Parent: A Noun and a Verb

Guest Blog: by Former Egg Donor Marilyn Drake

 

Parent is a noun- biological mother or father, which is what a donor literally is.
Parent is also a verb- the act of caring for a child, taking responsibility, raising them.
One doesn’t change or undermine the other.

There is no need to feel threatened by the truth. If your child is donor conceived, it is your child’s life and truth. Show pride in accepting it, because they learn from you, and you want them to grow up happy and self-accepting. If you fear or feel threatened by that part of your child, they are more likely to grow to resent you for not accepting the other half of who they are, or feel angry at themselves and the part of them they feel they need to deny.

I won’t claim that either of us is perfect or that the relationship is. However, I think that [my egg donor recipient] and I have that perfect relationship regarding the children we have together. I am their noun, she is their verb. She accepts that they needed me to have children, and I accept that I helped them have children. I don’t feel threatened by her raising them, nor does she feel threatened by my presence in their creation, or in their lives. We support each other, care about each other, and have love for each other. Together, we created amazing children, who have taken on the great traits inherited from their father (both noun and verb) and I (noun,) along with all of her wonderful parenting (verb) to make these children their best, and they are thriving in school and life.

Being the biological parent doesn’t mean that her children belong to me. They are not possessions to own. If any parent thinks they own their children or they belong to them, just wait until they grow up, you’ll realize you don’t. It means they turn to me to get questions about the half of them they got from me, like being able to roll their tongues. Yes, they seriously asked me if they got that from me, as their mom and dad can’t.

What it does mean is that I think about, care about, and love them. They are pieces of myself that I was blessed to help another family create life with, so they can know the joys, love, heartaches, and rewards of being parents too. I have at least 4 more families out there that I don’t know. I remain their biological mother, even I don’t know who they are or how they are. I hope and pray they are thriving as well. I think about, care, and love them, even though I do not know them. One day if they find me, I hope they realize that me being their noun doesn’t change their verb’s position in their lives. I don’t replace anyone. It is ok to have extra.

do·nor

a person who provides blood for transfusion, semen for insemination, or an organ or tissue for transplantation.
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Connecting on the DSR vs. on DNA Websites

Ryan and I started the Donor Sibling Registry (DSR) in 2000, via Yahoo Groups, one of the the earliest social media-type applications.  Our group was based on the idea that Ryan’s donor had signed up for anonymity (and Ryan respected that fact), but he was curious to know if his donor might have had a change of heart about being known. Also, he wondered if he had any half siblings out there: people with whom he shared half of his genetics. The concept of mutual consent contact was very important to us both, as we didn’t want to “out” anyone, we only wanted to create a platform where mutually desired contact could take place. As a young child (then 10), Ryan had been thinking about half siblings and his biological father in this way, “what if they want to know me, and I want to know them, how will we ever have the opportunity to find each other?”

Fast forward to 2004: When a DNA testing company contacted us, asking if Ryan would like to test his DNA to possibly find out more about his ancestry and his paternal countries of origin, we jumped at the opportunity. We both felt that any information that a DNA test could provide about Ryan’s ancestry would be welcomed. Neither of us, nor the DNA company ever entertained the idea that Ryan’s biological father might be found using this new genetic testing technology.

At first, the DNA test did provide some interesting information about where Ryan’s paternal ancestors hailed from. He thought that was cool, and we both thought that was the end of it. Nine months later though we were shocked to receive notification that Ryan had matched with two very distant relatives. It was with the last name of these two Y-DNA connections, a public records search, and Google, that in a very short period of time lead us to Ryan’s biological father.

The irony didn’t escape us—here were the two founders of a mutual consent contact organization for connecting donor-conceived people with their first or second-degree genetic relatives, and now we had, almost by accident, tracked down my son’s biological father—a guy who had not signed up for any type of contact. Ryan had become the first donor-conceived person to locate his donor via DNA testing. He might have been the first, but definitely not the last, as he opened a door that never could be closed again.

Since then, we’ve been sending DSR members to DNA testing both to confirm relatedness with possible relatives found on the DSR and to supplement their search for their biological parents. This is particularly common for those without the luxury of a donor number, many of whom are born between the 1940’s and 1980’s.

More recently, adult donor-conceived people, many of whom had no idea of this fact until they swabbed their own cheeks, are coming from the other way, from the DNA testing sites to the DSR to make their connections after finding out the very surprising news that one of the parents who raised them wasn’t in fact biologically related to them. Many who were unaware (including several half siblings of Ryan’s) are doing DNA testing for a variety of reasons: family tree curiosity, it was a gift, for medical reasons, a passion for genealogy, they suspect there’s a secret, looking for someone else in particular, etc. The level of shock, disbelief, surprise, curiosity, and confusion vary among these people who most often had no idea about their donor conception.

It’s now very common for DNA testing to provide first and second-degree genetic relatives and these results are exposing long held family secrets. These secrets don’t just affect one person, but rather, can affect entire families. Parents who thought they’d keep the secret of using a donor are now being confronted by children who wonder why their parents were not truthful with them. For Ryan’s half siblings who do not yet know the methodology 0f their conception (there are a few), we feel that it’s only a matter of time until they too make their way into the CCB 1058 half sibling family which is now at eleven.

