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The Parents Via Egg Donation Organization: December 2011

Thursday, December 22, 2011

For Intended Parents Regarding Your Egg Donor Contracts: Before you sign on the dotted line...

I’ll be honest in March of 2000 when I embarked upon my donor egg cycle I made a mistake. I was afraid, intimidated, and overwhelmed by the whole process.  The idea of accepting someone else’s genetics to create my family seemed so “out there” – Star Trekish I guess?  So when the agreement between myself and the clinic was presented to me stating my cycle would be completely anonymous I didn’t question it.  The notion of knowing my egg donor, seeing her face, or oh my god having a “relationship” with her was just so over the top – no way. 
I felt so strongly about this I found myself saying “I don’t want her face taking up my head space”  “I am the only mother my child will need”  “All I did was receive a cell from her, that’s all everything else is all on me” 
And while the above is true my insecurities are making decisions for my child’s right to know his origins, it’s not right.  It took me a while to become confident and secure in who I was as my child’s mother.  Once I was there the whole not genetically related component quietly faded into the woodwork.  What was left – doing the right thing by my son, led by his direction regarding information and what kind of connection if any he might want with his egg donor.
I used to think when I’d read the writings of those kids born from donor sperm say they felt that half of their identity was missing that they were being overly dramatic or  experiencing classic teenage angst.  But the reality is even though it’s just a strand of DNA – it really is “their” DNA, it’s their strand, it makes up genetically half of who they are.  For them to want to know that piece is really okay.  And it should be. 
It’s not up to me to deny him that.
Over the years the conversations with my son about his origins have been many.  Mostly funny, always poignant and meaningful – I marvel at how much I learn from my child each and every time we talk about the donor aspect of his life.
For those that know me, allowing someone else to lead the way or direct a path that needs to be followed is so foreign to me for I have always been the take charge; lead the way kind of a person. This has been truly a humbling experience because for once it’s not all about me. 
It’s about my child and his needs.
In the beginning when he first began to comprehend his story he was fascinated with coming from a magic egg and having an “Angel Lady” help his mamma have a baby.  As he got older he began to as more questions about his egg donor.  He wanted to know what she was like, and I couldn’t tell him.  The only information I had was what was on a profile that was given to me when we selected her.  My son also wanted to know what she looked like. “Do I look like her mom?”  “I wonder if we look alike.” He now wonders if she is a nice person.  He wonders what her parents are like or what her siblings are like.  Really, all very normal questions for a kid his age to have. He wonders about his English and Norwegian heritage.  All things I can’t really tell him about because I don’t have the information.
Not knowing this information I don’t think is going to make or break him as a little boy, or damage him as he grows into adulthood but looking back on “all of this” I wish if I could change one thing it would be that I didn’t make my choices out of fear.  I wish that I had met her, or at least had the ability to contact her at a later date.  As it stands now that might never happen and we are at the mercy of our clinic – and it’s our hope they just approach our donor, ask her if she’d like contact on some level, and most importantly allow her to make that decision, not the clinic make that decision for her.
So what’s my point to all of this?  Make sure you have made up your mind in regard to donor contact and make a plan.  If you aren’t sure what you want, at least give yourself options.  Sign up with the Donor Sibling Registry.  Have your donor sign up with the donor sibling registry.  That way you both can have contact on your time table, and at your comfort level.  You won’t have a clinic or agency making those choices for you. And you won’t find yourself “shoulda” “woulda” or “coulda-ing” yourself to death. 
You owe it to yourself and your child – make a plan.

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Tuesday, December 6, 2011

Follow up to the article: Do Egg Donors Lie?

This follow up was written by Wendie Wilson, President of Gift Journeys Egg Donation in response to the original article "Do Egg Donors Lie?"

