My reaction to Lauren's essay

I omitted my own comments about Lauren's essay from the post last night because I felt that it was so beautifully written that I did not want to spoil it by plastering my own meanderings at the end.

For some background, Lauren had written this essay to be published by VARTA (the Victorian Assisted Reproductive Treatment Authority) and found out earlier this week that they would not publish it on their website. She still is unclear what the reason was behind not publishing it, but it's likely that it may simply have stated too much "fact" for their own ideological agenda....

Lauren's essay details the view that many donor offspring hold, whether or not they choose to voice it. The fact that by nature most of us are very sensitive, especially to the feelings of our parents, is key to why our voices are few and far between. We feel compelled to not say anything because we fear hurting their feelings with our words and our actions. We delay searching until it is often too late because we do not want them to think that we didn't love them enough.

As she points out so well, infertile couples are so compounded by their own sense of loss of not being able to have children the normal way, that donor conception is seen as a miracle cure and that the donor is simply a piece of genetic material, a sperm or a tiny egg that makes no consequential difference is the baby that will be in their arms nine months later. They forget that their loss is simply being transferred to another human being, a person that in most circumstances one would think would be the LAST person they would want to hurt...their own child. The parents, not acting maliciously, yet still causing the pain, have now created a child that will forever feel a similar sense of loss (not for the loss of children, but the loss of a biological parent). Unfortunately, the child's loss cannot be "cured" with a medical procedure.

I also think Lauren's story of meeting Ben is something that shows just how successful reunions can be. Donors who are fearful of how their families will react to the knowledge of them being donors or how they might react to offspring coming into their lives, it is in most cases unwarranted. Especially when dealing with the actual adult offspring and not the mothers and young children. We are not seeking money or a daddy. We are seeking answers and the sense that we belong and that we are complete. Relationships are something that can take years to cultivate, but do not go into possible reunion thinking that you would never want a relationship with one of your offspring, because you might miss out on something really great. In the same token, don't expect one to be initiated by your offspring, as we are all different and have different comfort levels, wants, and needs. Let the reunion process guide you both.

Lauren's story gives many offspring hope that they too may find their biological fathers and begin to find these answers and heal. It also gives us hope that not all donors are egomaniacs that only wanted beer money and couldn't bear to admit to anyone that they fathered donor conceived children when they were in college/grad school/residency/etc for fear that it might reflect poorly on their reputation.

A must-read for all DC parents, prospective parents, and donors

By: Lauren Burns - Melbourne, Australia (Posted with permission)

My name is Lauren and I am 26 years old. As a `grown up' donor conceived person I feel it is my responsibility to give some perspective about the long term effects of donor conception. We, the children created from assisted reproductive treatment, are the real experts, but we are not often given a forum to express our views. I hope I will give would-be parents and potential donors some important information that they will take time to think over, and my story will be of interest to other donor conceived people, who may want to meet or network with people from a similar background.

The concept of egg and sperm donation, donors procreating with the intention of not assuming any responsibility or feelings towards the person they have helped create, is a curiously artificial construct conjured by the infertility treatment industry. It is the complete opposite of how parents normally feel towards their biological children. In the early days it was useful in helping clinics recruit donors, and for parents who wished to believe donor conception was truly a `cure' to their own infertility, but what happens when the child refuses to accept that their biological parent is not merely a `nice man/woman' who is inconsequential to their lives?

It is crucial to realise that the decision to use a donor to create a family results in life-long consequences for the child who is subsequently born. Every person I know who is donor conceived (about 15) has been affected by it. It is untrue to claim there are no real issues with donor conception, that as long as you tell the child the truth, and tell early, everything will be fine.

The modern advice is telling children early is the best option, and I agree, however it is important to note that children will not have a static response to being donor conceived, it will change throughout their lives. Young children tend to be very accepting of what their parents tell them, and hence often appear unperturbed by their story. It is not until these children gain the power of critical analysis, perhaps in early adulthood, that they may start question what occurred.

I personally know a 30-year-old donor conceived man who has known his status since early childhood. Initially he accepted it, until the birth of his own child when suddenly, as a father, he realised the importance of the biological link, and what the loss of his paternal kin had meant for him (and his daughter). He does not condemn his parents for their decision, but is now completely opposed to the practise of donor conception, and feels it has negatively affected his life.

The psychology of donor conception is complex because it asks the child to differentiate between the `social' and the `biological' aspects of parenthood. Historically there was never this schism, leaving our language unprepared for it. Thus, even the word `parent' is loaded and ambiguous, so we are left with clunky terms such as `biological parent' and `social parent.'