Establishing new friendships and familial relationships via DNA, with people who aren’t necessarily prepared for this type of new-relative connection, can be a very different experience than making deliberate mutual consent contact on the DSR. For the most part, people who connect via the DSR are delighted to connect with each other.  On the other hand, connecting via DNA can be so shocking, that some are just not prepared to even reply to messages from their new-found relatives on the DNA websites. For those waiting for a reply that never comes, this can be difficult.

People add postings on the DSR for a variety of reasons and the level of desired contact can certainly vary. We have thousands of members longing to establish relationships with their own or their child’s half siblings, offspring hoping to find their biological parents, and donors hoping to connect with their biological children. Some members only want to connect to share and update medical information.  And many land somewhere in between -uncertain as to what type of contact and relationships they’re looking to establish, but are willing to explore the possibilities.

While the level of desired contact might vary, by searching on the DSR you can be assured that any results you’re provided come with the certainty and confirmation that the person you’re connecting with will not be shocked by the news that they are donor conceived, and chances are, they’ll most likely be thrilled to have made the connection.

Here is a related article from this week’s Philly Inquirer:

When a DNA test unites family members, not everyone is happy about it.

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Donor Sibling Registry Research Tree Booklet

While we feel that it’s extremely important that all stakeholders are properly educated before (and after) donation/pregnancy, we realize that not everyone is interested in reading a stack of academic articles on the subject.

Additionally, those who provide counseling services to the stakeholders and those thinking critically about the issues in regards to setting policy might also have fallen behind on the latest research.

This is why we put together the Donor Sibling Registry’s new Research Tree booklet– a summary of some of our peer-reviewed/published research papers. It’s the “Cliff Notes”, if you will, of research, studying all those in the donor family: the parents (biological and non-biological) of egg and sperm donor children, the egg and sperm donors, the offspring, and even the parents of people who have donated, the “donor grandparents”.

The link to the Research Tree is also on our Research Page and Printed Material Page of the DSR.  We’re having a few hundred booklets printed too, so you can email me at wendy@donorsiblingregistry.com if you’d like printed copies.

Enjoy!

Wendy

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Parent-On-A-Chain Jewelry: A heated discussion

There has been a recent (heated) conversation on the Donor Sibling Registry Facebook group page about the Parent-On-A-Chain Jewelry.

When POAC founder Jennifer Moore first introduced the idea to me last summer, I liked it. I then ran the idea by our board  (a former sperm donor, another mother of a donor child (LGBT), a donor-conceived person, and a mental health professional) at our annual meeting last summer and they all thought it was a great idea too.  They all agreed that the DSR could get behind it, especially since some of the profit would be donated to the DSR. I also ran it by a lot of other people (all stakeholders) in the donor community and received only positive feedback.

The DSR was created to facilitate and celebrate the connection between half siblings. Many people proudly wear these necklaces to do just that: celebrate the connection that they have with their half siblings. Some donor-conceived people have felt the need to get their donor number tattooed onto their skin – a sperm donor number onto a foot, an egg donor number onto the back of a neck. I imagine that for most donor-conceived people, they’d prefer to wear a necklace, rather than get a tattoo.

Some donor offspring have recently expressed their dislike of the necklaces, and I do understand why. But I also acknowledge those who might wear the necklace instead of a tattoo to acknowledge the importance of the missing/unknown one half of their ancestry, genetics and first-degree genetic relatives. Or they might wear the necklace to celebrate the bond that they have with their half siblings.

We’ve conducted quite a bit of research on donor-conceived people over the years, from many different surveys, some with as many participants coming from outside as inside the DSR. There is always a huge variance in how donor-conceived people view their conception – some are very angry, some are just fine, most are somewhere in-between, and many vacillate at different times in their lives.

For parents whose children don’t struggle or who are not angry, it can be hard to understand why some donor-conceived people are so angry. So, in regards to the necklace, some offspring see it as a celebration of the connecting they’ve had with half siblings. Some see it as an important statement about their profound connection to their unknown biological parent, and that number is the only solid representation of that missing person that they have. Some see it as both. And some offspring don’t like the necklace, because they feel that it’s somehow celebrating the act of deliberately cutting one off from one’s genetic origins.

Just a note to say my son loved the necklace. He wears it all the time. I told him that the donor is part of him, just as I am. He cried! He proudly refers to him by number in a way he didn’t before. In some ways it’s like he now carries his father with him.” – Mom to a donor-conceived child

“[it’s] a reminder that half of us is nothing but some arbitrary number.”  – A donor-conceived adult

“…my daughter’s reaction to it surprised me. She held that necklace in her little hand as if it were a link to her donor. She liked it.” – Mom to a donor-conceived child

” I think the necklaces are really sweet.” – A donor-conceived adult

“This necklace is in poor taste.” – A donor-conceived adult

“I would get the necklace with my number and my sister’s name that I found through DSR. I would also get one for my sister as a gift, with our number and my name. We have given each other presents with our donor number on them ever since we found each other.” – A donor-conceived adult

So, I get it. For those who see the necklace as a negative, don’t purchase one.  For those who see the necklace as a positive, we invite you to check out the options.