This is not a question that can be answered with a simple “yes” or “no” – however, the majority of egg donors are extremely open about sharing family history information in intricate detail.  Does this mean some of them are rejected by agencies or intended parents?  Yes.  Are they often disappointed?  Yes.  But it takes a measure of altruism for most donors to go from the first step of exploring what’s involved in the egg donation process to actually signing on to become a donor.  After all, taking multiple injections, making multiple doctors visits, postponing one’s sex life, putting down the wine glass and otherwise committing yourself to several weeks (or in some cases months) of restrictions is enough to scare the majority of the otherwise-motivated donors away. 
What I find as an agency owner is that most donors are not only open, but willing to contact their family to get more detailed information on their medical history.  Not only because they want to be helpful, but also because many of them start to become curious about their own genetics and how it will affect their current and/or future offspring.
There are inevitable cases where a donor may not be able to get more information from certain family members.  For instance, a donor may have an estranged relative that no one in the family speaks to or knows how to reach.  In those cases, it’s understandable that the donor might not be able to complete that portion of her family’s medical history.
There may also be occasions where a donor simply doesn’t know about a medical issue.  We can only expect a donor to share information she is aware of.  The reason a good agency or clinic uses a licensed geneticist to go over a very detailed family medical history counseling session is so that all relevant questions, to the best of the donors knowledge, are answered.  Geneticists understand the right questions to ask to fill in the blanks so intended parents have the most complete set of information possible.
Two other situations where there is a concern that donors might be dishonest are with regards to college transcripts, college attended, degrees held, GPA/ACT/SAT scores, and grade point average.  Most agencies request this information with a disclaimer that they will require a copy of any of the above prior to matching them with any of their intended parents.
Similarly to obtaining transcripts, criminal history is also easily confirmed with a background check.  Again, most agencies will put a disclaimer that they can do a criminal background check on the donor prior to her being chosen. 
There will also be information that is 100% verifiable and always information that we are trusting is accurate.  One of the things I share with all of my intended parents is that, while we can share with them all of the information we obtain to the best of the donors knowledge, verifying those things which can be verified, there is also a leap of faith that goes with this journey.   When someone comes to me who wants a complete and extensive background check, all transcripts from high school through college, all test scores, the donor’s and her immediate family’s medical records and medical screenings above and beyond industry standard – then I suggest that this isn’t the right path for them.  There is no guarantee or absolute no matter how stringent the pre-screening of a donor is.  Sticking to thorough, well thought-out industry standards is the most any agency or clinic can offer any intended parent.
When intended parents take into consideration all of the pieces of information that go into a donor’s profile, what’s most important to remember is that the vast majority of egg donors want to be helpful and honest.  Most donors are emotionally invested in the egg donation process and want to see the cycle result in a pregnancy and a healthy baby.  Relying on your agency to be diligent in verifying what they can, your clinic to test what they are able to test for, your gut to tell you it’s the right donor, and a leap of faith can make this journey one based on trust and hope as opposed to fear of the unknown – those are the acts that will make egg donation the most memorable journey possible.
Bio of Wendie Wilson:
In my early 20’s I donated my eggs to an amazing young woman who was in remission from breast cancer. After seeing the opportunity that was given to her by the technological advancement of reproductive medicine, it occurred to me that this was the single most amazing experience of my life to date.
Ever since, I have committed myself to the field of assisted reproduction still going strong nearly a decade later. I graduated from the University of Washington in 1998 w/ a degree in Speech Communication, spending several years doing competitive speech and debate at the national level. I’ve used my public speaking skills at many assisted reproduction evens and symposiums to speak with intended parents and potential donors about family building opportunities.
With the support of several IVF clinics, doctors and staff members that I had become close to throughout the years, I was encouraged to start my own egg donation agency. From this support, Gifted Journeys was born. I plan to continue spreading the word about Egg Donation and the opportunities that are out there for both recipients and donors. Implementing my belief that all loving people who want a chance to start or grow their family, without judgment or bias, and with equal opportunity and support, should have that option.
To contact Wendie with questions about her agency or her article email here: wendiewilson@giftedjourneys.com

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Sunday, December 4, 2011

Canada Recommends Age-Related Fertility Counseling

This just in from guest blogger Angel La Liberte who runs an amazing website called Flower Power Mom (Empowering women on the journey of motherhood after 40 )

Social trends and advances in reproductive science have led women to have “false optimism” about getting pregnant later in life, according to a new set of guidelines published last month by the Society of Obstetricians and Gynaecologists of Canada (SOGC).

In a review of published literature on women’s age and ability to conceive, the Reproductive Endocrinology and Infertility Committee concluded that many women are fooled into believing “they can delay pregnancy while pursuing their education and careers with the expectation that ART will help them conceive if they have difficulty conceiving later.”

The report highlights statistics showing that the success of ART cycles is significantly impacted by a woman’s age—younger women often conceive more quickly and more cycles are needed for women over 35.

In Canada, the 2007 live birth rate after ART treatments was just under 40% for women under 35 and slightly over 10% for women 40 or older.

“Age-associated infertility appears to be primarily related to ovarian aging and the diminishing ovarian follicle count,” the paper states, and goes on to conclude that the only effective treatment for age-related infertility and declining egg quality is egg donation.

However, in Canada, the 2004 Assisted Human Reproduction Act prohibits the sale of eggs, sperm or surrogacy services—therefore, Canadian women are left to rely on “altruistic” egg donors who may only be compensated for items such as “medications or parking.”

