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

 

Posted in Blogroll, General Entries, Sperm Bank News | Tagged , , , , , , , | Comments Off on Choosing a Sperm Bank…What To Know

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.

Posted in Uncategorized | Tagged , , , , , , , , , , , , , , , , | Comments Off on Sperm & Egg Donation: Telling is the First Step

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.

Posted in Uncategorized | Tagged , , , , , , , , , , , , , , , , | Comments Off on Half Siblings from Sperm and Egg Donation

The DSR Files an FDA Citizen’s Petition

We filed a “Citizen’s Petition” to the FDA, and it’s now available for people to add comments. Please, add your comments, as the more we get, the better our chances of accomplishing something (anything….even a further conversation with the FDA would be considered success). https://www.regulations.gov/docket?D=FDA-2017-P-0052

From my FDA contact: Good Morning Wendy,

I’ve attached your acknowledgement receipt for the petition. Its docket number is officially FDA-2017-P-0052.

You may view or comment on the petition through www.regulations.gov here is the link to your petition: https://www.regulations.gov/searchResults…

I have sent the petition to the FDA’s Center for Biologics Evaluation and Research (CBER). Per regulation the center has 180 days to respond to you about this petition. That response may be a decision or an interim response. We won’t likely receive an update before that time unless the center has questions for you. In that case, they will contact you directly.

A few examples of initial public comments:

“Our cryobank has been unable or unwilling to locate our “identity release” donor for 6 months now, despite all requirements/paperwork being in order, and does not return phone calls or emails regarding the status of our request to contact the donor.
However, with DNA testing we were able to locate the donor ourselves, only to learn that some of the original information we were provided by the cryobank was incorrect, including identity release status, ethnicity/religion, college information, SAT scores, and certain health information. This industry needs to be regulated so that donor information is factually correct and that the cryobanks are being forthright and honest in their dealings with clients.”

“The United States is one of the only developed countries on earth that is lacking crucial regulation and oversight of the artificial reproduction industry. There is ample research supporting the negative effects that this lack of regulation continues to cause. The FDA has a responsibility to put common sense regulations in place to ensure the safe and ethical creation of human lives by donor conception.”

“I strongly support additional review of the donor gamete industry. I believe the FDA should engage in further investigation of the business of egg, sperm, and embryo donation as a basis for developing further regulation and oversight. As an academic who has studied and written articles and books about the fertility industry, I strongly urge you to undertake additional review. Thank you.​”

​“I reported to the sperm bank that my child was diagnosed with cancer (lymphoma/leukemia) the same week of his diagnosis and provided proof, so they could report it back to the donor and to the other families who had used the same donor. Almost two years later, none of the 11 families I am in contact with have been notified about my son’s condition.”

And I also submitted a comment:

Recent input from families who used California Cryobank  (from the DSR’s Secret Facebook page, January 2017). This information illustrates the dishonest manner in which sperm banks (California Cryobank is not unique in this respect) disseminate information about limits on numbers of offspring for any one sperm donor:

“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. ”
“Back in 2004 I was told that each donor had 10 vials and that was it. ”
“When I used CCB in 1999 they told me limited to 30 families- as of right now there are 30 kids.
“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.”
“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.”

Note: When a prospective donor called CCB last summer 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.”

 

 

 

 

Posted in General Entries, Sperm Bank News | Tagged , , , , , , , , , , , , , | Comments Off on The DSR Files an FDA Citizen’s Petition

Sperm and Egg Donation: 10 Things Your Doctor, Clinic, or Sperm Bank Won’t Tell You

10 Things Your Doctor, Clinic, or Sperm Bank Won’t Tell You

1. Most donors* and recipients are not properly educated, counseled, or informed beforehand about the needs and rights of the children they are helping to create. This includes the importance of connecting with families to share and update medical information, and the innate desire of donor conceived people to know about their first-degree genetic relatives.

2. There is no comprehensive medical and genetic testing conducted by clinics and sperm banks. In the US the FDA only mandates for STD testing and for a handful of other diseases. Some facilities test some donors for some diseases. Testing for STD’s does nothing to prevent transmission of genetic illness. Proper genetic testing of all donors is critical. Hundreds of medical and genetic issues have been reported to the Donor Sibling Registry, many of them hereditary.

