about egg donation – as we tell them we exploited the woman who helped us have them?

First of all, I am not my son’s social mother Ms. Pfeffer, I am my son’s ONLY mother but I will save that for another blog post, and secondly, I don’t know about your home, but in our home egg donation is a beautiful thing. It’s not something to be ashamed about or hidden.

When reading Ms. Pfeffer’s article I continued to shake my head. As a recipient mother via egg donation, and an infertile woman – when can I say “Enough is enough?”

Isn’t having over 300 menstrual periods in my lifetime and no baby a high enough price to pay? Isn’t nine miscarriages over the course of my reproductive life a high enough price to pay? Isn’t over 100 negative pregnancy tests, and thousands and thousands of dollars spent a high enough price to pay?

Haven’t I fairly paid my dues Ms. Pfeffer? Haven’t we been through enough and now you are accusing me of exploiting my egg donor because I compensated her?

Please.

I will say in the United States, Spain, Czech Republic, and the Ukraine egg donor are treated respectfully, carefully, and responsibly. After all, they are human beings, and are patients, just like you and I. They undergo medical testing, they are educated about what is going to happen to their bodies, and they make the final decision whether to donate eggs or not. They are not rounding up egg donors on the street and forcing them to undergo egg donation. It’s not how it’s done.
My other question is – What’s wrong with compensating an egg donor who agrees to donate her eggs? She’s a consenting adult. I notice you say nothing about sperm donors. Are they exploited as well? Why is it time and time again women who are focused on and picked on? Are you saying we are not smart enough to make the right decisions for ourselves and our bodies?

Here in the United States the ASRM (American Society for Reproductive Medicine) has strict guidelines in regards to donor compensation. Why? Because we do understand about the concern of exploitation, and that’s why these guidelines have been in place and implemented. We have an overall concern for the health and welfare of our egg donors who generously give a part of them to those of us who want nothing more than to become mothers.

I think before you make wide sweeping blanket statements Ms. Pfeffer you should really stop and think about the impact of your words to not only recipient parents but to egg donors as well.

What I think perhaps what you could have or should have said is that you have a concern about egg donors throughout the world. And your concern is that you aren’t sure (because you aren’t) if egg donors in each country throughout the world are treated with the same respect, and care as they are in the United Kingdom or the United States – and you could have listed the concerns you have and wonder about process and practices throughout the world regarding egg donation.

But you didn’t. You have lumped us all together and attempted to shame us in the process.

As I sit here thinking fond thoughts about my amazing egg donor while looking at a photo of my smiling boy who I gave birth to in 2000 through egg donation I don’t think for two seconds she felt exploited. I think she felt excited and hopeful for us. She was rooting for us the entire way as much as we were rooting for ourselves. The letters we exchanged between the two of us were filled with love and hope. They weren’t filled with angst and doubt.

And I for one felt really good about helping her put a dent in her student loan. It’s the least I could have done – as we all know there is no price on the value of our children. No amount of money could have adequately compensated her for the gift she has given me.

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Thursday, September 10, 2009

The Differences and Similarities Between Adoption And Egg Donation

I had the opportunity to be a part of a panel on a radio show hosted by Dawn Davenport who is the Executive Director of Creating A Family which is a nonprofit organization that provides education, resources, and support for those touched by infertility or adoption.

On the panel with me was a gentleman by the name of Adam Pertman, Executive Director, with the Evan B. Donaldson Adoption Institute.

To be honest I wasn't really sure how this was going to pan out. I have heard through the grapevine how similar yet different adoption and egg donation were, but still wasn't clear on terminology or philosophies.

As we began our radio show I was nervous. Here I was with this Executive Director from the Adoption Institute who works diligently to provide leadership that improves adoption laws, policies and practices - through sound research, education and advocacy - in order to better the lives of everyone touched by adoption. These folks are serious about their mission.