Under the existing regulations many infertile older women are just out of luck or—if they can afford it—have the option to “turn to reproductive tourism and seek treatment in the U.S. or Europe”.
The report recommends that women in their 20’s and 30’s should be counseled about the age-related risk of infertility as part of Canada’s existing primary well-woman healthcare program. Women over 35 should be referred for an infertility work-up after 6 months of trying to conceive.

It does not account for any data on the thousands of women who do conceive naturally or via IVF after 40 (as in my case). Nor does it review the long term implications of more recent scientific improvements in cryogenics in which younger women’s unfertilized eggs can now be harvested during peak reproductive years and successfully frozen (oocyte cryopreservation) for use at a later date.

Notes for this blog:
Society of Obstetricians and Gynaecologists of Canada (SOGC): http://www.sogc.org/about/index_e.asp

“Advanced Reproductive Age and Fertility”: http://www.sogc.org/guidelines/documents/gui269CPG1111E.pdf

Angel La Liberte is the founder of the website Flower Power Mom.com—The Truth About Motherhood After 40 (www.flowerpowermom.com), featuring commentary, real mom stories and expert advice about motherhood after 40. She actively advocates for more supportive attitudes towards women having children in midlife and to raise awareness of the real issues related to later life motherhood.

Angel also hosts “A Child After 40”, an online community to empower all women on the journey of motherhood after 40. She gave birth to her children at 41 and 44 after conceiving naturally. For Angel’s full story, go to: http://flowerpowermom.com/my-story/

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Thursday, December 1, 2011

Do Egg Donors Lie?

Marna Gatlin: (Founder of Parents Via Egg Donation)  " We would hope not but I am sure some of them do -- that's why we rely so heavily upon our clinics and agencies to perform stellar screening."

Here's a great article about that:

http://jezebel.com/5863529/do-egg-donors-lie

On a recent Tuesday evening, I applied to be an egg donor. "Help create a family," read the two-inch-square ad ripped from the Chicago Reader's classifieds. "$7,000 to all healthy women to be anonymous egg donors." I have textbook-good blood pressure. I've been hospitalized just once, for a few hours, when I had a tonsillectomy. And I'm on the low end of the target 21 to 28 age range. I completed a short online questionnaire quite pleased with myself. I'd taken a practical step toward monetary independence, so elusive to my demographic during this recession. A mostly selfish act –- taken to help silence student debt collectors -– could result in selfless consequences. Maybe I could give a couple the family they desire. I have healthy eggs but no upcoming plans to use them –- why waste a good thing?

Around noon the next day, while scrutinizing Old Navy clearance racks with my mom, I received the follow-up phone call. A woman from the agency wanted to know about my ethnic make-up, my birth control method, and my family members who had suffered from depression (one of the boxes I checked off on my medical history). I was very blasé as I listed relatives –- with such a bad job market and so many foreclosures, depression seems de rigueur. That was the end of my foray into egg donation; I was immediately rejected from continuing in the process. My online profile is currently singed with a red bar the color of a teacher's correction pencil; the verdict: "Application Denied."
I accept that I'm not meant to be an egg donor. However, I can't help thinking that in a country with so many anti-depressants prescribed, where so many people live long enough to develop cancer (and survive), some women will lie to donate their eggs for guaranteed compensation. As the founders and directors of egg donation agencies I spoke with confirmed, there is no such thing as a donor with a perfect family history. But the agencies are aware of the times we live in, and their screening processes try to assure that huge ethical consequences don't arise because a woman happens to be financially strapped.

"How can you ensure that a woman honestly fills out her medical questionnaire?" I asked Robin von Halle, president and founder of Alternative Reproductive Resources in Chicago, where I unsuccessfully applied. "Well, we can't," she responded. "It's a matter of having the experience, being able to meet and see them, get a gut feel. It could happen. They forgot to tell us they had two deaf sisters. They don't have medical records –- they're 22, 23. We do what we can." Mary Fusillo, the founder and executive director of The Donor Solution in Houston, seems more confident: "I know when a 23-year-old is trying to pull my leg." At Circle Surrogacy in Boston, licensed social workers meet with prospective donors about their goals and motivations. Rachel Campbell is one of them, and she believes that accidental lies by omission are more frequent than outright deception. "It's very, very uncommon that there's nothing in someone's family history –- it definitely does tip us off, it makes us press forward. My take is that the donor doesn't know or hasn't asked those questions," Campbell says. "The majority of donors really are very honest –- that's why our rejection rates are so high."