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Guest Blog: The future donor child as an “empty chair”

Empty Chair

by Harriette Rovner Ferguson, LCSW

I am a psychotherapist specializing in working with individuals and couples who are experiencing infertility. I have been doing this work for well over 20 years and lately have concentrated on people using third party reproduction to create their families. I began to notice that it was hard for couples to imagine themselves as parents. How could they? After sometimes years of failed treatments, the thought that a procedure might bring them a successful pregnancy was just too hard to conjure up in their minds and so when they came into my office, talking about their future child was too far a stretch.

The problem is that I need to talk to them about their family building option and their belief of how their child’s conception would impact him/her later in their lives. My job is open up a discussion about their feelings about disclosure (who to tell, who not to tell), family support, their individual feelings about being biologically or non biologically linked to their child and what they imagined this relationship would look like.

I began to wonder how I could help them believe that one day they might hold a baby in their arms. A baby who would call them Mommy and or Daddy. So when they sat down in my office and I told them that during our consultation (as mandated by their physician), they were not the most important person in the room, but their future child is. Everything that we will talk about will revolve around what is in the best interest of their child and nine times out of ten, they looked at me like I had three heads.

I am trained as a Gestalt therapist. We use an empty chair technique to help our clients focus on the different parts of themselves. The client places an imaginary inner child or the people in their lives that have hurt them onto the empty chair, which allows them to open up about their feelings. As they speak to this projected person, they can get in touch with the feelings and begin to name them, recognize them and start releasing the negativity from their lives.

Hmmm! I looked around my office and realized that I could use an empty chair with the people who are planning to have a child. I could ask them to project that baby/child/teen onto the chair (that has a few teddy bears on it!!) and when I questioned them about how they will thought they might feel telling their child they were conceived through a donor, surrogate, gestational carrier, they could imagine it. If they sit for a minute and focus on the chair, they are able to let their heart and their minds project how they might feel.

So when I ask them what do you think about talking to your child about his/her biological origins, they take the question in and ponder. Before I used the chair, most couples’ immediate response would be that they would not ever tell or they would wait to tell or they were undecided and were afraid to even think about it. But with the chair present and my coaxing them to think deeply about what would be in the best interest of their child, they almost always decide that if they have their child’s best interest in mind and heart and they want to be honest parents that their children can trust, they decide just like the research teaches us. The earlier the story begins, the easier it evolves and the family moves on to create a secure and stable environment where children can grow and flourish, no matter how they came to be.

So, thank you empty chair for bringing this imaginary longed for child into the room so these future parents can make a decision that will benefit all of the members of this beautifully conceived family.

 

Harriette Rovner Ferguson, LCSW has been specializing in providing psychotherapy to individuals and couples experiencing infertility for the past twenty years. She is a mental health consultant to infertility clinics on Long Island, New York City and Pennsylvania. She conducts interviews and evaluations for infertility patients entering an IVF cycle or those contemplating using a third-party to create their families.

 

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Dibling-Dumpling

Dibling

Some of you love the word, and some of you detest it, so here’s my opinion about using accurate terminology, along with a few weigh-ins from several parents, a donor, and a few donor-conceived people.

A hot topic of discussion on the Donor Sibling Registry has always been terminology. We even devoted an entire section to terminology  in our book, Finding Our Families. Most of the discussions have revolved around the terms used for the gamete seller: eg., donor, father, biological mother, donor dad, sperm seller, mother, genetic parent, bio dad, genetic mother, biological father, etc.  But there hasn’t been too much discussion about others born from the same “donor”… until now.

The feedback that I have received indicates that while some parents of young children like the term, many donor-conceived people do not like cutesy words like “dibling” to describe themselves, or their half sibling relationships.

“I think the problem with the term dibling, and its continued use is that it marginalizes DC individuals and underscores the way many of us feel society views us. We are whole people, not dumplings or diblings- we have real feelings and desire acknowledgement as being biologically connected to the families to which we are related.”

Explaining to people that you are a donor-conceived person, or that you have half siblings, is factual, and accurate. Using a word like dibling only calls for explanation, and labels the person as something “different”. I have found that even for young children, accurate terminology can be very important. Children are not diblings, they are just children. They are donor-conceived people, and most of them have half siblings, other people born from gametes (sperm or eggs) from the same genetic parent. They have half brothers and half sisters, not  “diblings”.

Adopted people who connect with their half siblings don’t call them adoptiblings. They refer to them as siblings or half siblings, even though they did’t grow up in the same home.

Personally, every time I see the word I want to say dumpling.

One mom gives some insight:

“I think it is also done to make things easier for the non bio parent. I know for my wife there are insecurities about that, like being afraid that recognizing those relationships as real will make hers less valid. Luckily, though, my wife works through those issues privately with me and does not let it trickle down to our daughter. She prioritizes our daughter’s right to her own narrative and placing her own importance on relationships. Our feelings don’t matter in this. This is our daughter’s life. When we chose to conceive her this way, we agreed to respect her right to define her family in whatever way feels right to her, and to support her in that any way we could.”