3. There is little to no regulation or oversight of the US reproductive medicine industry, which ships sperm to over 40 countries around the world (so this is a global issue). This industry is not required to maintain or update records regarding genetic disease transmitted to donor offspring. Information about inherited physiological and psychological predispositions are a significant element in obtaining appropriate medical care, particularly in preventative health care including screenings and preventative medicine. Examples: genetic predisposition for heart diseasemental illness, or Cystic Fibrosis. A donor’s medical profile is merely a self-reported family health history, along with a snap shot of one day in the life of a healthy young adult. 84% of surveyed sperm donors and 97% of surveyed egg donors were never contacted for medical updates.

4. No accurate record keeping exists about how many offspring are conceived for any one donor. Records, if any are kept, are incomplete regarding the number of offspring created from each donor, as all reporting is voluntary. There are many large cohorts of half-siblings, some now as large as 200. If urgent medical issues arise, families can not then be notified. Many families who are on file with the sperm banks claim that they were never notified about medical and genetic illness reported to sperm banks by donors and by families who used the same donor: they learn about the genetic and medical issues by connecting with other families on the DSR.

5. Around three quarters of surveyed donor offspring advise that prospective parents do not use anonymous donors. Many countries have banned anonymous donation and we all need to ask the question “what is in the best interests of the child to be born?” “Anonymity” is never the answer. Many heartfelt stories and testimonials by donor offspring have been reported to the DSR. Many parents use donor conception instead of adoption because a genetic connection is important to them, but then negate the importance of that very same genetic connection when it involves their child’s relationship to the “donor”, the other half of their child’s genetic family, ancestry and medical history.

6. Many donor conceived children long to connect with their half siblings and their donors long before they are 18. 18 is an arbitrary number set by clinics and sperm banks to protect their own financial liability. This age limit is not backed up by any psychological research. Quite to the contrary, research has shown that many wish to connect, and have made successful connections, long before the age of 18. Thousands have been doing so on the Donor Sibling Registry for more than 16 years.Many egg clinics (not one sperm bank) have been connecting donors and parents on the DSR (anonymously) from pregnancy or birth for years. This allows parents and donors to share and update medical information right from the start, and it allows children to have access to their biological parents from the moment they start asking questions.

7. DNA: Donors Not Anonymous. Anonymity is a thing of the past and shouldn’t be promised to any donor or to any prospective parent. Sperm banks and egg clinics need to stop the fallacy of selling “anonymous” donors. Donor conceived people have been locating their biological parents via DNA testing (along with Google and social media) since 2005, as reported in New Scientist Magazine, so this is not news. Donors do not need to test their own DNA in order to be easily found by offspring and/or their parents, and there is no law prohibiting contact. Donors must be willing to be known by any offspring they help to create – and long before offspring turn 18.

8. Because of this end to guaranteed anonymity, nondisclosure is no longer an option. Many people who swabbed their cheeks to learn more about their ancestry and family tree have been shocked to find out that they are not genetically related to one of their parents, because their parents used a donor, and kept it a secret. Many have also been shocked to connect with half siblings. Finding out in this way that your parents have not been honest can wreak havoc on a donor offspring’s sense of trust and stability in the family. If you are a parent who has yet to tell your donor conceived child that they were created with the help of a donor, now would be the time to have that conversation, and we can help with that. It’s never too late to tell.

Family secrets can be toxic, and your donor conceived child has a right to know about the methodology of their conception, about their medical background, and about their ancestry. If parents have not told, there is usually some grief associated with infertility that is unresolved, or there is an unfounded fear about a non-bio parent’s relationship with the child being negatively affected by the truth coming out.

Parents: This shouldn’t be about your unresolved grief, your hesitations, or your fears. This should be about what’s in the best interests of your child, and their right to the truth about themselves, their medical background, their ancestry, and their genetic relatives. After telling (or after your children find out via DNA testing), please do not ask your children to keep the “secret”. This may have been your secret, but it shouldn’t be theirs. This type of response could cause unnecessary resentment, anger, and upset. Secrecy implies shame, and donor offspring have nothing to be ashamed of, most certainly not the methodology of their conception. Get yourself some counseling to help work through your unresolved grief, fear, or shame so that you don’t pass it along to your children. You are, and always will be your child’s mom or dad. You can work on becoming a more confident parent, secure in the knowledge that your child knowing the truth won’t rattle the strong parental foundation that you have built.

