For some reason, and I’m not really sure why, an unusual number of infertility professionals wanted to talk with me at this year’s American Society of Reproductive Medicine (ASRM) conference about embryo disposition options. It really was a bit uncanny. Creating a Family has the most extensive resources online for all the embryo disposition options (donate for family building, thaw and discard–including compassionate transfer or ceremony, and donate to research), and I did extensive research and interviews for a book proposal a couple of years ago on how people decide what to do with their unused frozen embryos, but honestly, I’m not sure that was the reason that the conversations kept coming up. Some of the folks knew about our resources and my research, but some did not. It felt like one of those coincident things, except I don’t completely believe in total coincidences, so I’m not sure what to make of it.
Whatever the reason, I’m thankful more attention is being focused on this issue, especially by the medical community. No one knows exactly how many embryos remain in cryopreservation in the US, but the last estimate over 10 years ago was 500,000. The estimate I was working on when I was researching the book was over a million. That number is also outdated now.
One of the things that really struck me with many of these conversations at the ASRM conference is the disconnect with many in the infertility medical community with why deciding what to do with unused embryos is a difficult decision for some patients. When one reproductive endocrinologist, who I really like, heard me speak on compassionate transfer (transferring the embryos to the vagina during a non-fertile time), he shook his head and said he’d never understand people who were in such denial. Another RE piped up that no infertility clinic should allow such “nonsense”.
Dealing With Your Decisions
To be fair, many couples/singles do not struggle at all with the decision. Once they no longer want to use their remaining embryos, they smoothly move to one of the options and don’t look back. However, for others it is a very hard decision, and many are caught totally off-guard by this difficulty. They either thought they knew what they would do, but changed their mind once they had children, or they never gave embryo disposition much thought until they realized they were finished with their family (or wanted to stop trying) and had extra embryos remaining.
I spoke with a couple during a consult yesterday that were trying to decide on whether to move to adoption or keep trying with fertility treatment. Both were ready to move on, but they had five embryos frozen. The wife knew in her heart that their existence would continue to weigh on her, and that no option other than giving them the possibility for life would ever feel comfortable. Donating to another couple felt odd, when they could just as well transfer to them in another attempt. And yet, she was ready to be finished with treatment.
I spoke with another family this fall wrestling with donating their four unused embryos to another couple or to research, but neither option felt right. A month before that there was the couple trying to decide how much contact to maintain with the family that had been created from their donated embryos and what to tell their children. And then there was another family that felt complete with their boy/girl twins, but had decided to thaw their remaining embryos for a transfer, even though they were very torn on whether they wanted more children. As I tried to explain to the reproductive endocrinologists I spoke with at the conference—it’s complicated.
Creating a Family is dedicated to providing unbiased medically accurate information (see links below). We don’t try to push one option over the other, but we do want to spread the word that this is something that should be thought about BEFORE the embryos are created. Much of this work needs to be done with the medical community to encourage them to educate patients before IVF to get them started in the thinking process.
What About You?
Have you faced this decision? Was it an easy decision for you? In keeping with my appreciation of been-there-done that advice, I’m looking for people who either have or would be willing to blog/write about the process of deciding what to do with the embryos they still have frozen. If you know of anyone, please let me know either in the comments or by email (dawn at creatingafamily dot org). Thanks.
P. S. If you are in the process of deciding and need resources to help, consider these:
- Donate to another person for family building
- Donate to research
- Thaw and discard
- General resources for exploring options
Image credit: wistechcolleges
Seriously people should donate to life their embryos. It’s profound…it’s a life waiting to be born. Most likely to a family who will cherish and raise them. Knowing the alternative I’m sure the day they understand how they came to be and all it took. #alive! I’m not a fan of research (lab rats) not unless embryos are compromised. Please give/donate to families your healthy embryos and allow a life. #borntobealive.
Being discarded & left in a dish is not a good outcome.
Dawn, You should contact Parents Via Egg Donation to find people that might be interested in talking with you.
Creating a family really covers every topic about fertility and adoption! We just went through our second visit with the reproductive endocrinologist to discuss all the various things we need to discuss about IVF. One of the things he brought up was whether we thought about freezing embryos. I wasn’t ready for this question because I thought we would just get enough for the transfer since I am older. But he said we just needed to decide just in case we do have extra embryos. Then we got into a discussion about what we do with the additional embryos once we are done and he went through the various options that is discussed in this article. This was just not something I had thought about but now my mind in churning. We had just been focusing on achieving pregnancy! I almost don’t want to think about it just yet.