And from another mom who uses the term :

“…without that word [dibling] my daughter would have had to wait years to meet her brothers & sisters. The D word provided a term that left all parties comfortable.”

But it wasn’t “all parties”. It was parents who might not have been comfortable connecting if not somehow lessening or defining the relationship as somehow “different” by calling the half siblings something other than what they actually were.

A few more moms chime in:

 “Using made up words to describe a relationship diminishes the situation. With my daughter I have always used words that parallel those she hears to describe all other family relationships she knows. It’s hard enough to feel different without having words like “dibling” to fictionalize the relationship.”

“My son refers to his two half sisters as “my sisters”, he doesn’t like dibling or half sister or any other term for it. He has bonded with them and has a good relationship with them. He refers to the donor, whom he has met in person a few times as, “My Dad,” I always referred to him as “the guy who donated for us to have you.” Kids choose their own names for their relationships and they should be able to call them what ever they are comfortable.

“For those of us who feel strongly about the human rights of DC people to frame their genetic relationships in life and public debate around words like “dibling”, I found it incredibly helpful to reach out to my online civil rights communities and share with them the “otherness” that’s created around DC folks. These are groups that include a large number of POC [people of color], adoptive parents with POC children, LGBTQ parents. The idea of DC extended family is new to many of them, but they understood without explanation that it’s the fundamental right of the person in the group, in this case the DC, to name their relationships. Many also expressed that the word ‘dibling’ requires much more information than half-siblings or siblings as it’s not universally used to describe familial relationships.”

This mom likes the word:

“When I explained donor siblings – half siblings thing to my (then) 5 yo daughter, she came up with diblings and loves it. She thinks it makes her special and her relationship with her half siblings special. i think that it was great as she was jealous of her friends at school who had a dad as she did not and this gave her something special to hold onto. Our group from our donor (about 26 and counting) all use the term on our Facebook page. That said, all the kids are under 10 (I think) so maybe that is a factor. “

 A few more adult donor-conceived people weigh in with varying opinions on terminology:

“As a donor conceived person, I reiterate that I am not offended by the term “dibling” I just think its stupid. It’s just an abbreviation for donor sibling and I honestly cannot stand any more acronyms and abbreviations. To the parents and donors in this group, you can use whatever words you want to describe your child’s or offspring’s half-siblings from the same donor. But I just feel this word isn’t going to catch on.”

“Diblings is a stupid f-n word. Sorry, I’m more blunt than you.”

“I’m DC and while I haven’t found any half-siblings that aren’t directly connected to my donor, dibling doesn’t sound that dumb. I don’t know if I’d use it, but I don’t see anything wrong with other people using it. DC siblings ARE different. There’s nothing wrong with being different, it’s just who we are.”

 “Had one sister, now I have two. Dibling is an awful word.”

“While I don’t think that the term is used maliciously, as a DC person people rarely take my plight or struggles seriously. Often times, if the subject is broached, I am told that I should be grateful that my mother wanted me so much that she sought out sperm donation. I don’t know if any other DC persons agree with my feelings, but to me the term dibling perpetuates the frivolous viewpoint many outsiders have regarding those who are donor conceived. We are marginalized and treated like a punch line in pop culture (the movie Delivery Man, Joey from Friends donating, etc) so this terminology contributes to the continuation of making “light” of our circumstances.”

It does not bother me when other people use it. I would not tell you what to do in your own life. Besides, it’s just a word.  However, my opinion of the word is that it is confusing and that it implies that the relationship between donor siblings is less than that of siblings raised together. Some might say that this is true. But even if it is true, the negativity of the implication makes it derogatory and offensive to some people.”

 “We don’t need a “special” term. Special terms are often created to label differences. DC people already feel like they are different and are often viewed as a less authentic family member by those to whom they connect through DNA. At the worst, using the term perpetuates that belief that those who are donor conceived are not “real” members of a family (there’s enough evidence of that on this site based on the rejections DC individuals often experience when attempting to reach out to their biological family members). At the least it is a superfluous name that unnecessarily gives credence to those who believe that we are different and that we should be proud of our differences. I would never tell a person of color or of a specific ethnic group that they should embrace terminology that (though not malicious or insulting) minimises or classifies their identity. This situation is no different. Can you imagine if there was a word that was pushed upon another marginalised group and when they complained they were told that the word makes them special and they should embrace it? I don’t know how else to explain the problems DC individuals have with the word dibling.”

 “A lot of very passionate views about this term. It seems it’s almost hurtful to some. As a 44 y/o DC person, I would never call my sister, my dibling. I think it sounds silly or stupid. I call my sister either my sister or my half-sister. It doesn’t need to be complicated.”

