the fertility advocate

Talking, writing, educating, and change making in the field of fertility for more than twenty years

Yesterday was not an easy day.  I was heading to Brooklyn – (I live in Riverdale) to have lunch with a GYN to talk about Single Embryo Transfer and Micro IVF. And some very unlucky souls had a three car pile up on the West Side Highway.  I sat there with a belly full of anxiety – because I was going to be very late for my practice lunch. Never a good thing.  As I watch ambulances speed by me – and helicopters hover – it was hard not to laugh at myself. After all – just that morning I had written a piece for this very blog about the power of resilience and being a tree blowing with the high winds! In that moment – none of it  was working so well for me.

My Blackberry beeped. It was from the Harvard Stem Cell Program where my husband and I donated our embryos very publicly.  You can read all about our decision to donate our embryos to stem cell research in an articled entitled “All That Remains” on  Newsweek On-Line right here. There are videos and everything featuring my entire family. This was a huge decision for us. And surprisingly emotional for me – even all these years later. After all – Spencer – my youngest who is almost 18 years old and starting college in the Fall was one of the cohort of frozen embryos that we were donating. These embryos had been around a long time.

I had been talking about this issues for years.

And I finally thought it was all settled. We had done it. Found the embryos. Filled out the miles of paper work. Received counseling. Jumped through what seemed like countless hoops. And worked through the emotions – and donated our embryos.  Now many months later – the wounds that I felt around my embryos – the sadness – the mixed feelings – had healed over. We had found a great decision – and we finally did it. Not easy. None of it.  But it was done. At least so I thought until yesterday while I was stuck on the West Side Highway – very late for a meeting – and thinking about being a tree blowing in the wind.

One phone call changed everything. You see – The Harvard Stem Cell Program can’t use my embryos. There was a glitch in the paper work. They are sending them back to cold storage at Mount Sinai again. They can’t use them for stem cell research.  And why not I wanted to know?  The reason is that my embryos while they are still in storage at the hospital that I received my medical treatment  the doctors are not. The doctors have moved on to build a separate practice and the lab director where my embryos are stored – cannot attest to the fact that these are in fact embryos that were created without a donor.

Really? They don’t have my records? Why don’t they have my records? Why don’t they know that these embryos  were created by my eggs and my husband’s sperm? It appears that the program at Harvard won’t accept a statement from my doctors because they are no longer at this hospital. It has to be the lab director that was not there when I was a patient.  This is what they call a stem cell catch 22.  Do you have any idea how huge this is? How many embryos are routinely transferred to storage facilities from IVF centers everyday around this country? Are they at risk too? Is anybody advising the patients that it is possible if their doctors leave or if they embryos are transferred to a storage facility that no one may be willing to attest to how these embryos were created? Why is this  so under the radar that a woman like me who spends a tremendous amount of time advocating for infertile people didn’t know?

There is a lot of talk in this country about stem cell research and embryo donation – nobody talks about how difficult and traumatic this process can actually be for the donors.  I sat in traffic and cried. I couldn’t even call my husband. I couldn’t believe that after all of we went through for three months donating our embryos for stem cell research – and documenting it so that others could see the process – that we were right back where we started again.

Our embryos were making a U Turn trip back to cold storage at Mount Sinai.

For a minute I considered transferring them to my own body.  This woman with a 21 year old and a 17 year old – this woman who is closer to 50 than 27 – the age I was when I conceived my first child. I just could not bear the idea of disposing of the embryos. And no – I can’t bear the idea of donating them to another couple – something that might not even be possible as no one in the lab at Mt Sinai has the paper work to prove that these are indeed my embryos created with my eggs and my husband’s sperm.  No one is willing to attest to it.

How many embryos are simply not viable for  anything but destruction because the system didn’t properly take care of them, document them – and advise patients of all of the ramifications of their embryos being stored in a storage facility? Apparently countless embryos.

What an incredible  waste.

About Pam Madsen
Talking, writing, educating and change making in the field of fertility for more than twenty years
3 total comments on this postSubmit yours
  1. First off, I am SO sorry that you are dealing with this emotional upheaval after you already made the decision and moved forward. Having this back in your life again must bring up so many mixed feelings and be a large sense of confusion. ((hugs)) on that front.

    Secondly, THANK YOU for sharing your story on this subject. My husband and I would like to donate our leftover embryos to stem cell research once we are finished with our journey. Right now we have 5 on ice and we will likely (fingers crossed) have 3-4 to donate once all is said and done. We’ve signed paperwork with our clinic to transfer them to research once we are done and I was very at-peace with my decision – happy, even. Now to know that if my RE or the Embryologist leaves and cannot vouch for my embryos – that would mean that I could not donate as I so choose? These ARE OUR Embryos! I don’t simply want them destroyed! I want them to be put to good use – I’m very passionate and adamant about this! It’s outrageous to think of these embryos going to waste! What crappy legal red-tape for the world of science.
    … it’s such a shame. SUCH a shame.
    I’m so sorry for you. I can’t even imagine how you must feel right now.

  2. Thanks Michelle -
    I deeply appreciate your empathy. I feel so completely blind sided by this. I just want to make sure that our patients check out all of the red tape before they allow their embryos to enter any kind of storage facility. The fate of my embryos literally has left me sick to my stomach.
    All Best -
    Pamela

  3. Pamela – Oh I am so so sorry you are dealing with all of this. I really am. I am sure that all of this coming up again has really got leave you with a such a big unsettled feeling. I am sure you do feel blindsided by all of this.

    Those are your embryos. Can you not have them transferred to you and you decide what you want to do with them? Or is it they are having a problem proving they are yours.

    I am glad you wrote this for others who are storing embryos. Hugs. Hugs. Hugs.

Submit your comment

Please enter your name

Your name is required

Please enter a valid email address

An email address is required

Please enter your message

The Fertility Advocate © 2013 All Rights Reserved

Talking, writing, educating, and change making in the field of fertility for more than twenty years

Designed by WPSHOWER

Powered by WordPress