By: Wendy Kramer
Dear Prospective Parents,
Many people have tread the route you are about to take. Assisted reproduction has been in existence since the 1880’s and has helped create countless families. No matter how far along you are in the process, there is some information that you need to know.
Fertility clinics will most likely not discuss with you the cost and benefits of using an anonymous donor versus a known/willing to be known donor. Conventional wisdom has dictated that anonymity is best for the donor and recipient family. Our experience and the experiences of the donor-conceived say otherwise.
It is an innate human desire to want to know where we come from. Just as in an adoption, donor children may become curious as to their genetic, ancestral, and medical backgrounds. For some parents the means of conception might just be a “donated cell” or a “piece of genetic material,” but to their child it’s one half of who they are. It is important to embrace and support this curiosity. Just as parents should feel no shame in using donor gametes, the donor-conceived need to have their curiosity met with open and honest communication.
When donor-conceived people were asked what they would recommend, 77% of heterosexual couple offspring and 70% of LGBT offspring recommended that parents use a known or willing to be known donor. These people have dealt with the realization that they were conceived using a donor, and the fact that the vast majority believe a donor should be reachable proves how important transparency is to offspring.
Some of the larger sperm banks are attentive in the pre-pregnancy stage, but offer no post-pregnancy and donor child support. Most do not update important medical information on donors. Few update and share medical information amongst families and none adequately educates or counsels their donors. Some simply do not return phone calls. The ramifications of this are gaping holes left in the medical records of donors and subsequently, the donor-conceived.
Do not be afraid to quiz the bank on these things. Ask them how you can know that the donor you chose doesn’t already have 33 kids, and that 12 of them haven’t been diagnosed with ADD, ADHD, Autism, or Tourette’s. Medical issues like these are not life threatening so the medical information is not shared. Donors are almost never asked to update their medical info, leaving their medical form to be a snapshot of one day in the life of a healthy college kid who wouldn’t necessarily report accurately about family history. The percentage of donors who donate to more than one clinic is 22-27%.
If there are medical situations in donor or sibling families, there is no way to transmit the possibly life saving information to other siblings. An estimated 20-40% of women never report their live births to the sperm banks. Sperm banks don’t keep accurate records on how many kids are born from any one donor (the largest known group is now at 130); they often sell sperm around the world to small clinics, who in turn sell to recipients who have no idea where the sperm originated from.
The Donor Sibling Registry helps sperm bank users share their experiences, locate donors, and donor siblings. Because you cannot compile a complete medical history on your donor from your fertility clinic, you can use the experiences of others to build upon and gain a greater understanding of the person who will help you create a life. Right now there are people narrowing down the donors to choose from by contacting the families posted on the DSR. They are connecting with the families that already have children from their donor; they are viewing pictures of future siblings and checking the health and medical histories of all those who shared the donor parent.
Until the time comes when fertility clinics and medical professionals address the need for donor transparency and in depth medical records, we must rely on each other for this information. I did not intend to scare anyone; becoming a parent could be the most enriching experience of your life. I just want you to know what so many of us wish we had known. You are not alone; we can draw strength from our common goal born out of love.