And finally, from an egg donor (whose children are half siblings to the children created from her donated eggs), after listening to parents of young children defend the word:

Instead of jumping to defend a term that doesn’t in any way describe yourself, listen to the people who your label is about, and how they do not like it. Realize that your own child might also grow up to hate the term that says her biological half siblings are less than enough to be called what they actually are.  Years ago parents were told to not tell their children they were donor conceived. Then as those children were finding out as they were older and started speaking out about how it hurt them so much, it changed the way many parents are now parenting DC children. They are telling them from young ages, the truth of their conception, because they learned it was best for their child to honor their truth. Some parents still believe in keeping that a secret, even though research shows it isn’t the best way.
You and other DC parents have the benefit to learn from DC adults, when they tell you that your cute term is not a good one. It offends and hurts them. All I am saying is learn from them so your DC doesn’t look back as an adult and ask you why you ignored sound advice, research that shows it is best to correctly identify relationships. Like other DC parents, you can learn a better way to use correct terms and be honest. Dibling is not a correct term. It is slang for half sibling, who isn’t really your sister/brother. While you now think it is cute, you are being told it isn’t, but rather it is harmful. So please by all means do what you want for your family, because a stranger on the internet doesn’t live with you. Your DC children do, and they are the ones affected by your choices.”

As we continue to redefine family on the Donor Sibling Registry, we all need to be very aware that the words we choose to use to describe our families say a lot about how we think and what we value. We will probably never all agree on donor family terms that make everyone happy.  But in the meantime we can be acutely aware about how the terms we use affect donor-conceived people, many of whom already struggle with the fact that they have been deliberately cut off from half of their first degree relatives, ancestry, and medical histories.

Our language will certainly continue to evolve.  Parents (and others) owe donor-conceived people the respect of using terms that do not make them or their familial relationships any “less than” people and relationships in more traditional families.

 

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Donor Conception: Old vs. New Thinking

 

Old thinking: Infertility is something to be ashamed of.

New thinking: Coming to terms with infertility is a process. With proper education and counseling, healing can begin so that the shame of infertility isn’t passed along to the child as the shame of being donor conceived.

Old thinking: Keep the secret. Don’t tell anyone that you used a donor, especially your child.

New thinking: Secrecy implies shame. Openness and honesty are the best choices for all families and your child has the right to know about how they were conceived. Donor children do not love their non-bio mom or dad any less, so this is something that shouldn’t be feared.

Old thinking: Wait until the child is “old enough” to understand donor conception before telling them they are donor conceived.

New thinking: Research shows that starting the conversation long before a child can fully understand is best. That way, the information is incorporated into a child’s identity, and there is never any “telling” event.

Old thinking: Wait until a child is “old enough” or until they ask before telling them about half siblings.

New thinking: We don’t wait to tell children about any other relatives, so why wait to tell them about half-siblings? Why not give a child the opportunity to grow up knowing their half brothers and sisters? Why risk a child asking later on, “You mean I could have grown up knowing my half siblings? Why didn’t you allow that?”

Old thinking: If your donor-conceived child finds out the truth, ask them to keep the secret.

New thinking: It is not healthy or fair to ask your child to keep this information as a secret. Secrecy implies shame. Being donor conceived is a part of their identity and needs to be acknowledged and embraced. If the child is struggling with this new information, it’s a parent’s responsibility to walk with them and support them. Parents: you can apologize for keeping the secret. This is no longer about you.

Old thinking: Donors can and should remain anonymous, for 18 years (“open” donors) or forever (anonymous” donors).

New thinking: DNA= Donors Not Anonymous. With DNA (and the Internet, social media, public records, etc.) donor anonymity ceases to exist. Many egg clinics/agencies are now writing the Donor Sibling Registry into their contracts so that contact between parents and donors is made right from pregnancy or birth. Why don’t sperm banks do the same?

Old thinking: Donor conceived people should be kept from their biological parents for at least 18 years, as with open” or “willing-to-be-known” donors.

 New thinking: It can be extremely important for both medical and psychosocial reasons for donor offspring to connect with their biological parents, long before the age of 18. Parents: the choices that you make early on will affect your child for decades to come.

Old thinking: If donors are anything but “anonymous” they will have rights and responsibilities for their donor offspring.

New thinking: Donors who donate through clinics and sperm banks have no legal rights or responsibilities.

Old thinking: Donors shouldn’t tell their spouses or children that they were donors.

New thinking: Donors should be telling anyone that they are in a serious relationship with that they have sold their eggs or sperm. Donor’s children should be told that they (might) have (many) half-siblings, as they too might want to connect. Again, secrecy implies shame. Own it and share it. Your family has the right to know.

Old thinking: DNA doesn’t make a family.

New thinking: DNA is certainly not the only way to make a family, but it can and does define family. As with adoption, many donor-conceived people wish to connect with and learn about their ancestry, medical history, and first-degree genetic relatives. There is no need for a parent to minimize the importance of their child’s “other” genetic relatives. For parents, it might be nothing more than a “donated cell”, but to a donor child, it can mean so much more.

 

You can’t really know who you are and where you’re going unless you know where you come from.

-Bruce Springsteen

 

Old thinking: Donors shouldn’t have any obligation to update their medical records.

New thinking: Updating and sharing of medical information is crucial and can even save lives. Parents should know about all medical issues reported by families and donors, both before and after pregnancy.

Old thinking: There is no need for accurate record keeping on the children born from gamete donations.

New thinking: There is a dire need for accurate record keeping so that groups of half siblings of 50, 100, or 200 stop happening. You can’t notify families of reported medical issues if you don’t know who they are.