9. Telling is just the beginning. Many parents think that just because they have told their child about his/her origins, that this will be enough. Many then minimize the importance of the “donor”, thinking that because they don’t feel DNA is important, then their child shouldn’t either. Parents need to know that their child may view this invisible one half of their DNA to be a very important part of their identity and they may feel an urgency about gathering information and also connecting with their previously unknown genetic relatives. DNA isn’t the only way to make a family, but the importance of familial DNA connections can’t be denied. Honor your child’s curiosity, and let them know that they have your full support as they venture out for more information. Don’t behave in a way that forces your child to search for answers behind your back, as that can only create more resentment. They need you to be on their team.

10. The choices you make early on about creating your family with a donor will affect your donor conceived child for many decades to come. Try to think beyond your own needs, and educate yourself about what we now know to be true for donor conceived people.

The Donor Sibling Registry (DSR) is a US based, global registry with a mission of connecting, educating, and supporting all those in the “donor family”. The 501(c)3 non-profit organization facilitates mutual consent contact among donors, recipients and offspring, so that they can share important medical information, and explore new relationships. Since it’s inception in 2000, the DSR has helped to connect almost 14,000 of its 52,500 members with their first-degree genetic relatives.

* No one is “donating” anything, as all eggs and sperm are sold.

Posted in Sperm Bank News | Tagged , , , , , , , , , , , , , , , | Comments Off on Sperm and Egg Donation: 10 Things Your Doctor, Clinic, or Sperm Bank Won’t Tell You

FINDING OUR PEOPLE: Wendy and Ryan Kramer’s Story by Ellen Glazer

As someone inveterately curious about people’s lives, I hit “pay dirt” recently. Not only did I get to hear a family story in some detail, but it was not “just any” family story. My “pay dirt” took me to a series of interviews with Wendy Kramer. I had the incredible pleasure of hearing about her experiences as a mom helping her son, Ryan find his people. As the search unfolded, it was clear that these were Wendy’s people as well. Here is a bit about why we had the interviews and how they worked.
First the why…For many years the DSR website has received and shared family stories of search, connection, kinship redefined. Countless stories have been offered, but one has remained largely in the background. I know that as a board member and reader of the book Finding Our Families: A First-of-Its-Kind Book For Donor Conceived People and Their Families, I knew bits and pieces of Wendy and Ryan’s story, but I had no sense of a time line, of how much—if at all—the website assisted Ryan in his personal search, about what –if any—relationships Ryan had with genetic siblings, his donor, extended family. There were pieces of information but I had lots of questions. Admittedly, I’m a family story junkie, but in this instance, I was pretty sure I was not alone in my curiosity. From my perspective, this was a story worth telling and long overdue.
Now the how…This was the fun part! I don’t watch TV, but have heard from so many others of the thrill of moving from episode to episode of an exciting and engaging series. Who among us has not known –or been—someone tethered to Mad Men or Orange is the New Black. Over the course of five or six weeks, I had my own thrill of going episode to episode: for me it was the Wendy and Ryan story.
I suppose that Wendy and I could have covered the Kramer’s story in one long, intense phone call but that wouldn’t have worked for me. Instead I needed to take each episode in, write it up, marinate on what I’d learned and then move on. It was clear that each twist and turn in Ryan and Wendy’s journey taught them new lessons about family and that these lessons were well worth passing on to others. I wanted to not only hear this fascinating story but to make sense of it. And so it was to this end that Wendy and I spoke once each week for about an hour over five week span. I remember looking forward to each call, eager to find out “what happened next” and how it was all unfolding.
Our conversations continued until the story was current and there was nothing more to tell—at least not yet. Hopefully Wendy will share new chapters in their story as they unfold and I will have the opportunity—I hope—to add them to the narrative you will see on the DSR website. For now, I hope that you will find Finding Our People (the link to the pdf can be found here, on the DSR’s Board Member Page) as moving and compelling as I did. It more than satisfied this family story junkie.
Ellen Glazer, November 2016
Posted in Uncategorized | Comments Off on FINDING OUR PEOPLE: Wendy and Ryan Kramer’s Story by Ellen Glazer

Telling Early, Very Early by Ellen S. Glazer, LICSW

When people come to me for “donor counseling,” I begin by asking them what would be helpful. Almost always, the response is the same, “We’re wondering what would be a good age to tell our future child about the donor?” This wording, their tone and accompanying facial expressions all tell me that these future parents are frightened. Much as they long for a successful pregnancy, they fear that it will be followed –at some point–by difficult and painful conversations with their child.