They work tirelessly:

•Offering lawmakers reliable information and practical perspectives to improve adoption laws;
•Providing the media with a trusted source of information;
•Encouraging employer support for adoption;
•Reducing barriers that impede adoption of children who need permanent families;
•Researching policies and practices that affect adoption;
•Educating policymakers and the public about the importance of giving adopted people access to information about their origins;
•Developing a legal framework to ensure access to genetic information and a clear delineation of parental responsibility for children born through reproductive technology;
•Promoting ethical standards for adoption professionals

And as I listened to Adam speak I found myself sitting up in my chair a bit straighter and nodding my head. He was saying the very same things many of us find ourselves saying as we go through our own personal DE journey. Both from an adoptive perspective and a recipient mother perspective we both share the same kinds of insecurities.

Will my child love me? Will I make a good parent? Why didn't my body work the way it was supposed to? How long will I grieve regarding the ability to have a genetic child? When my child hears his or her story about their origins will they become resentful. Will my child like his birth mother or egg donor more than me? When should we tell our child about their origins? Early? Late, or not at all?

What I am learning more and more is that those of us having our children via egg donation should really look at, embrace, and follow the adoptive parents module. As it stands DE is where adoption was regarding attitudes and secrecy 30 years ago. And to me that's very sad because there is nothing to be ashamed about regarding having a child via egg donation, it's a beautiful thing and just a different way to create or grow your family.

What separates the two of course is the pregnancy part. In my radio broadcast I touched upon Epigenics, and how pregnancy for recipient mothers is an integral and very important part of the process, and while at the end of the day the goal is to become a parent and raise a child I stated emphatically that it's very important that we recognize and validate this rite of passage for many women.

What we do need to establish is clear and consistent language, definitions and verbiage for this specific kind of reproductive technology. The adoption folks have their language, and it's clear, and concise. DE doesn't have that as of yet. We might think we do, but really we don't. We are still wrestling with what to deem the egg donor and a sperm donor. We know for instance in adoption that the woman who carries the baby and the man who has intercourse with a woman and a child results is a birth father. So what should we refer our egg donors and sperm donors as? Genetic parents? That in itself might seem very simple but how do we know egg donors or sperm donors want to be thought of as parents at all?

Food for thought - yes?

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Tuesday, September 1, 2009

What happens to extra embryos after IVF?

From CNN:

By Laura Beil

By the time she was in her 40s, Andrea Cinnamond was afraid she'd never be a mother. Then came the day in 2005 her daughter was born through in vitro fertilization, followed two years later by twin sons. Today, Kaitlin, Jack, and Aidan bounce around like Ping-Pong balls through their Boston, Massachusetts, home.

Cinnamond, now 49, and her husband are grateful for their healthy children and the medical science that helped create them. Yet she's haunted by the three embryos that were left over.

Like many women struggling with infertility, Cinnamond was delighted when a laboratory took sperm and egg and provided five chances for a second child after Kaitlin's birth. In many ways, infertility is a numbers game -- more embryos created means more tries for success. She was asked in the beginning about the matter of surplus embryos, but how could she think about those she might not want when her thoughts were consumed by the children she longed for?

When the time came to decide about the extras, she says, "I thought I was going to be calm and casual." And she was, until the first bill arrived to keep the embryos frozen. "I was petrified," she says. "There was no practical reason to keep them. I just wasn't ready to make the decision not to keep them." She paid the $600, hoping that her thoughts would crystallize as time passed. This year, she's paying the bill again.

Michelle DeCrane of Austin, Texas, has also been paying for embryo storage for two years. She has a 2-year-old daughter -- and six frozen embryos. "I would love to have another baby, if I were younger -- I'm 40 -- and if money was not an object." She finds herself trapped in a mental loop; while she doesn't have the same mind-blowing love for the embryos as she has for her daughter, neither does she consider them anonymous laboratory tissue. And there's another wrinkle: One of the six embryos is biologically hers and her husband's; the five others were created with donor eggs and his sperm. "What do people do?" she asks. "You have all of these embryos in all of these labs. Are people going to keep doing what I'm doing and pay the $40 a month ad infinitum?"

Some will. Experts estimate that hundreds of thousands of embryos have accumulated in fertility clinics throughout the country, some awaiting transfer but many literally frozen in time as parents ask themselves questions few among us ever consider with such immediacy: When does life begin? What does "life" mean, anyway?