Old thinking: It is more important to put profit before ethics in the reproductive medicine industry.

New thinking: The needs and rights of the child should be considered first and foremost.

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Choosing a Sperm Bank…What To Know

An open letter to anyone choosing a sperm bank:

Hello Future Parents,

I am so glad that you’re reading this, and that you are doing your due diligence. And I know, this can seem completely overwhelming- hang in there! Honestly, right now there is only one sperm bank that I can recommend, and that is The Sperm Bank of California (TSBC). Maybe it’s because they are a non-profit, they do seem to try a bit harder to keep accurate records and to act in a more responsible and ethical manner. They are not perfect, but do seem to try harder to contact donors when a child turns 18, not just send a generic letter in the mail, as some banks, like California Cryobank have done. Or not responding, or claiming that donors are not really “open” at all, as some banks do. TSBC’s “informed consent” form (on our Which Sperm Bank page) that you’d need to sign, implies that you or your child shouldn’t contact donors or half siblings outside the scope of their mutual consent/age 18 recommendations, but ​​this is unenforceable as anyone can contact anyone, at any time – and,  your child is not signing or agreeing to anything.

We think that 18 is an arbitrary number, only in place to protect the sperm bank’s liabilities. That’s why any family can make contact at any time on the Donor Sibling Registry (DSR). (Children under 18 do need their parent’s permission). There is no psycho-social research that recommends waiting until age 18, and a lot of research and that does show the benefits of connecting early on in a child’s life. If a child could have the opportunity to grow up knowing their first-degree genetic relatives, then why deliberately keep them from him/her?

Many egg clinics and agencies are now writing the DSR into their parent-donor contracts, so anonymous (if wished) contact is made on the DSR right from pregnancy/birth. Messages, photos and medical information can then be shared freely. Parents and donors are empowered to decide exactly what type of communication they are interested in, without the need of a middleman who knows nothing about them or their family, or the needs of their child. Not one sperm bank will do this. Ask your potential sperm bank “why not?”

Some sperm banks “claim” to limit numbers of children, but the truth is…you can’t limit until you actually have accurate records, which none do, as reporting births is voluntary. Some sperm banks have estimated that only 20-40% of women actually report back their births back to the sperm banks. The DSR has many half sibling groups of more than 100. Xytex and Fairfax are the two sperm banks with the most number of very large half sibling groups.

Because of little regulation or oversight, besides the FDA mandated STD testing, and testing for a small handful of other diseases, each bank can say what ever they want, and then do what ever they want. So, some banks, test some donors, for some diseases. You can read all about the medical and genetic issues here on the DSR’s Medical Issues page. 

Sharing medical information with half sibling families and donors on the DSR is oftentimes the only way to know about this type of important medical information. Families should never rely on sperm banks to contact families when medical issues arise, as most often they are unaware, and even when they are made aware, we know that they frequently do not update the families. 

I would definitely steer clear of the big banks such as California Cryobank, Xytex, Fairfax/CLI/Pacific Reproductive Services (PRS), NW Cryobank, the US “Scandinavian” sperm banks like Seattle/European Sperm Bank/Cryos, or New England Cryogenic (NECC).  I used California Cryobank, and could never recommend them, as on many occasions I haven’t found them to be honest.  See the Johnson vs. California Cryobank case (the sperm bank deleted Polycystic Kidney Disease from a donor’s profile), this O magazine Article , and my  Blog entry on the DSR.  At least two sperm banks, Fairfax and NECC have not let their donors know their own donor numbers, trying to actually prohibit the sharing and updating of information by donors with families on the DSR.

 

Read these NY Times articles: One Sperm Donor, 150 Offspring and In Choosing a Sperm Donor, A Roll of the Genetic Dice.  Also, see this (one of many) disturbing article about Xytex.  Read this 2016 NY Times article: Sperm Banks Accused of Losing Samples and Lying About Donors. And there’s also this one regarding an NECC lawsuit involving a child born with Cystic Fibrosis.

Read through the user comments about these and other banks on our Which Sperm Bank  page.  Ask your potential sperm bank the 30 questions we’ve provided on that page. For the most part, these sperm banks seem only responsive to people before they sell their product.

I  hope that you’ll be using an open donor- please read through the 25 published papers on our Research page and the advice that donor conceived people offer on the DSR’s Offspring page to better understand why using an open donor is SO important. The DSR has spent many years researching, listening, and responding to the needs and issues of donor-conceived people, and we know that they do not recommend that prospective parents use anonymous donors. Remember though, that without offering early connections (like the egg clinics/agencies are doing) all sperm donors are essentially anonymous, albeit some only for the first 18 years of a donor conceived person’s life.

Also, I would suggest that after making a short list of possible donors, that you check the DSR to see if any of the families who used those donors are already listed on our site. If so, you could reach out to them to see if there are any medical issues that you should know about. Also, you can see how many families are already posted for that donor.  Sharing and updating medical information on the DSR with other families (and the donor) can be important and even life-saving. Wouldn’t you want to know if the donor you’re thinking of using already has 30, 50 or 200 kids out there and that too many of them had autism, ADHD, or a heart disease?