It is vital to think about the importance of the genetic link. Is it relevant or is it completely disposable? How important is it in informing our sense of self (looks, personality, interests) and sense of identity (feeling of belonging, similarities reflected in relatives, being part of a chain)? Parents should not think that if their child expresses longing for knowledge of a biological parent it reflects badly on their parental skills. In my experience my desire to know my genetic identity was actually independent of my relationship with my social parents, because no matter how good a parent they were, it was beyond their control to give me this knowledge.

Donor conceived children are generally smart and sensitive. They want to protect their parents. This often complicates the way they allow themselves to express their feelings about being donor conceived. They are generally especially sensitive about not upsetting the non-biological parent.

There is a lot of literature concerning the feelings of loss and grief felt by adoptees, associated with the denial of a close relationship with their biological parents. This is relevant, because from the perspective of the child, being donor conceived is like being `half-adopted. '

Infertility can mean mourning the loss of somebody who has never existed. However, choosing donor conception to overcome infertility can mean transferring the loss so that it is now the child who grieves, in this case for someone they have also never met, the missing biological parent.

When seeking information and/or counselling about becoming a donor or using assisted reproductive treatment, it is important to consider any biases of the source of information. Infertility treatment is an industry and private clinics are ultimately businesses. Although it is in their interest to adhere to medical guidelines, they also have a financial incentive to minimise or even trivialise adverse effects, in order to recruit egg and sperm donors, as well as attract consumers. As far as I am aware, in Victoria, no infertility treatment clinic has shown interest in tracking the long term welfare of the children created from their services, or (with the exception of the Royal Women's) provided pastoral services to assist offspring dealing with the effects of being donor conceived.

In Victoria anonymous donation is now recognised as harmful to children and has been banned since 1998. However, donor conceived children will still grow up not knowing the identity of their donor during their formative years, and any relationship they pursue after the age of 18 will be retarded by this missing time.

Parents should question how they feel about making the decision, on behalf of their child, that they will be denied a close familiar relationship with one or both biological parents. Adoption was normally deemed the best solution to some crisis that meant the biological parents were unable to care for their child. I feel in this case the deliberateness of the decision to separate kin is significant.

I found out my biological father was a vial of frozen sperm when I was 21. It came as a complete shock. For me, the overwhelming impression of being donor conceived was powerlessness and lack of choice. I thought it was very unfair that the medical establishment had concocted the concept of `anonymous donor' and this deal had been stitched up without my consent. I felt like the system had exploited my vulnerability by assigning my rights the lowest priority. Whenever I expressed the need that was driving me to search for my donor, I was reminded that I must abide by these decisions, made long ago, that I was never involved in.

I brooded over the news for about three years, not talking much, but thinking about it a lot. I found out that in Victoria, people born after 1988 have the right to apply for information about their donor, but because I was born in 1983 I do not qualify. I thought this terribly unfair because my need to know my genetic identity was just as real as somebody born after this arbitrary date. Despite this, I did find my donor, but I had to move heaven and earth to do it.

I reached a turning point when I met Narelle (a donor conceived woman) and eventually met up with members of an organisation called TangledWebs (www.tangledwebs. org.au). (The name comes from a poem by Sir Walter Scott, "O what a tangled web we weave, when first we practice to deceive.") It was a huge relief to talk to people with a similar background to myself, who shared my view that donor conceived people have a basic right to information about their genetic identity.

I went public and had two newspaper articles published in The Age. It was stressful to `blow my cover' and tell my story where I knew it would be read by an unknown number of friends, relatives and acquaintances. However the long-term effects have been very positive because I have freed myself from secrecy and received a lot of encouragement. The experience also taught me the power of personal stories in helping shape public opinion.

I met with key politicians regarding the Assisted Reproductive Treatment (2008) Bill. Sue Pennicuik (Greens) tabled an amendment to allow all donor conceived people to apply for information about their genetic identity, regardless of when they were born. This amendment was only defeated by five votes. (Hansard Legislative Council 4 Dec 2008 pg 50). Unfortunately, at the time we only knew a few donor conceived people who were willing to meet with politicians. Most politicians who voted on this amendment had never actually met and listened to the personal story of somebody who is affected by it.

I changed strategy. My mother remembered the name of her former treating doctor so I sent him a letter outlining my story. To my delight I wasn't ignored. He suggested we meet, and gave me a background of his work in male infertility and donor conception programs spanning 25 years. I was flabbergasted to discover I was the first donor conceived person he had ever met! This highlights the huge disconnection between the medical focus on treating infertility as a `disease' that can be `cured' by prescribing donated eggs/sperm/embryos like medicine, unaware or unconcerned about the lifelong impact this may have on us, the human beings created from these treatments.