In a recent survey of 58 couples, researchers from the University of California in San Francisco found that 72 percent were undecided about the fate of their stored embryos. In another study last year of more than 1,000 fertility patients from nine clinics, 20 percent of couples who wanted no more children said they planned or expected to keep their embryos frozen indefinitely. Couples have held on to embryos for five years or more, waiting on an epiphany that never comes. Nadya Suleman, the now-famous mother of octuplets, told NBC News that she had all eight of her embryos implanted because she couldn't bear to dispose of any of them.

"When you're pouring your money, your heart, and your soul into creating an embryo and creating a life, the last thing you want to think about is how you're going to dispose of it," says Anne Drapkin Lyerly, M.D., a professor of obstetrics and gynecology at Duke University Medical Center. Until the storage fee comes due. At that point, couples generally have to choose among four options:

Donating to other infertile couples

The first thing many parents want, once they've finished forming their own families, is to let another infertile couple have the embryos. "On the face of it, it's one of the most beautiful, altruistic things in the world," says Bill Petok, Ph.D., a Baltimore, Maryland, psychologist who specializes in counseling infertile couples. Yet, he adds, donating your embryos can be an emotionally fraught process, and depending on the state you live in and your clinic, it can be legally complex as well. The process may be as simple as filling out paperwork or as involved as hiring an attorney to navigate a legal labyrinth and locate a recipient family. Parenting.com: The right way to space siblings (for you)

Many couples find they can't cope with the unknowns. Will other parents love the siblings of your children as much as you love your own kids? Would you ever stop worrying about them? Would you want to stay in contact with the family? Deborah Bohn, whose children are 6 and 8, knew she wanted to donate her five unused embryos to another couple to give them a chance at birth, but she didn't want to know anything more. "I couldn't take the thought of knowing I had another child," she says. "I knew my heart couldn't handle it. We're all better off not knowing." Though she now lives in Nashville, Tennessee, her embryos were stored in a California clinic, which was set up to handle the donation. She and her husband were able to stipulate basic terms, such as the education level and religion of the parents receiving the donated embryos, and they accomplished the entire transfer just by filling out forms and sending them to their clinic. "It was probably the hardest decision I've ever had to make," Bohn says. "I cried tons." Yet she has no regrets, and today, no sadness.

Donating to medical research

Stephanie Smith of Odessa, Missouri, would have liked more children through in vitro, but complications from the birth of her twin girls two years ago left her unable to get pregnant again. She had five embryos left and spent more than a year reconciling her choices with her religious convictions. Those five clusters of cells forced her to think, almost daily, about how she defined life. She considers herself pro-life, so donating to another infertile couple felt natural. The more she and her husband thought about it, however, the more unsettled they became. The questions she had were too big to be left unanswered. She didn't know if she'd ever stop searching crowds for little girls who looked just like hers. "It's a life-altering decision," she says.

They eventually decided to donate the embryos for medical research, as a gesture of gratitude to a system that had given them their dreams. "We were ultimately still giving life, just not for those particular five embryos," she says.

Many couples find donating to research a middle ground that gives the embryos a status somewhere between born children and simple clumps of cells. Although the embryos will not survive, giving to science can be a very caring act, says Lyerly, who has studied the issues surrounding frozen embryos. Couples who donate to research, she says, "feel like they were helped by science and they want to give back."

Thawing without donating

Some couples find themselves unable to escape the shadows of infertility without allowing their embryos to pass on naturally and with respect. Lyerly knows of a few women who've found a doctor willing to perform a "compassionate transfer," implanting the embryos into the woman at a time pregnancy is unlikely -- envisioning it as a way to return the embryos to their keeping. Other couples want to perform a ceremony of some sort during the thawing and disposal to show their reverence.

Some parents who want other choices besides thawing discover that they have none. Kelly Damron of Phoenix, Arizona, was hoping to donate her three embryos to science after she'd had her twins through in vitro. "Our clinic said that wasn't an option," she says. She wishes now she had asked about the possibilities for unused embryos before choosing a physician. "I asked every other imaginable question," she says. "I didn't even think to ask that one." So she paid for another year of storage; it was too hard to let go at that moment. But, eventually, she did. "Some days I wish they were still there," Damron says. "I wouldn't say that I grieved for them, but I definitely had feelings about the loss."

