There is a huge discrepancy between the numbers that the reproductive medicine industry reports for the health of egg donors following donation. This is important information sometimes given to donors before they donate, to reassure them that the process is safe.

For example, UCSF Medical Center offers this information to potential egg donors:

“There is a small risk of ovarian hyperstimulation syndrome (OHSS) developing during an egg donation cycle.”  http://www.ucsfhealth.org/education/common_questions_for_egg_donors/

Another website, Angel Egg Donation, says this: “In findings reported to the ASRM, OHSS is associated with approximately 1% of Assisted Reproduction cycles.”  https://www.angeleggdonation.com/Donor/DonorRisks

However, our research paints a different picture. In our first study of 155 egg donors (http://humrep.oxfordjournals.org/content/24/12/3144.full), we found that 30.3% reported Ovarian Hyper Stimulation Syndrome (OHSS) and 9.6% reported infertility issues.

In our second survey of 176 egg donors in 2014, we found that 32.4% of egg donors reported complications such as OHSS and infection. We asked about infertility problems after donating and 13% said yes, 49% hadn’t yet tried to get pregnant, and 38% said they haven’t had any problems.

Well, here is one possible explanation for the discrepancy in tracking complications with egg donors. This is from an email I received from a former egg donor yesterday:

“I woke up during one retrieval. What I recall is that the doctor was roughly, rapidly, and aggressively plucking my eggs. I could see the image of my grossly inflated ovary on the screen. I protested in some way — called out in pain or said 'Hey!' His reaction was angry — I felt hostility directed at me; it’s possible that the nurse was actually the intended recipient of this anger. Perhaps she hadn’t knocked me out sufficiently.

I subsequently had symptoms of OHSS ('warnings' or information about this had been extremely light and dismissive). My calls to the clinic went unanswered. I drove down there instead. They quickly got me out of the waiting room full of hopeful parents, looked at each other, and told me, 'Well, go to the ER then. I don’t know what you want us to do.' Keep in mind that they knew ahead of this cycle that I would no longer be donating. There was never any follow up from the clinic.

Interestingly, the records I recently requested and received (after intervention from my doctor) don’t include anything about that cycle other than a few blood tests, whereas the records for the previous donations include detailed sonogram monitoring of the progress of the eggs, information about the meds (names and dosages), and the date and time of the trigger.”

Another discrepancy: The industry (ASRM and SART) do admit that there is no accurate tracking of sperm donation births, but they continue to insist that they have accurate records of babies born through egg donation. In our research, we found that 42% of parents of egg donors children were never asked to report their births. So having accurate records is therefore just not possible. https://www.donorsiblingregistry.com/sites/default/files/files/Oocye%20paper.pdf

This Hodding Carter quote has been the tagline on my emails for many years now. This week I spoke with an egg donor mom who questioned me about it, asking if I interpreted the quote as meaning that donor-conceived children’s “roots” are from the genetic parent(s) and the parents that actually raise the child supply the “wings,” saying that she felt like she was both to her adult son.

To me, the quote means that we parents owe our children both: roots and wings. It’s not just one or the other. Parents who raise donor children do provide both roots and wings in the form of family, security, and instilling our children with the confidence and the tools to fly on their own one day. Also though, we do need to acknowledge the “other” significant part of the roots that we might not be able to supply and that might be very important to our children.

So sure, parents who raise children certainly do provide both. But there is another person who also contributed to our children’s roots: half of their ancestry, DNA, and medical history do come from the other biological parent.

Once again, we hit upon the notion that some parents like to think that the donor is just a “piece of genetic material” or only a “donated cell.” But in fact for many donor-conceived people, it’s much more than that. They have an unknown person who contributed half their DNA, their ancestry, and their medical background: three very important pieces that contribute significantly to who a person is.

Just like in adoption, some kids are not very curious, and some are extremely curious to know about the donor. And as in adoption, families need to be supportive with whichever type of child they get — or you might end up with resentful offspring, angered that keeping the secret was more important than their right to the truth. Or fearful offspring protecting the parents who haven’t yet healed from the pain/shame of infertility. That’s not their burden to carry. It’s not their shame to carry on. Too many offspring come to the DSR in secrecy, behind their parents’ backs, afraid of hurting or angering them.

Secrecy does imply that there is something shameful about the methodology of conception. Donor conception can be talked about openly and honestly between loving parents and their donor children. Telling is just the beginning, though. And having a curious child in no way lessens your importance or significance as a parent. It is an innate human desire to want to know where we come from.