In recent years, many of agencies have reported an increase in interest from potential donors, attributed to both the economy, and –- as suggested by Souad Dreyfus, founder and director of Open Arms Consultants in Brandenton, FL –- the improved awareness of egg donation thanks to scientific breakthroughs and media coverage. While there are a lot of inquiries from women looking into donate, the number of women accepted remains very low. At Alternative Reproductive Resources, von Halle says that although she receives up to 40 or 50 inquiries a day, perhaps five percent of those women go on to donate ("You have to be accepted and you also have to follow through" with the estimated three month process, she says.) Part of the reason the rejection rate is so high is that women may not know what factors will make them ineligible to donate their eggs — clinics don't necessarily make the information public. "If the secret is out, then no one will tell the truth on their applications," says Fusillo. Dreyfus has another take: "If you put this list out there, a lot of people will disqualify themselves," as I would have done. But this lack of transparency may cause women to get their hopes up in vain. This is especially troubling given that many women consider egg donation after a life setback –- job loss, unexpected expenses, or a family tragedy might leave them emotionally and fiscally vulnerable. "A lot of young women, when they make that decision, there's no room for rejection," Dreyfus says.

The American Society for Reproductive Medicine (ASRM) has a set of guiding principles for agencies to consider in donor selection. Red flags include a family history of psychiatric disorders or substance abuse, risk factors for HIV and other STIs, ongoing stress, and marital instability. Still, some variance exists among agencies. "The people who are usually screening potential donors do not have a medical background," explains Fusillo, a former fertility nurse. "For depression, I don't automatically reject someone," Fusillo adds, noting that about 20 to 30 percent of her donors have some depression in their families. Fusillo asks each applicant in-depth questions to ascertain if a person is describing chronic depression or "garden variety living in the United States."

"It would be a complete lie to say donors are not motivated by financial motivation," says Campbell. "But for the donor who gets through the process" -– medical screening, psychological screening, genetic testing, being matched with a couple, interfacing with the egg donation agency and the couple's fertility clinic, legal counseling, hormone injections, egg retrieval –- "their motivation is something bigger, they're doing something more meaningful than just trying to make a quick buck." Of the five donors I interviewed for this story, four of them said money was the catalyst but that they did not turn to egg donation as a "last resort" (the fifth donor waived her fee –- she donated her eggs to secure her brother-in-law and his wife a place at the front of the line to get matched with their own donor). Katie, a 27-year-old in Los Angeles, sought out egg donation two years ago because she was uninsured and anticipating high medical bills after slipping, suffering a concussion, and being taken to the hospital. She answered all questions honestly and was forthright about her father's alcoholism, but she didn't mention her recent concussion. "They asked for health records, records of surgery, nothing about accidents," Katie said, admitting that she understands why a woman might be inclined to lie about her medical history. "The possibility of rejection can really mess with your self-worth," she said. "If you were to get denied at a certain point, you'd be like, "‘God, what's wrong with me?' It was interesting to me how much your ego ended up getting involved."

A 27-year-old graduate student in San Diego was as straightforward on her questionnaire as she could be: "I didn't know a complete medical history of my father's side of the family –- we're no longer in contact. With my mom's side, I was fortunate." In Oregon, a now 30-something law student was able to complete four donation cycles while earning her master's, even after telling her agency, "I was anorexic and I had some experimental drug use in college. My sister's bipolar. Our grandfather died of an undiagnosed heart thing in his 30s." She continues, "It was so validating to know that my body worked that way –- to know my body had eating disorders, I thought I did irreversible damage." Jessica, who's 25 and studying abroad in Asia, was a taken aback that her agency didn't ask more questions. Her older sister has a disease that can cause developmental delay and epilepsy; according to a test, her sister's illness is not genetic. "But it was [taken] in the 80s, it was rudimentary. What I thought was really weird was that they didn't ask to see the results."

Souad Dreyfus sees a pattern among the women who contact her at Open Arms Consultants. "They come to us very excited about the idea, but you have to tone them down. ‘Oh I want to become an egg donor. I want to help someone.' Great, that's a good start," she says. First off, the agencies must make sure would-be donors recognize the magnitude of their decision. "This is not like being a sperm donor, or like donating blood. It's not a quick process –- the implications of the process are far-reaching," says Circle Surrogacy's Rachel Campbell. Selected donors seem to understand for the most part, accepting their contract as pact to tell the truth. "The first step in helping is being honest, period," says Dreyfus. "Ninety percent of the time, they get that."

Jenna Marotta writes for Time Out Chicago and New York magazine's website. Her journalism school thesis was called, "Ladies and the Tramp Stamp: The Stigma Behind Lower Back Tattoos," and she once played an extra on Saturday Night Live named Eileen Dover. This is her first story for Jezebel.

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