Truth Be Told

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We recommend telling donor-conceived people the truth about their conception very early on (pre-verbal) so that there is never a traumatic “telling” or “finding out” event.  When your child understands how they were created right from the beginning, it just becomes a part of who they are. And additionally, having the opportunity to connect and know their first and second-degree genetic relatives right from the start can be enriching. We don’t wait for our child to be grown before introducing them to their aunts, uncles, cousins or grandparents, so why not let them grow up knowing their half siblings and even their other biological parent and his or her family?

But some parents don’t know how to tell (see my new children’s book) or are fearful of telling because they’re protecting a non-biological parent, afraid of disrupting the family dynamic, and/or afraid their children will feel anger or pain, so they wait and wait, until their children are teens, or even older. As a result, many families who have kept the secret are now struggling as donor offspring are now finding out the shocking truth via DNA testing.

There is a remarkable difference in how older children and adults respond to the news depending on how much parental support they get after they’re told or find out on their own.

If parents:

don’t want to talk about it

dismiss or negate any upset feelings that the child has

don’t acknowledge the child’s desire to know her biological relatives

minimize the importance and weight of the information

express their own discomfort with the information

don’t apologize for not telling sooner

don’t acknowledge that some family counseling may be needed

or generally just tune out

then that child may have a much more difficult time. Older children, teens, and adults should not be left to process this new information on their own. They need to know that any feelings they might have, including confusion and anger, are to be expected and will be fully acknowledged. If they are fearful about expressing their true feelings because they’re afraid of hurting their parents that could cause a harmful disconnect in the parent-child relationship.

If your older child says that she doesn’t want to talk about it and shuts off all communication about it, then you need to be checking in on her regularly, as internalizing any distress can be harmful in the long run.  Refusing to talk about it may indicate that there is some family work to do together. Your prior secrecy might imply that there was something shameful about the way your child was created.  It is your job to make sure that this is not a fact about herself that she is ashamed or embarrassed about. It’s also your job to normalize this news, frame it in the most positive way possible, and then be willing to support your child as she processes the information. If your child is angry with you, that’s not something to be turned away from, but something to face, full on. Apologize.  Own it. Ask your child how you can best support them so that you can move forward together. You can and will work through it.

I regularly counsel with people who are just about to tell and with those who have just told, so I know that telling can be a very healing experience for the family – when parents are prepared to put the feelings of their child ahead of their own.  The burden of this secret is not for the parents to carry, and the truth is owed to the child.

Some donor-conceived people weigh-in:

My mother told me when I was 18 and as soon as she told me it all made sense – it was the big secret that was ever present my whole childhood. I think that had they told me earlier many things would have been different for me and for both of my parents. My parents are smart, free-thinking individuals, who have a history of challenging authority in different ways, and yet where donor conception was concerned, they followed the doctors’ advice and kept it a secret. I believe now that they regret this but that it is engrained for them. They have more guilt around this than I do. And they still have a really really hard time talking about it openly. I think that one major way that it has influenced my life is my deep-seated believe that in meaningful close family or friend relationships it is essential to not hide anything.

I found out at 15. I’m 34 now, and FINALLY getting my life together. I’ve felt lost and alone and felt like I had my identity ripped from me.  Teenagers are ALL going through identity issues. Teenage years are when kids really establish their identity.

I was told that I was donor conceived when I was 12 or 13 years old. I remember at the time both my parents were upset and crying, but as a pre-teen, I acted like I was fine and didn’t really ask any questions, just said it was fine and did not change anything and hugged my parents and went to my room.

I knew about it from the time I knew about anything else in my life–it was a part of me. I’ve always considered my dad my dad just as my mom is my mom. I’m close to my half siblings.

I only just found out I was donor conceived about 3 months ago.  I am 33 years old now, so it was completely shocking.  Learning this turned my whole world upside down.  I am doing better with it now, but I believe it has influenced me my whole life without me knowing it.  I also think it’s insane to lie to your child about such a basic and fundamental truth, and can only begin to imagine the way this shaped my relationship with my parents.   I took a DNA test 3 years ago, and was really surprised by my results.  I never would have imagined my Dad wasn’t my biological father.  I feel sorry for the little girl in me that wasn’t allowed to have access to her truth.  I think the betrayal is the worst part, but I can imagine that even if my parent’s had been honest with me it would have been very confusing to learn this as a child or teen.

Hi! I’m 24 and recently found out I was donor conceived less than a year ago from 23andme when I very unexpectedly matched with a half sister – so this is my take on this. Like you, my parents did not tell my brother nor I, and although they “wanted” to (and I say this loosely because I think they only really said this after they got caught – but I do know their doctor advised them not to tell), they didn’t want to upset me during my teenage years. Fast forward to now….I was devastated and am still devastated. My mom was my best friend and to this day I feel completely and utterly betrayed, and it put a huge rift in our relationship that I feel will never be fixed.

I thought and told my parents that I was adopted from a very young age (~5). I figured out I was donor conceived on my own 21 years later. I definitely had a weird feeling that I didn’t belong to my parents but they were very convincing that it was just in my head. As soon as I realized I was DC, it all clicked.

I always wondered if I was adopted or my mom had an affair. There was definitely a weird feeling, like I was unlike the rest of my family. I thought I was a fluke.

Tell her now, the longer you wait the harder it is for everyone–especially her, which, should be most important considering she is the one who has a right to know who she is and knowledge of her own genetic composition!! Read Wendy’s book and tell her. No other way around it. The only good time is when they’re little and they grow up knowing it. As a 35 yo DC just told, what I wouldn’t have given to have known sooner, especially as we go through our growing years and choosing careers and lives moving forward. Just do it.