It’s so interesting. The only option that makes sense to me (at the moment) is embryo donation. Our fertility clinic doesn’t have a embryo donation program so the RE said that we’d have to go through another organization that does this. I don’t know what my husband thinks about this but it is something we will have to discuss. One issue is that we are a mixed race couple – Asian and Black. It is kind of an awful thing to think about, but what is the demand for minority embryos? All the testimonials were Caucasian families…
Honestly, I think we are way ahead of ourselves. But a google search lead me here so I’d thought I’d leave a comment. Thank you Dawn for providing such great information!
AnnonT, for what its worth, I have heard that their is a high demand for minority (every racial combination) embryos.
Someone asked me to add this comment anonymously because no one in their personal circle knows what they are going through. “My husband and I did ivf (after 3 year of TTC and a successful adoption) in September. We did it with donor egg. We were successful in our first attempt and have five frozen blasts leftover. Unfortunately I miscarried at 6 weeks, and have been dealing with the miscarriage ever since. We’re hoping to try again in a few months with two of our frozen blasts. Anyway, we were discussing what to do if the first two work. Before the miscarriage I would have said that we had to use them all, even if it meant flying back (we’re military). Ive always wanted a huge family. I have to say though, now I’m not so sure. We pretty much decided that if it works we’ll pay to freeze them and reevaluate a year or so later. We would either donate to research or to another couple if we decide not to use them. This is a huge inner struggle for me. We literally went through hell to have a family and making the decision to maybe stop is tough. But, I think you get to a point where you realize how lucky you are to have what you have and move on. We’ve been through a lot and this miscarriage is the first time that either of us has considered stopping.
I lean towards donating to research if we don’t use them. I guess I feel like if my struggle can help someone else not have to go through so much, then that’s a good thing.”
This is an important and sensitive topic. Many people base their choices on moral and religious values.
The left-over embryo question will also impact any efforts at expanding health insurance coverage for infertility treatments. Consider the controversy created by the mandate to cover contraception.
I’ve always thought I would donate them to research, but it’s hard not to think of them as potential little babies. However, as admirable as I think it is to those that donate their embryo’s to another couple, I just can’t do that. I would never want to just have them destroyed though. At the very least, the research could help others eventually.
it is frustratingly hard to donate to research unless your infertility clinic has a direct relationship with a research facility. We (Creating a Family) have a list of resources to help folks donate, including a list of facilities that accept embryos.
Wow! I would have never guessed there were so many frozen embryos. And that’s just in the U.S.
Anonymous, keep in mind that many of those that are frozen are still intended to be used by the patients who froze them. In other words, the 1 million figure is not all “left over” embryos that folks are trying to decide what to do with.
Thank you 🙂
Ten years ago, after 3 years of infertility and being told we would never have children, we went through 3 failed IUIs and then IVF. We ended up with 4 viable embryos. Two were transferred and we were blessed with a healthy baby girl. The other two embryos were frozen. Ten months later, we became pregnant with our wonderful son. This pregnancy was an unexpected blessing that happened naturally. My husband was satisfied with 2 children and while I know I am extremely blessed, I’ve always hoped for 1 more. We’ve debated what to do with the remaining embryos ever since. My husband wanted to donate them to another couple. I couldn’t. For awhile he wanted to donate them to research. Again I couldn’t. I’m almost 42 and I know we won’t use the embryos, but I’m emotionally connected to them. After everything we went through, I feel as though they are still my children. I know it sounds weird, but I can’t imagine not having them. Thank you for writing this article. It helps to know that I’m not alone.
Maureen, you are so not alone! That is one of the reasons I want to start the discussion because many people don’t have any place to share these feelings for fear of others not understanding or being judgmental with their decision.
We talked about it a lot before we did our first IVF cycle, and I’m so glad we did, because I ended up with 6 top-rated blastocysts that are chromosomally normal. One is a happy baby, and we hope to get two more kids from what’s in the freezer, but then our family will be complete, so chances are reasonably good that we’ll end up faced with a “leftover embryos” situation. We feel very strongly that they should be donated to another family to be someone else’s kids, but it helped to have decided that ahead of time before we were hit with the reality of wow, a frozen embryo can really make a baby. What we are less clear about is exactly how we’ll find that other family: totally open classifies ad system, a matching agency, or anonymously through our clinic… but I feel really good and happy about the opportunity we will hopefully have to solve someone else’s fertility struggle. My hope is that there will be at least two embryos that we can donate to a family, so they can have genetically connected siblings in their family.
I’m so glad you thought it through first. I agree that it makes it easier to deal with the reality. I will say, however, that a fair number of people I talk to feel differently after they have a child than they thought they would, and then have to rethink their positions.
Great idea. That’s a wonderful group by the way, run by Marna Engel Gatlin. Hey Marna, do you know of anyone who has wrestled with the decision of what to do with unused embryos?