I asked if he would be willing to write to my donor on my behalf. He said he would have to think about it and consult with a colleague. A few months passed. I was in a tightly wound state. I felt a familiar feeling of powerlessness as the outcome now rested on the personal ethics of one person. One Thursday in early August 2009 I heard back. He had sent the letter. After this, things moved really quickly. The very next week I received a call from Kate from VARTA with big news. Firstly, I didn't need to ever refer to my biological father as my donor. His name is Ben.

After exchanging letters and talking on the phone we arranged to meet. The day before, I discovered I would be meeting his children, my half-siblings. I was nervous, especially the night before and day of the meeting. As I approached the gate, Ben's son called out "Lauren's here!" in an excited voice and ran to greet me. Immediately I felt more at ease. I said hello to everyone and we sat down to lunch. I had a surreal moment as I looked around and realized I was surrounded by people who looked like me. I realized the clinics were wrong. We are family, at least in some sense of the word.

Finally I understand why people comment that my sister looks Swedish and why I am interested in flying and space. Ben and I share an interest in reading and literature, art, sports, napping, nature and the outdoors. After all my efforts in the media, law, and political lobbying, I was also gratified to discover that my paternal grandfather was a somewhat notorious agitator of the establishment.

I still have three missing half siblings, two boys born in Dec '81 and July '84 and a girl born in Aug '81, all to separate families. I joined the pre-1988 voluntary register, but there were no matches. Have their parents even told them they are donor conceived? If they or their parents are reading this article, I want them to know that they can find me in the voluntary register. I am waiting for them.

Happy Holidays....and a load of other stuff!!

Well, I lied....I promised my beloved [and hopefully still faithful] readers I'd be a better blogger in 2010, and look at it now, it's almost 2 weeks into the second decade of the 21st century and I haven't even had the time to post any holiday greetings!!

So Merry Christmas, Happy Holidays, and Happy New Year!!!

I do hope this post finds you all happy, healthy, and of course sticking to those dreaded resolutions!! Our family has been in quarantine since finals week (mid-December) sharing our wonderful germs with each other, and likely with numerous other unfortunates that have crossed our paths these few weeks. I had a nasty cold before Christmas, was healthy for about 4 days or so, until my sister got me sick (don't worry, she's equal opportunity and infected everyone!!) and I've been fighting a sinus infection since about the 28th! Now that I'm on my 3rd antibiotic (the first didn't work, and the second I turned out to be severely allergic to!!), I'm finally recovering!! Of course now my mom is sick!!! lol

So now that I've provided my pathetic attempt at an alibi for my absence I suppose I'll discuss some things that are going on in the DC community currently.

Well, for one, Julie Shapiro is at it again, attempting to discuss WHY it is wrong for a donor to have 400+ offspring. She acknowledges that it is indeed wrong/unethical/immoral, yet she cannot place WHY she feels this way. For once I actually agree with her, however I still oppose her logic. She sees it as wrong in the instance of potential incest, as well as the likelihood of huge numbers of offspring inheriting a rare genetic defect, yet she cannot see the problem with a child having 400+ siblings and being a commodity.

Please check out her post and respond, and if anyone has any ideas they'd like to share as to WHY it's wrong for a donor to have HUNDREDS of children, comment here!

I think this is a very real societal issue that must be discussed. There is a reason that most persons are repulsed by such an idea, but what is that reason? I'm sure it's really probably different for everyone, depending on your own beliefs and convictions.

In other news.....Cryokid got a link out last month in the Genomics Law Report's article "Reproductive Genetic Screening: More Questions Than Answers"!!

Anonymity itself comes with a cost. One need only spend a little time on the website created by a donor child searching for her father and half-siblings to understand the pain some of these children feel at be deprived of the knowledge of their biological father’s identity. As the daughter of an anonymous donor put it on another such website, “[m]y mother’s need to have a genetic link to her child was valued, while my need to know, love and understand the father with whom I have a genetic link was not.” More than 25,000 such children, their parents, and donors, have registered at the Donor Sibling Registry, trying to connect donor children with half-siblings and fathers—up from fewer than 10,000 two years ago.

While I was not quoted directly, a friend caught the article and the link to my blog. I was happy to see these ideas being discussed in legal circles here in the US. There needs to be a change, and that change is not going to happen through the infertility industry, so the only way we're going to fix this failed system is on Washington.

Well, I just scanned through my last month's worth of email and realized that there really is not much else going on! Well, besides the frigid weather here in the Great Lakes, the deep freeze in the deep south, and earthquakes EVERYWHERE.......and that's for another day, another post, and likely in another field (or maybe I've been watching too many of these 2012 Apocalypse documentaries on my guilty pleasure the History channel!!! LOL)

DONE WITH GRADUATE SCHOOL!!!