Most U.S. citizens raised by their biological parents never question whether the information on their birth certificates is accurate. With the evolution of adoption and alternate means of conceiving a child, “accurate” is an increasingly subjective term. Is the purpose of a birth certificate to portray a biological account of a person’s birth parents, or is it an account of one’s “legal” parents — ​the ones responsible for raising them​?

The U.S. Bureau of the Census created birth certificates in the beginning of the 20th century as a means of tracking the effects of disease and urban environments on mortality rates. The task of issuing birth certificates was transferred to the Bureau of Vital Statistics, a division of the Department of Health and Human Services, in 1946 where it was decentralized into our familiar state systems of today.

As the document evolved over the past century, so has its purpose. It has become an important (if not our sole) means of identification when we obtain anything from a driver’s license to a passport. It has also become an indispensable tool for genealogical researchers.

​So how do we decide who should be listed in the categories of “Mother” and “Father” on a birth certificate?

For donor-conceived and adopted people, there is often a clear distinction between one’s genetic parents (those with whom you share DNA) and one’s legal parents (the ones who have rights and responsibilities attached to their parenthood, and most often, the ones who are raising them).

However, ever-increasing numbers of individuals in both situations are clamoring for reform, namely their right to have a birth certificate that portrays accurate biological background as well as their legal parentage.

Our birth certificate practices concerning non-biological parents began with adoption. In the mid-20th century, there was rising concern that adopted children’s birth certificates read “illegitimate.” In response, states began to issue adoptees amended birth certificates, listing the adoptive parents as if they were the genetic parents, thus hiding the shame of the child’s illegitimacy and the adoptive parents’ infertility. The originals containing the biological parents’ names were sealed and not available to anyone (including the adoptee) except by court order. The new birth certificates showed no indication that they had been amended, which gave adoptive parents an easy way to not tell their children of their adoption.

Despite the fact that “legitimate/illegitimate” language was replaced with the mother’s marital status in 1979, the practice of amending birth certificates to reflect legal parentage persists to this day. In most states, adoptees’ original birth certificates remain sealed.

No federal birth certificate revision has been issued to address donor conception scenarios. Therefore, married couples in all states who use donor sperm are automatically granted the right to list the husband as the father and women who use donor eggs to become pregnant are listed as mothers on birth certificates. No official asks them if they used any donated gametes to conceive, or for any information about the donor who is genetically related to the child. In addition, in some states, the biological parent and the gay co-parent can both be listed on the birth certificate.

So many believe that they share the same ancestry and medical background as both parents listed on their birth certificate, when instead, they were adopted or an egg or sperm donor has been used, and the child shares their DNA with an unknown person(s).

There is a whole host of concerns raised by adoptees and the donor-conceived, including the right to identity, ongoing medical history, biological heritage, and the right to know their genetic parents. How do we deal with an adopted or donor-conceived person’s right to an accurate birth certificate? Looking ahead, do we keep the same birth certificate structure, or is some sort of adjustment needed?

​Our federal government has been agonizingly slow to address these issues, if it acknowledges them at all. There is a long history of deferring what it considers “family law” to the states, including how parentage is listed on birth certificates and whether or not adoptees can obtain their original birth certificates.

This has caused many to attempt to circumvent their state system by hiring private detectives, posting their information on the internet, or using commercial DNA testing companies. 23andMe, Ancestry.com, and Family Tree DNA now have hundreds of thousands of submissions and are helping connect thousands of family tree branches to one another. In addition, thousands of donor-conceived people have connected with their genetic relatives on the Donor Sibling Registry. Unfortunately, none of these methodologies guarantee the finding of one’s biological parents.

The birth certificate problem exists in other countries as well. As adoptees and donor-conceived people across the world find their genetic relatives and parents, some have taken the task of proper documentation into their own hands.
 
Last month a donor-conceived woman in the UK successfully had her birth certificate amended to remove her legal father, and have the place for “father” blank, since she has an unknown biological father (sperm donor).

Currently, a man in Australia is petitioning the courts to do the same, removing his (now deceased) father from his birth certificate, saying, “I’m doing this because I want an accurate and factual record of my conception, of birth.” He goes on to say, “It’s not just for my kids but also my descendants in that if anybody in the future was to conduct genealogy research on our family, I don’t want them to go down the wrong path and if they have an inaccurate birth record, they will basically believe a lie.”