In an earlier DSR blog I tried to turn this fear on its head and suggest that conversations with donor conceived children offer wonderful opportunities for proud storytelling. But when does that storytelling begin? And how do parents begin the conversation? My advice is pretty consistent and shared—I think—by others experienced with donor conception. Tell early. Tell naturally. Tell before your child can begin to understand.

There are several reasons why telling early makes sense. Here are a few “top liners”…

There will be no “moment of telling.” If you talk with your child openly and naturally from the time she is an infant, you avoid the burdens that come with a “moment of telling.” Your child will grow up with this knowledge and it will be woven into his identity from a young age. And if you speak joyfully and with pride, as I have suggested in my Storytelling blog, your child’s feelings about this information will mirror your happiness. I’d expect something like this to go through his little mind, “My parents look and sound so happy when they talk about how I was born. I can tell I made them happy.”Another reason for telling early relates to storytelling. If you subscribe to my “proud storytellers” outlook, then you will want to tell the story in its entirety from the start. The story begins long before your child was conceived, let alone born. It begins in your own family and if you have a partner, in his/her family and in your union. It is all one story and now you are weaving the donor into it. Children love to hear stories and they especially enjoy stories about themselves. You will be treating them to even more—stories about you and your families. Your early conversations will begin to root them in your families and shared history.

Next, let’s focus your feelings: it’s simply easier and more comfortable to begin the conversation when your child is too young to understand. Many parents call it “practice time.” They appreciate being able to separate their own lingering feelings of loss and disappointment from their child’s experience, reminding themselves that for their child, donor conception is in no way associated with negative feelings. This practice time helps many parents rid themselves of their own negativity and move, more securely and authentically, to a place of confidence and pride.

Finally, telling early avoids any risks of procrastination. You might ask, ”Does it really matter whether we tell our child at 6 months or at 18 months?” If the goal is to have a child who “always knew,” you can—I think—safely tell him anytime up to 2 or 3 years of age. The problem, I’ve found, is that once a child is verbal, parents who have yet begun conversations, are prone to delay telling. Some rationalize it, saying to themselves, “this is not a good time.” Others simply avoid the subject. “We just keep forgetting,” they may say.

Telling early should not be confused with telling often. Just as there are parents who avoid, delay, deny, there are others who over-emphasize. Since one of the reasons for telling early is that you don’t want your child to feel different –at least not in a negative way—you don’t want to talk about it to the point of magnifying differences. Children will surely pick up on this. A parent who perseverates about donor conception can generate self-esteem issues as significant as one who waits until a child is much older to tell.

Babies babble. Parents can babble too. Babies gurgle and coo. Parents can gurgle and coo too. My best advice is to join your child when he is still a baby. Yes, it may sound at the start like foolish babbling but clear communication will take shape over time. Before it does, you will be building your self-confidence, rooting your child in her proud history and setting the stage for a lifetime of open, honest conversations about matters big and small.

 

 

 

Posted in Uncategorized | Comments Off on Telling Early, Very Early by Ellen S. Glazer, LICSW

California Cryobank Discourages Donors From Posting on the DSR

For those of you who used California Cryobank, and wonder why your donor hasn’t yet registered on the DSR, here’s a possible reason why: A former California Cryobank donor just emailed me about what CCB had just told him about the DSR. He said, “…they were quite strong in their position that I should NOT register [on the DSR] bc there are likely errors with people putting wrong donor id, or even fakes.. so that if I register, CBank says there’s more than a slim chance I’d be reaching out or opening up to people not really offspring of mine.” If you used CCB or are a CCB offspring, I encourage you to let CCB know how you feel about them discouraging donors from posting and connecting on the DSR.

This from the sperm bank who has been known to delete urgent medical information from a donors profile?  They are the ones who have acted unethical and irresponsible. Not just my personal experience, but check out the user comments for CCB on our “Which Sperm Bank” page of the DSR.

