I started to work with Claudia Kalb on the piece that appears in Newsweek online today, “All That Remains”, in August 2009 – that features my family – and follows us through the journey of finally donating our four excess embryos to stem cell research.
I really like Claudia. I have worked with her several times before, through the years – including this great piece called “Should You Have Your Baby Now” that was published in 2001 and is just as timely today. I have always found her to be honest, smart, with great insight into the field of reproductive medicine. So when she called me about this story that she was researching on couples donating their embryos to stem cell research – I knew the time had finally come for me to follow through on my word.
You see, I have been a vocal advocate for stem cell research, and I had embryos that needed donating. My husband and I appeared on 60 Minutes talking about this issue in 2008, and I had even done an op/ed for the Boston Globe called “Don’t Tell Me What to Do with My Embryos” that was published in 2005. I know that there were many, many other interviews on the subject – including an appearance on Capitol Hill. But somehow my embryos never left their storage tanks. Oh yes – one day soon – we would donate them. That was the decision – but it was so hard to do. And my heart – well – my heart just wasn’t really in it.
Donating my embryos were as complicated as our infertility treatment. And to me, those embryos represented so much more than the tiny cluster of cells that I had never even seen. Here I was in Peri Menopause – the days of ripe eggs and babies behind me. I was not in control of that – mother nature did her dance. But I had a secret – a little stash of potential life – stashed away. You never knew – right?
But really….really? I didn’t want any more babies. I hadn’t wanted any more babies for a long time. And Kai and I had wrestled with this decision like those men of the WWF. There would be no more babies. Instead we were left with cleaning up what was left of our reproductive medical treatment. It was emotional. It was upsetting. I felt pressure from everyone – hence the op/ed.
Donating during the Bush Years was complicated and difficult. And I always found a reason to put it off. When Claudia called – I knew it was a sign – I would have accountability – I would have to go through with each awful step – and I would have to sign the papers. So Claudia and I went on a trip through infertility memory lane together. I cried a lot. When the papers came for us to fill them out – long after the interview was over they sat on the table for weeks. I could not open the envelopes. It wasn’t that I didn’t want to donate my embryos to stem cell research – it was just that it was still so hard to say good bye to maybe babies even when I didn’t want them anymore.
I looked at my beautiful sons – and I wept. I knew that those embryos even if transferred had a great possibility of not becoming a baby. I get it. They are the starter kit of a child – and starter kits don’t always work out. And I didn’t even want more babies – not really. But it was the act of saying absolutely no more that was so hard. Closing that door forever that made me feel so emotional. I forced myself to open the envelopes. This was continuing to be incredibly embarrassing. My G-D, if I was having trouble with this no wonder there are literally thousands of embryos forgotten in storage tanks around the country.
I was deeply aware that the article in Newsweek would come out – and my embryos would not be donated! I looked at all the paper work and called my husband. “You are going to have to fill out the paper work. I can’t do it. It’s not that I don’t want to do it . I am not backing out – I just can’t.”
So Kai came home and filled out the pages, upon pages of documents. Then, we still weren’t done. We had to get them notarized. It was always another step. He gave them to me to mail. He told me to get a receipt – I just threw them in the mail box, receipt-less, and wept.
When Claudia called months later to see what happened – I had to tell her that I didn’t know. I had never followed up. This is me -right? The big powerful patient advocate! Once again, I was embarrassed. I called Harvard – no they hadn’t picked up my embryos yet from Mount Sinai. They were waiting for some change in the paper work or something like that. Nothing for me to worry about. My job was done. My kids would not be left with what to do with their parent’s embryos after we had died. One day soon, I was reassured, the embryos would be transferred to Harvard.
So how do I feel now? Well – I cried again when I read that “The Madsen embryos had been claimed at last” in the Newsweek piece. I am no longer embarrassed that I had not followed through with my word that I would donate them to stem cell research – and that one of the best known fertility advocates in the country had embryos lost in storage in the bowels of a hospital somewhere. But I don’t have any shame about how long it took me to do this.
We are dealing with incredibly complicated, emotional human issues – and we still don’t make it easy for people to donate. Donating couples have to jump through a lot of hoops. And when you are feeling conflicted and ambivalent at best – the hoops can feel really challenging. It is simply easier to push the papers aside – and pretend that they don’t exists.
I wish “The Madsen Embryos” G-d’s Speed. I know that they will not be another baby in my family – but it is my belief, a belief that I share with my family – that they will do the world some good. It is our hope that they will help someone else’s baby live a healthier and longer life. And for that – we are incredibly grateful.