Adoptees are expressing the same concerns about descendants being able to connect the dots when researching their ancestry. Because two birth certificates exist in adoption, there’s no guarantee that the factual one would be released and therefore “searchable” by descendants. This has led many adoptees in the U.S. to legally change their names to reflect biological relationships.

Ignorance of biological ancestry has had devastating consequences for some. In the U.K. in 2008, twins who were separated and adopted at birth unknowingly married each other. This year, a Brazilian couple found out after they were married that the same biological mother had abandoned them as infants. Random meetings among half-siblings are not uncommon, and many have been reported in the news and on the Donor Sibling Registry. One mom realized that a distant relative, one whom she and her children had spent time with at family gatherings, had donated sperm and was in fact the biological parent of her children.

Although cryobanks claim to limit the number of births to one donor, this clearly isn’t the case. We have seen as many as 200 half-siblings from the same donor connect on the Donor Sibling Registry, and there are many groups of 30, 50, 75, and more… and these are only those families that have registered on the website! Clearly, this poses a public health crisis, in the case of shared genetic illness, or if the offspring are in a concentrated geographic area and/or do not know they are donor-conceived.

The U.S. does not require cryobanks to keep accurate records on sperm donor families, nor are they forced to limit the numbers of children born to any single donor. If a donor reports a serious illness, there is no way for the sperm banks to notify all involved families. Diseases such as NF1, Lynch Syndrome, Cystic Fibrosis, and HCM, a sometimes-fatal genetic heart condition, have all been reported on the Donor Sibling Registry and have been written about in the media. Hundreds of other medical conditions have also been reported and shared among Donor Sibling Registry families, and the sharing of this type of information has saved lives. The problem is that the Donor Sibling Registry is a voluntary website, and in most cases, all families will not be listed and contactable.

The U.S. Surgeon General reports on their website that “A recent survey found that 96 percent of Americans believe that knowing their family history is important.” To help Americans focus on the importance of knowing family health history, The U.S. Surgeon General along with the Department of Health and Human Services created the “Family Health History Initiative.” The website notes that “Tracing the illnesses suffered by your parents, grandparents, and other blood relatives can help your doctor predict the disorders to which you may be at risk and take action to keep you and your family healthy.” It certainly begs the question of why the Department of Health would, by its refusal to address this birth certificate crisis, prevent millions of donor-conceived and adopted people from having access to this information.

In a recent forum discussion about this issue on the DSR, we heard from all stakeholders: parents, donors, and donor-conceived people:

A birth certificate is not a deed of ownership. It is a record of a child’s birth, as in who they came from, and should not be about anyone’s ego. The biologicals should absolutely be listed, so that the child will know who they came from genetically and nobody is able to lie to them.

I think the whole truth should be available to us and treated as a basic right. But I would hope that, in the future, we could all deal with the truth being out in the open (i.e., donor/biological parents printed on the paper version). 

​My thought is that a birth certificate should record all relevant information so that the child has a record of everything pertinent to themselves, regardless of whether anyone else chooses to disclose it to them or not.

I think it’s important to show the use of a donor. I’d like to think that if any of the future generations of my family were trying to look into their family tree, that they wouldn’t come across a wealth of information from my social father which, biologically, would have no relevance to them. I also don’t like the fact that I feel my birth certificate is inaccurate and fraudulent. 

I would like both on my birth certificate. I consider both my social father and my biological father the “dad,” and being donor-conceived to me is something to be proud of. Having that on mine would make me very happy.

A birth certificate is a document that records a live birth and WHO are the genetic beings that are the cause of this live birth — WITH THAT SAID — our society views this listing as who is legally responsible for said child.

As the non-bio mom, but also the birth mom, it would have felt very strange to have gone through 24 hours of labor and then a c-section and to have left the hospital with a birth certificate with “Mother” blank (anonymous donor egg situation). I mean seriously?!?!? That being said, I would have been fine with there being a check box on the form that qualifies “maternal donor gamete conception” and “paternal donor gamete conception.” That should be enough information for future generations to understand that there may not be a direct genetic link to one or both listed parents.

Perhaps the birth certificate could have a place for biological and legal parents: Biological Mother (name or donor), Legal Mother or Parent (name), Biological Father (name or donor), Legal Father or Parent (name). I would have liked to have my daughter’s birth certificate to indicate donor with my then husband as the legal parent. Otherwise, it just doesn’t seem honest.