We have been operating since 2000, long before CCB ever thought about having a registry. We spend many thousands of dollars each year to maintain and protect our website and our member’s privacy. We have successfully connected more than 13,200 people, and just this week hit 50,000 members. In all that time, and through all those members, we had one single donor impostor, a couple of years ago. I caught him within the first 24 hours. Certainly not worthy of negating our 16 years of hard work and thousands of successful connections!

Posted in Sperm Bank News | Tagged , , , , , , , , | Comments Off on California Cryobank Discourages Donors From Posting on the DSR

Proud Storytellers- A Guest Blog Post from Ellen Glazer

“We cannot know who we really are until we know the stories of our lives.”

                                    Daniel Mendelsohn in The Lost: The Search for Six of Six Million

 

“Do you think we really need to tell our child?” This is a question I hear often from people considering or pursuing egg or sperm donation. Many feel beaten down by years of infertility and want to move on to parenthood feeling confident and secure in their authenticity as parents. They fear that conversations with their children about donor conception will undermine their relationships with these long awaited, cherished children.

For many years, my response to the question was always the same. I took a deep breath, went looking for my most compassionate voice and tried to gently tell them why talking with their child was something they needed to do. I’ll admit that it probably came off as a bit of a lecture, with me cautioning them on the hazards of secrecy. Somehow people took note of what I said and as time went on, they began to come back to me with accounts of the conversations they had with their children. These accounts were sweet, poignant, wise, funny, tender, playful and inspiring. They were never sad or mad or ugly in any way. For me, a light bulb went off: the very conversations that parents feared most were actually not-to-be-missed opportunities.

Shortly after the light bulb went off, I consulted an old friend who is a distinguished child psychotherapist. I said nothing to her about the questions parents ask nor of my responses to them. I simply asked her if she might have any advice to someone who was a parent through donor conception. Without missing a beat she replied, “The parents need to love the story and their children need to know that their parents love the story.”

So how do parents love the story? Many of you come to donor conception after years of disappointment. Your efforts to start or expand your family may have included several failed IVF attempts. Along the way, you’ve been told you have “bad eggs,” or you are “a poor responder” or you “failed the cycle.” It is hard to come to donor conception feeling great about yourselves and about the process. However, it is important to remember that there is another side of things: your future child’s perspective. Try to remember, as you move forward, that your child does not have to experience loss.

The story that you will tell your child is the only story your child will know. You are the authors of that story and you have the opportunity to write it well and tell it proudly. Yours can be a story of resourcefulness and resilience, of dealing with disappointment and moving beyond it to a very positive place. You can pack into your story several important life lessons about how people can cope with adversity, compromise, collaborate and most important, grow their family. As author Bruce Feiler tells it in “The Stories that Bind Us,” (NY Times March 2013), your oscillating family narrative offers your children “a strong intergenerational self.” Feiler offers up compelling research that testifies to how being strongly rooted in one’s family history, with detailed knowledge of that history, serves young people well, especially during their teenage years. They have “the security that comes from knowing they are part of something bigger than themselves.”

I encourage people embarking upon donor conception to make decisions that they feel will set the stage for great conversations with their future child or children. For some this means having a known donor or one who is willing to be identified. For many it means joining the Donor Sibling Registry and being able to say to their child, “I knew this might be important to you.” For all, it means chronicling the story from the beginning and preserving all the memories that make the story. As author and professor Joshua Gamson writes in Modern Families, “Stories help things make sense. They put things in an order. This is how it happened. They are also the stuff from which identities are built. Creation stories, in particular, are about selfhood. ‘In telling the story of our becoming, as an individual, a nation, a people. ”

And so, to circle back to where I began, yes, for sure parents “need” to tell their children the truth about their origins. From my vantage point, this is an opportunity not a burden. All parents do right by their children by rooting them securely in their family history. Donor conception offers a helpful reminder to parents that “we cannot really know who we are until we know the stories of our lives.”

 

 

Posted in Uncategorized | Comments Off on Proud Storytellers- A Guest Blog Post from Ellen Glazer

THINKING ABOUT SELLING YOUR SPERM OR EGGS?

Springbreak

Selling your sperm or eggs means much more than paying for a spring break vacation.

This kind of irresponsible advertising (from a NY sperm bank*), only goes to show the lack of proper education given to prospective donors about decisions made now for a quick buck, that can affect them (and their families) for the rest of their lives.