Postponing the decision

Many parents find they are simply unable to decide. But experts caution that stalling too long might unintentionally shift the dilemma onto someone else. Parents die. Marriages end. People move and forget to tell the clinic, leaving fertility-center staff with unpaid bills and their own difficult choice. "Not making a decision is clearly making a decision," Petok says. One Houston couple, after filing for divorce, fought a legal battle for more than five years over custody of their frozen embryos. She wanted them implanted in herself so that she could have a baby; he wanted them destroyed. In 2008, the woman lost the case.

And sometimes, couples decide the mental paralysis will never go away. "I don't think anybody knows what their opinion is until they're in this situation," says Ginny Scott of Austin, Texas. She had one embryo left after giving birth to her children, now 7 and 6. After two years of deliberating possibilities that never seemed right, she and her husband decided to use it to have another baby -- her now 3-year-old daughter. One unused embryo, she says, "changed my whole life." She's thankful for her daughter, but also thankful she had only one embryo remaining. Parenting.com: Will you still be fertile in 5 years?

Consider the predicament of Kim Maksymuik, a mother of twins who lives near Toronto, Canada, and who has stored five embryos for more than five years. "Every time that bill came in the mail, I couldn't say 'Just let them go,'" she says. Today, at 48, she's decided to have more children, even, if necessary, through a surrogate. "It's a very emotional journey," she says -- a journey to a place she thought she'd left behind.

The promise of stem cell research

Fewer than two months after taking office in January, President Obama lifted restrictions on federal funding for stem cell research, reversing a policy that had put surplus embryos at the crossroads of science, ethics, and religion for eight years.

Researchers are interested in embryonic stem cells because they have the unique potential to become any type of cell in the body and may hold promise for treating conditions such as Alzheimer's disease, Parkinson's, spinal-cord injuries, and others that involve the death of brain cells and other nerve tissue. But research had been greatly impeded because scientists were limited to using stem cell lines that were created before August 2001.

The lifting of the ban means that eventually more parents should be able to donate unused embryos for this research. "The reason this kind of donation is so appealing is that it doesn't just end with the embryos," says Cecily Kellogg of Philadelphia, Pennsylvania. "The cells have a good chance of being used for years and years." After the birth of her daughter three years ago through IVF, Kellogg had eight unused embryos; a placental abruption after that birth and a life-threatening complication with a previous pregnancy meant that future pregnancies were not recommended. Because her mother-in-law has Alzheimer's, she and her husband found it heartening that they might be able to help research. At the time she and her husband were making their decision, Kellogg was told that she couldn't donate her embryos from her home state; but because they were created across the border in New Jersey, donation was possible and rather easy.

The new law won't necessarily end the patchwork nature of stem cell research funding. Almost immediately following the March announcement from the Obama administration, some state governments moved to restrict such research. So the laws -- and simplicity of donation -- may still vary from state to state, and could change as states ease or tighten restrictions. The full impact of the policy won't be clear until the National Institutes of Health issues new guidelines on embryonic stem cell research. To learn more, visit stemcells.nih.gov

Getting more help

The professionals at fertility clinics may be supportive about the issue of leftover embryos -- but couples shouldn't be shocked if they aren't, says Barbara Collura, executive director of RESOLVE: The National Infertility Association. Clinic staff often don't want to discuss options they aren't set up to handle, or they don't want to be seen as advocating one choice over another. "They don't want to be in a position where someone says, 'You advised me to donate my embryos and it was a huge mistake,'" she says.

If your clinic isn't providing the help you need, there are heavily trafficked blogs, chat rooms, and other places online to find more information. Some examples:

The American Society for Reproductive Medicine can help you locate a counselor trained to help undecided couples explore their options and sort through the legal and emotional complications. Click on the link for "Mental Health Professionals."

Lawyer and radio host Dawn Davenport's Web site (Creatingafamily.com) has a list of resources for couples. You can also listen to a series of radio shows she produced on the issue in May and June 2008.

The American Fertility Association has a fact sheet on choices, and a toll-free number couples can call for support.

The RESOLVE Web site provides info on donating embryos to other couples and locations for workshops on the legal, medical, and mental-health aspects of this topic, both for prospective donors and for recipients.

Laura Beil regularly writes about health and science. Her work has appeared in The New York Times, Newsweek, and Self. She lives with her family in Dallas, Texas

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