I am a DC offspring and would like to see donors listed on birth certificates. Certificates are meant to be more for the sake of the child than the parents, No? More information is better, including “donor” being specified (make a third line if necessary). DC children do after all HAVE biological parents, even if they aren’t known. I feel like leaving a blank line on a birth certificate is somehow being dishonest. Putting all information on the birth certificate is a way to ensure that the child’s rights are protected.

It’s easy to see how our outmoded way of recording parentage on birth certificates has created a fiasco.

The United Nations felt the need to address identity in Articles 7 and 8 in its Convention on the Rights of the Child: “The child shall be registered immediately after birth and shall have the right from birth to a name, the right to acquire a nationality...” (CRC Article 7) and “States Parties undertake to respect the right of the child to preserve his or her identity, including nationality, name and family relations...” (CRC Article 8).[3] The U.S. has yet to ratify this treaty.

Donor-conceived adults in the International Donor Offspring Alliance list these as their “Summary of Aims”:

We assert that people have a moral right to know the truth about their personal history. Where the state has custody of relevant information it has a duty not to collude in deceiving or depriving individuals of such information.

Adoptee rights organizations have been fighting for the right to identity, including the unsealing of original birth certificates, for decades. American Adoption Congress states on its website:

The American Adoption Congress believes that growth, responsibility, and respect for self and others develop best in lives that are rooted in truth. The AAC is therefore committed to achieving changes in attitudes, policies, and legislation that will guarantee access to identifying information for all adoptees and their birth and adoptive families.

It follows that:
• The truth about an adopted or donor-conceived person’s genetic and social parentage should be recorded on their relevant public documentation.
• In the normal course of events of life it should be impossible for a person to fail to find out that they are adopted or donor-conceived.
• The principal legal instrumentality of this should be the person’s birth certificate.

Since 1902, the U.S. has made twelve Standard Birth Certificate revisions. Legitimate concerns raised by the adoption and donor communities suggest a thirteenth federal revision should be made to accurately portray biological identity on birth certificates and ensure that procedures are uniform in every state.

Most in the adoptee rights community feel that issuing two birth certificates to adoptees is a leftover relic from an era of shame and secrecy and should be abolished altogether. We believe it is important to issue one certificate only so information cannot be hidden from the individual by parents or the government.

It is no question that the best interests of the child should be paramount. With this in mind, for both adoptee and donor situations, we would recommend a U.S. Standard Birth Certificate revision expanding the “two-parent only” format to include categories for Legal Parents, Genetic Parents, and Surrogates. In the case of adoptees, we would like to see the child’s birth name recorded along with his or her legal/adoptive name.

If the birth certificate is amended in any way (such as adding legal parents when an adoption is finalized) it should be unlawful to omit any original information, including biological relations, from the new copy. We would also seek to abolish anonymous donor conception, or at the very least, list the clinic and the donor ID on birth certificates.

We understand and acknowledge that this recommended system is not perfect. Whether a child is adopted, donor-conceived, or not, parents can always lie on a birth certificate. As donor conception is more easily hidden than adoption, we advocate the establishment of a national registry where clinics and hospitals would be required to record donors and their children.

This has already taken place in several countries, most recently in September 2014 in Ireland, which is in the process of abolishing anonymous gamete donation and creating a national birth register for donors and their offspring. The Children’s Rights Alliance was quoted in the Irish Examiner, saying, “We know the pain caused to the many adopted people who can’t establish the identity of their parents. This bill will ensure that donor-conceived children will not share the same pain.”

There has been much debate in the donor and adoption communities on the “true” purpose of a birth certificate. Certainly, its original and enduring purpose is to keep accurate records for the good of public health. For the individual, a birth certificate has become an indispensable proof of identity and ancestry. It should be of utmost concern to our Department of Health that birth certificates are currently serving neither purpose for the adopted and donor-conceived.

The time for birth certificate reform is now. Unfortunately for many, it should have happened decades ago.

Wendy Kramer, Co-Founder and Director, Donor Sibling Registry; Co-Author, Finding our Families: A First-Of-Its-Kind Book for Donor Conceived People and Their Families (2013); Associate Producer, MTV’s Generation Cryo and The Style Network’s Sperm Donor.

Kristi Lado, Board Member, Pennsylvania Adoptee Rights (PAR); Contributor to Adoption Therapy: Perspectives from Clients and Clinicians on Processing and Healing Post-Adoption Issues by Laura Dennis.