If you are considering selling your sperm or eggs, are you thinking about your medical history, past, present and future?

Would you be willing to provide ongoing current medical information with respect to yourself and your immediate family? As a “donor”, it is important to consider the ongoing ramifications for any children conceived who share your DNA. If you sell your sperm this year, the sperm may be sold for many years into the future and potential mothers may keep that sperm for many years after purchase, attempting to provide their children with full biological siblings. Several families on the Donor Sibling Registry (DSR) report that they know of half siblings more than 20 years apart in age. Egg donors who donate to the new egg banks are now facing similar situations.

Should you or a member of your immediate biological family develop a health or medical issue following your initial completion of the donor interview, it would be essential that you provide this information to the sperm bank or egg clinic/agency/bank and post the information (anonymously if you’d like) on the DSR website, www.donorsiblingregistry.com, which enables donors, recipients, and offspring to make mutual consent contact, to meet each other, and also to share and update medical/genetic information.

Published research has revealed that 97% of egg donors and 84% of sperm donors have never been contacted to update their medical records, while 31% of egg donors and 23% of sperm donors report that they, or immediate family members did have medical/genetic issues that would be important to share with families.

It’s not just your looks, intellect or athletic abilities that might get passed along. Susceptibility to disease is also often inherited. For many years after your original donation, children who share your DNA may develop medical and health concerns that can only be properly addressed with your updated information. Conversely, it might be crucial for you to know about any medical issues reported by families, as you may someday have children of your own. It is also important to note that the accuracy of the medical and health history you provide to the sperm bank or egg clinic/agency/bank is crucial to the potential parents reviewing that information. Certain conditions carry genetic components that are not readily tested for, and your accurate information is vital for proper screenings, testing, and preventative care.

If you have children of your own, or plan to….

Have you considered the possibility that in this small world your children may encounter biological half-siblings?

At the present time, sperm banks and clinics do not keep, nor are they required to keep, any record of live births resulting from any specific donor. What this means for the children born with your DNA is that they may be many in numbers. Currently, the largest group of half-siblings on the DSR is around 200. The children you have now, or may have in the future, may meet your biological children born from your donations. Random meetings among half-siblings are regularly reported on the DSR. Honesty is essential. Before you donate, consider your willingness to be forthright with your children.

Are you planning on donating anonymously?

If you are planning on being an “anonymous donor” it is important to understand that because of advances in DNA testing and Internet search engines, the likelihood of your remaining “anonymous” in the future is growing smaller. Have you considered what your reaction will be if you are “found” by your biological children in the future? The children born from your donations may be curious and will want to search out their ancestry, medical backgrounds and their genetic roots. As noted above, many donors have more than 20, 50 and even more than 200 biological children.

Have you considered the possibility that you will be contacted in the future, even if your donation is anonymous? How would you respond if, one day in the future, you were asked to meet with your genetic offspring and his or her parents? You will need to think about the fact that this could be potentially disruptive to any family that you may have formed in the traditional manner.

With this in mind, would you consider registering on the DSR so that urgent information can be passed back and forth right from the start??

Please consider…

Please consider how you might feel about your donation in the future. It is likely that more than one child will come to exist as a result of your donations. These children are genetically yours; in fact, they may one day have children of their own who will be your genetic grandchildren!

Take a moment to imagine how donor offspring might feel. Many will wonder about where they got some of their physical characteristics. Or wonder about where they get their talents and personality traits. Many are extremely curious about genetic family history and ancestry. And many feel a deep longing to connect with and to know their unknown genetic parent.

Imagine your reaction if your genetic offspring found you and expressed a strong desire to connect, or if they needed a lifesaving bone marrow transplant. Please consider these issues carefully as you make your decision on whether or not to become a donor. Your actions today may have an incalculable effect on the future.

Your donation is much more than a transaction with a sperm bank or egg bank/clinic/agency.

 

*In 2015 this sperm bank gifted $100,000 to the ASRM, the organization that makes recommendations to the reproductive medicine industry. The fox watching the hen house?http://www.manhattancryobank.com/resources/media-press/

Posted in Sperm Bank News | Tagged , , , , , , , , , , , , , , , | Comments Off on THINKING ABOUT SELLING YOUR SPERM OR EGGS?