So I took my final exam this afternoon and I've put the finishing touches on my practicum binder, and Lindsay is finally done with her masters degree!!! I technically graduate on Saturday, but I'm playing hookey instead of going to commencement!! Actually, my momma and I have our last run of the year as elves on the Polar Express, and it's the night all our friends and their children are coming (and some kids I babysit for), so I think we have about 1/4 of the our car filled with "our people" so it's gonna be a BLAST!! I will be sure to post pics soon!

I promise I will get back to blogging more regularly in 2010. I know I've been chaotic the past few months on and off blogging, but it's tough working 4 different jobs AND school!!

My sisters are home on Friday from college so it'll be our full house again. My one little sister auditioned and won an internship at Disney World as a performing character (either Mickey, Minnie, or Donald - based on her height), so we're all so excited and proud of her!! And of course we're planning a vacation to DW in March which I'm PSYCHED about!!

Well, I'm off to bed for the evening. I had a bad cold this past weekend and I'm still recovering slowly. I feel alive again, but still not back to where I want to be, especially during the holiday season!

Return defective donor children. Money-back guarantee!

From Shawn Vandor's blog today:

In April, 2009, a New York Federal judge ruled that sperm banks can be sued under product liability laws for failing to detect that a sperm donor has a genetic defect. The case clears the way for a 13 year-old retarded girl from PA. to sue New York-based IDANT[1] using sperm with a mutation known as “Fragile X”[2] which caused her to be born mentally retarded.

So, if human sperm is officially a product, what does that make the child born via donor insemination? In the future, will parents be able to return their children to the cryo bank if the child does not meet the parent’s specifications, you know, if the child’s not blonde enough or not good enough on the violin? When is that going to start happening?

In the absence of any significant federal or state regulation of the Cryo banking industry the threat of lawsuit is a very good thing. But, consider this: this isn’t exactly like a consumer being sold a faulty product, who is somehow injures and then seeks a claim; this is the faulty product itself suing the company that made it (in this case, a her). I don’t think this has happened before. Ever. Imagine a single Toyota Prius suing Toyota for assembling its breaks incorrectly!

[1] Owned by the DAXOR CORPORATION. You’ve really got to see their website: http://www.idant.com/ All it needs is some ‘80s David Cronenberg-esque analogue synthesizer and we’re all set. No but seriously. Who would by human semen from a company called IDANT who proudly proclaims: owned by the DAXOR CORPORATION? Also, my life might be at risk for writing this footnote.

[2] No, I’m not making this up.

You know, this really cuts to the heart of the issue of being commodified human beings. Where will the line be drawn?? In our society we already do not place value on human life (even that of our own children). How many women abort their children because of finding a genetic defect? Shawn takes this one step further, stating that if a parent can sue a sperm bank for defective products, and the law has essentially put us in the same category as plasma TVs, what's to stop a parent from sending their newborn (or naughty toddler, or uncoordinated child, or rebellious teen -- even one that has brown hair and green eyes instead of blonde and blue, or is not tall enough!!) back to the sperm bank, stating that it was not the product they asked for. If they were told that their donor was a medical student with a 1500 SAT, and their child is flunking middle school, they can say their sperm was defective.

Now, let me point out, there is a difference between donors unconsciously passing along defective traits to their offspring and parents saying their child is defective.

In the court case above, the child has Fragile X syndrome, a hereditary condition (X-linked dominant, however in females it can be partially dominant) where a region of the X chromosome is mutated. The incidence of Fragile X syndrome is statistically higher in males because they only have 1 X chromosome, and thus if their X chromosome is mutated they do not have another one to take on the duties. Females have 2, so when one is mutated the other may be able to function alone. Thus, some females with Fragile X appear normal, while others display symptoms, depending on which X chromosome was inactivated in the cells.

Thus, if the mother of this little girl is not a carrier of Fragile X, then it must have come from the donor. This is a condition that he will pass along to EVERY ONE of his female offspring (but none of the male offspring). Because of this, I think that something needs to be done to stop this from happening. If it takes a lawsuit to make these banks realize that they need to be doing more genetic screening on these donors (as most males with Fragile X disorder are display some of the symptoms - because they only have one X chromosome).

I think that this lawsuit should be less about it being a defective product, because that leads us to a slippery slope of what we're considering the children created through these procedures, and more about the genetic testing of donors. It should be the sperm bank's responsibility to test their donors like they do for STDs, so that nothing harmful is passed on to the offspring. And banks should immediately take a donor's samples off their shelves and remove him from donating, the second they hear word of a possible genetic condition being passed along.