Please read ALL the articles in my Huffington Post Blog, as they contain a lot of information you won’t find anywhere else, for example: “10 Things your Doctor or Sperm Bank Won’t tell you”. I highly recommend reading Finding Our Families: A First-Of-Its Kind Book for Donor Conceived People and Their Families, as it’s everything I wish I would have known when I was beginning my journey as a parent of a donor conceived child.

We just submitted (July 2017) an FDA Citizen’s Petition with 173 powerful comments, stories and testimonials from parents, donors and donor conceived people that should be read by anyone wishing to learn more about the reproductive medicine industry.

Best wishes and good luck!

~Wendy

 

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Sperm & Egg Donation: Telling is the First Step

In 2000 when my son and I started the Donor Sibling Registry (DSR) (initially as a Yahoo chat discussion group), the predominant conversation was about disclosure. Back then many, mostly straight, parents were invested in keeping the secret, and came from the point of view that as a parent, disclosure was their personal choice to make for their family. They did not like to hear about why not telling (lying) might be harmful to offspring and unhealthy for their family. They didn’t want to hear that secrecy implied shame.

“Secrets are like landmines you know. They can go off at any time, but until they go off you’re sort of treading around them.”- Donor Conceived Person, Barry Stevens

Some felt attacked and offended when offspring or other parents gave reasons as to why lying to their child was not right. They stuck to their guns, even when they heard from offspring who reported feeling like their world had been turned upside down, when they discovered the truth later on in life. These parents insisted that they were not telling their children because it would “hurt the child” to know the truth. They didn’t want to hear that non-disclosure was more about their own (or their partner’s) shame and fear and not at all about what was in the best interests of the child.

Why should a parent’s right to secrecy trump a child’s right to the truth? Healthy relationships are built on foundations of trust and honesty. We expect honesty from our children, shouldn’t they expect the same from us?

This conversation is not a new one. Honesty has long been an accepted practice within adoptive families, while at the same time, sperm banks and egg clinics were (hopefully no longer) advising parents to “keep the secret”. There was never any psychological research to back this up, so we know that the advice had no psychological foundation and no merit. It only served to keep the industry’s dirty secrets secret. It also served to protect the infertile non-bio mom or dad, and it perpetuated the shame of infertility. It created so many parents with shoulders heavy from carrying a deep dark secret for decades. This is why we strongly recommend infertility counseling (before pregnancy) for non-bio moms and dads. It’s important that they work through their own grief about being infertile so as not to pass along that grief, in the form of shame, to their children.

Many of the parents who chose to “keep the secret” left our group. Some have joined the DSR in secret, connecting with other families only to tell them that they have no intention of telling their children. I can’t help but wonder how these families have fared, if/when the secret came out, how the children reacted, and how long they all have before DNA reveals the truth to everyone.

Telling is just the beginning though. Just because a child knows that they were conceived with the help of a donor, doesn’t mean they will have peace with not knowing about one half of their identity, medical background and close relatives. The conversations on the heels of disclosure are extremely important. They should acknowledge, honor, and validate any curiosity that donor offspring have about their unknown first degree genetic relatives. They should support any desire that a donor offspring has to search for, and to connect with these relatives. The conversations should be ongoing and affirming. Telling is only the first step to creating healthy and happy donor families.

If you need help in supporting your donor conceived child, including deciding when and how to tell your child, read through our DSR Counseling Page. For more in depth advice (from all of the stakeholders: offspring, parents and donors), read Finding Our Families: A First-of-Its-Kind Book For Donor Conceived People and Their Families.

Some other issues addressed on our Counseling Page:

How to move forward in connecting with a donor or a half-sibling family (or many families).

Non-biological parents feeling uncomfortable about their children reaching out to biological relatives.

How to cope when you have a burning desire to know your genetic/ancestral history, both with and without parental support.

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Half Siblings from Sperm and Egg Donation

Three half sisters meet

Family can be formed and defined in so many different ways, but biology has always been the most common family bond. If biology didn’t matter, we’d give birth to our babies, and then just pick any baby from the hospital nursery to take home. That doesn’t happen! In most cases, parents want to take home and raise the child that they have a genetic connection with.

Having a biological connection to a child (to one parent) matters to parents who use sperm and egg donors*. So, if parents value this genetic connection on one side of our child’s family tree, shouldn’t they also recognize and value it’s importance on the other side? All too often I hear parents negate or minimize the importance of their child connecting with their unknown biological parent (the donor) and their half siblings (people conceived from the same donor). Some refer to the donor’s contribution as merely “a piece of genetic material” or just a “donated cell”. But to many donor conceived people, it’s so much more.

Donor offspring desire to know about their genetic relatives.

Genetic uncertainty has clouded my life since I was 12 years old, when I learned that my conception was facilitated by an anonymous sperm donor. Though the shock dissolved in the following months, I’m reminded of this obscurity entwined in my DNA when I’m asked to fill out a medical history form at the doctor’s office and have to indicate that, genetically speaking, half of my family tree remains in shadow. I’m joining the Donor Sibling Registry in the hope of connecting with others who have had similar experiences, hearing stories, and maybe even finding a biological half-sibling or relative.