My parents tried at various points to tell me that I was donor conceived but it obviously bothered them and it was one of many things we didn’t talk about. It seemed like a secret they were ashamed of. I don’t mind people knowing but given how much they hate it I usually keep quiet about it. My parents are both loving and it’s clear they wanted me, but they react inconsistently so it’s difficult to talk to them about difficult things, this being one of them.

I guessed [my dad] was not my biological father at age 10-11. When I had guessed he wasn’t my bio father, my mom had simply said “I didn’t tell you that, don’t ever bring it up again”. It was life-altering for me.  I all but convinced myself as a teenager that the reason my mom had told me to never bring it up again was because if my dad found out I knew, he wouldn’t have to pretend to love me anymore. A lot to think through as a teenager!

And finally, two of my son Ryan’s new half siblings weigh in:

I found out at age 28 through AncestryDNA, which I signed up for because I had suspected my dad wasn’t my biological father my entire life. I wish so badly that my parents had just told me as a child because growing up I was so different from them and my siblings but didn’t have any way of explaining why. It made me feel like an outsider in my own family, and I felt like I was crazy. Having this information from an early age could have drastically improved my quality of life growing up. This is an important truth of our existence. The shame or discomfort you may feel about telling your child is nothing compared to the gaslighting and distress we experience from being lied to our whole lives.

My mother told me at age 18 very abruptly. After the initial first discussion, it was never brought up again. I felt alone, angry, sad, and confused. I had no one to talk to about what I was going through.  I have spent the past five years of my life trying to process those emotions and thoughts alone with no follow up from either of my parents. I was scared to ask questions. I didn’t know where to start or what to ask.    Not only is bringing to the truth to life important but also being there for your child after they know is. There will never be a “perfect” or “right” time to tell your children.  I wish that someone had chosen to be honest with me when I was younger because we could have avoided these past five years of intense emotions and confusion for me.   P.S.  Follow up with them!

Do not wait for your child to do a DNA test and find out on their on that you withheld this information.

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. – Barry Stevens, Donor-Conceived Person

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Donor Siblings: Our “Spreadsheet Moment”*

18 years ago I posted the very first message on our original Yahoo Group board:

Donor #1058?  Wendy Kramer  Sep 3, 2000

I am the mother of an awesome 10 year old donor child. I know that he has at least 3 donor siblings and would love to contact them. We are looking for Donor #1058 from the California Cryobank. I hope that this board will serve others looking for their children’s (or their own) siblings.

Our half sibling group hit the “spreadsheet moment” this year when my son got his 11th half sister in March.  Two more came along in June and then two more in July. I had heard about many other DSR families having Excel spreadsheets, as once you surpass a certain number of half siblings, you might not remember clearly all of their names along with their birthdates, locations, places of birth, families, and other vitals.

*8/4/18 Update: one more 1058 half sister added to the group!

Because all reporting is voluntary, and because sperm banks want to sell as much of a donor’s sperm as possible, they just do not have accurate records on the numbers of births. In 2000, when California Cryobank told us that there were three half siblings, at least 15 others had already been born.

Some other families who used CCB report:

“In about 1990 they told me ten. I guess it just depends on who answers the phone!”

“In 1991 they said 1 or 2 births was the limit.”

“When I used CCB in 1999 they told me limited to 30 families- as of right now there are 30 kids.”

“Back in 2004 I was told that each donor had 10 vials and that was it. “

“In 2005 we were told the limit per donor was ten families.“

“In 2010, when we chose our CCB donor, we were told 10 families max.”

“They told me in 2011 it was limited to 20 family units but they are now saying it has increased to between 25 and 30 family units.”

In 2011 CCB also told me that they limit families of open id donors to 20 and anonymous donors to 25. “

When a prospective donor called CCB in 2017 and asked this question: “What is the maximum number of children that you allow per donor? California Cryobank told the prospective donor, “12 to 15 family units.”

A former donor reports:

“California Cryobank, where I donated, knows of 35 successful pregnancies from me. Yet, when I donated I was told 10 families was the maximum number who would be allowed to use me.”

And another donor who donated to CCB in the 1990’s reported to me yesterday that he knows of 27 children, so far.

Here’s part of the problem: “Just want to add that I also reported my son’s birth almost immediately to CCB (in 1995), and when I called years later, it hadn’t been documented…”

This also happened to me.  CCB also had no record of Ryan’s birth several years after I reported it myself. And when we visited them in 2011 they had no records of the three half sisters that had all participated in national media stories with us. Even Ryan wasn’t included in their records.

So without mandatory reporting (reporting oversight/regulations), ALL sperm banks will continue to have incomplete record keeping of how many kids are born for any one donor. My donor donated for 5 years. That’s literally hundreds, if not thousands of vials of sperm, as each donation (agreements are for 2-3 times/week) can yield between 4-24 sellable vials. [Seriously, the math is scary].

While each new half sibling is warmly welcomed into our group, I hope, for the sake of my son, his half siblings and their biological father, that the 1058 group doesn’t reach epic proportions[100-200], like many others on the DSR.

A revealing assessment of the American Society of Reproductive Medicine’s “recommendations” for “no more than 25 pregnancies per donor per population of 800,000″:

https://www.donorsiblingregistry.com/sites/default/files/files/ASRM_Limit_of_offspring_per_donor.pdf

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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 fourteen.

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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