This is the least these banks can do for all they do to harm the offspring. Take responsibility, don't try to hide from the fact it happened, or make lame-ass excuses as to why it may have happened or why this donor slipped through the cracks.

When NY state makes a law that puts donor conceived persons as products, there is no chance of any reform to be made. The government should be trying to de-commoditize us, not make us mere "products" that are under liability scrutiny.

I can picture the future of donor conception.....parents threatening their children that they'll send them back to the bank if they misbehave. This sounds eerily familiar to adoption where adoptive parents can un-adopt a child (also reminds me of that movie Problem Child!!). Is this seriously what our world is coming to?!?!

Happy Thanksgiving...oh yeah, and be grateful to have been born

On this day almost every American family gathers together to eat roast turkey, mashed potatoes, stuffing, cranberry jell-0, and of course pumpkin pie. It is also a time that most families spend reflecting on their lives and all that is good.

Well, my extended family does the former, but very rarely do we actually make it to the latter. There were close to 20 of us at dinner this year, always held at my cousins' house about an hour away. There's never a holiday that goes by in my family without some sort of argument or crisis that involves some sort of yelling or taking sides. This year it was comments by a non-family member about our President which raised many eyebrows and sent a few of our more conservative relations out of the dining room in a pissed off flurry. Well, that comment and the fact that she unwillingly called 4 different people fat, and told several others they needed to get married! All the "adults" -- basically my parents, aunt, uncle, and my mothers cousins -- then argued about who held the Christmas get-together (a supposed monthly dinner outing for the so-called 'adults') last year and who should holding it this year. Apparently it's now going to be the day after Christmas at my parents' house........that took all of 45 minutes of intense arguing to decide.

Oh the joys of family.....

So anyways, on to more important discussions here.

As I mentioned, my family kind of misses the entire point of Thanksgiving. We spent more time gossiping about other family members and arguing.

So maybe I come by the fact that I'm un-grateful for being born honestly.....or maybe not.

Being grateful for our lives is something that EVERY donor-conceived child is indoctrinated with from day one.

• We are told that our parents' medical or social infertility is a terrible thing and that they wanted us so much that they used a special person to help have us!

• We are told that we should not need our biological parent and that loves makes a family! Despite the fact that our parent(s) chose donor conception over adoption so they could have at least a partially genetically-related child, we are told that genetics are not important and that it's the person that changes our diapers that is the real parent.

• We are made to feel as though we hold the weight of our parents' infertility pain, and that that pain is far superior to any pain that we could possibly ever have, and thus we must be happy with our perfect lives.

• We are informed of the immense costs involved in IVF and ART and that we were very expensive children to conceive and thus must be more loved and more special than any other child.

• We are made to feel excessive guilt if we even THINK that we would want to know our biological parent.

• We are taught to love our social parents so much that we could not even think of possibly hurting them to find our biological family.

This only cuts to the surface of all that donor-conceived children are put through in their lives to be made to be grateful to have been born. But you know what, I'm just going to say it now because it needs to be said, loud and clear.

If I had to choose between being conceived with half of my identity and half of my kinship deliberately denied from me for eternity....or never being born? I'd choose never being born.

Now, before you go call the suicide hotline on me, let me explain. First off, if I was never born I would never know that I was never born and thus there is no loss involved. There would be no one to grieve my non-existence because they would not know that I did not exist. This is not a terrible thing, despite what many people may think. However, since I am born and I am a 24 year old woman, I HAVE A LOSS, and that loss is my biological father. We were not adoptees, where supposedly they were rescued from an abortion or being thrown in a trash can, and are subsequently told to be grateful to be alive. We were created to carry a loss. A loss that no human being should have to endure.

If a child is born and their father has passed away sometime between conception and birth, we as a society sees the injustice and the unfair life dealings for that child and feel sympathy for that child's loss. While this is indeed a loss for that child, he or she has dad's extended family in their life, pictures and stories and memories. As donor-conceived children, we are not given that luxury. We are seen as a cure for infertility and nothing more. We are seen as "miracle children" that are so loved and wanted that nothing else should matter. No one feels sorry that we are not able to ever know our biological father, because "he just jacked off in a cup for money" and "he could be a murder...or worse, a communist", and "he signed a contract and his privacy is more important".

Well, you know what??? I'm sick and tired of being grateful - of being just "happy to be alive" - of being so wanted that nothing else is important!! So I'm ungrateful.

I'm ungrateful and I wish I was never born to be denied the right to know my biological father.