Even children of donors can be curious about their half siblings.

We often talk about the importance of honesty in donor families, and honoring a child’s curiosity about their first-degree genetic relatives. Do donors also owe their own children the truth about their donating? Do the donor’s children have a right to know that they (may) have half siblings? DNA testing is already revealing theses family connections, and it will only continue to become more common. My guess is that most donors do not inform their families, as some are ashamed, some don’t consider donor children as true “family”, some are afraid of 100 kids coming forward, and some have spouses very much against it. I should note that we do have a few thousand donors on the DSR who are open to contact (with some wonderful resulting stories), and we do hear about positive donor-offspring connections also made through DNA.

I recently found out that my father donated to sperm banks many times years ago and I wondered if I have any more siblings out there.

Why not give children the opportunity to grow up knowing their half siblings?

Our kids are two and half years old. They are only 3 weeks apart in age. They are so alike and they are so different. They spent 4 days together, fighting and playing and then fighting some more. Within our individual families they were only children. In our new family they are very much sister and brother. There aren’t words to explain the sense of peace that has given us as parents. There’s no yardstick that can measure how much this has enriched our lives.

Some parents who have seen their children’s half siblings posted on the Donor Sibling Registry (DSR) have said that they will wait to establish contact with the half siblings until their child is old enough to make that specific request. Generally, children don’t decide when to meet their relatives. (They also don’t decide the timing of a lot of things!) We don’t wait until they show interest or ask to meet Aunt Shirley, Cousin Frank, or Grandpa Larry to make the introduction. Our children grow up knowing their relatives, and then, when they are older, they choose who they wish to be in contact with.

Just imagine being 20 something and finding siblings on your own when DNA testing is even more wildly popular, or they find you. You then develop some kind of relationship. You find that many of these siblings had parents who encouraged these relationships, even from babyhood. You see the pictures, you hear the stories. Disney, camping, birthdays… A couple of them will be roomies in college, maid of honor in a sibling wedding, etc. To me, this would be crushing. I would feel so cheated. Whether or not I had great neighbor pals, awesome cousins, or even siblings from the same home.

We chose early contact with half siblings because we felt if he wanted to end contact when he was old enough to choose, he could. But if we waited until he was older, and told him we knew his half siblings all along, and he wished for that contact, there would be a lot of years and missed opportunities gone. We feel being open, honest, and having connected early on may instill a sense of pride and ward off any shame that may come about if we were secretive about this part of his story and family. We also have a son who was adopted at birth so we are big on celebrating and embracing the ways in which our family came to be.

For most, connecting with half siblings on the DSR has been an overwhelmingly positive experience:

I just found my half-sibling this year. I am 29 years old and wish that I could have known him my whole life. It is really special, and I’m so thankful to have found him. We met a couple of months ago and it’s like we have known each other all along.

I think it’s really cool that I have siblings (Im close to three sisters and one brother). We get closer every year because we FaceTime, text, and get together in the summertime; ever since I was three. My sisters and I are now teaming up against our brother. And it’s fun picking on him. We live thousands of miles apart, yet it feels like we all live together. We’re talking about going to college in the same town.

Twins (on either end) meet half siblings for the first time

You’re never too old to find half siblings.

When I signed up with the DSR a year ago, I did it more with the hopes of finding information about my donor, than with any thoughts of actually finding a sibling. After all, I’d be conceived in the late sixties, well before the existence of sperm banks with registered donors. At that time everything was very secretive, with absolutely no information given to the parents. When I got to the DSR, I was the first person to create a listing under my mom’s doctor’s name, from New York City. About eight months later, a woman emailed me to say that her mother had used the same doctor as mine, just two years later. We figured we could band together to find out as much info as we could about how the doctor (now long deceased) had gone about finding donors. After a few months of research, we were able to piece together that the pool of donors he used was actually very small. It honestly hadn’t occurred to us before that we could be siblings, but once we learned about the small donor pool, we figured why not give it a shot. So we found the most reliable and thorough testing facility, and did a half-sibling DNA test. Lo and behold, it came back with 99.7% certainty that we were sisters! So for all the older donor offspring out there who have only fragments of the story of their conception, don’t give up hope.

And finally, of course there are no guarantees that all family connections will be entirely positive.

Some people are suspicious when they look at the success stories on the DSR, and have asked, “how can these connections all be so positive?” While the great majority of new family connections on the DSR are indeed very positive, some might be more flat or sometimes even more of a struggle. Our families are made up from all races, religions/non-believers, academic backgrounds, gender identities, sexual orientations, abilities, socio-economic backgrounds, political perspectives, nationalities and varied personality types.

All families have issues. Not all people are like-minded, or have enough in common to wish for continued relationship, and sometimes people don’t agree on the desired level or degree of contact. When we look around our Thanksgiving table, do we want to hang out with everyone there? Sometimes not! Some family members are just not the kind of people you’d want to hang out with, and some may just be people with whom we don’t have enough in common. Are these reasons to not seek out your (or your child’s) unknown genetic relatives? We think not!

* People who sell their sperm and eggs are commonly known as “donors”, although most don’t actually donate anything.

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