Tuesday, March 24, 2009

Considering egg donation? Keep it on the down low

Recently I had a blog comment from a lady who is just starting her journey with egg donation, and her post got me thinking back to that time. I realize it's strange for a woman who blogs on the public Web about egg donation, to tell others to keep quiet about it. But bear with me, and I'll explain why.

Using donor eggs is rarely -- never? -- a woman's first choice for how to have a family. Most of us come to egg donation after a long battle with infertility. We run a grueling course of monthly disappointment, failed cycles, and sometimes the heartbreak of miscarriage. And what do women tend to do about our problems, our struggles, our tragedies?

We talk about it. We talk about it a lot.

When I first learned at age 38 that I had diminished ovarian reserve, with a Clomid Challenge FSH of 40 (you all know what that means, right?), my doctor cut straight to the chase. He told us the odds were long on having a child with my eggs. He advised us to switch to a practice that could offer IVF with donor eggs. And he warned that if I pursued pregnancy with my eggs, I would have a high risk of miscarriage.

I was devastated. This diagnosis was truly like a death in the family. It was the death of the children I would never have, and I grieved my loss. Loudly, and to anyone who would listen.

All my friends and family knew what the doctor said and how I felt about it. Anytime my girlfriends and I got together, I talked about my infertility and asked what they all thought about egg donation. Business lunch, football party, it didn't matter -- I talked about my issues. And when I felt I needed even more self-expression, I started this blog. Talking, writing, and a lot of tears: That was how I worked through the grief of never being a genetic mother. Some people hold their pain close. I let mine run wild. For me, it was a coping mechanism. It was how I got through.

To the everlasting credit of my friends, they put up with me. (My husband and family get no credit, as they are contractually obligated to endure.) Two of my dearest friends even offered to be donors.

Fast forward to today. I have two beautiful little girls born of anonymous egg donation. Everybody in my family and group of friends treats my girls the same as all the other kids getting underfoot on holidays. But...they know. In the back of my mind, I can't forget that all of them know my girls' origins.

For me, it doesn't matter any longer what people think of my choice. My girls are perfect in my eyes. If I could wave a wand and make them my genetic children, they wouldn't be themselves. And the world without Madelyn and Lilly, exactly as they are? Not to be thought of.

The problem is, I am not sure how my girls will feel about their donor egg origins. We plan to tell them about egg donation, and it's very possible they would want that part of their history to be private to our family. But it's too late for that. I took that choice from them with all my blathering.

Also, you may decide while pregnant or after your baby is born, that you would rather not tell your child about his or her egg donation origins.

I have had a purely unscientific poll running on this blog for about three years (look at the top right part of your browser.) Of the 273 people who have voted on the question "Will You Tell Your Child About DE?", a full 25% have answered no. If you've told all and sundry that you are doing a DE cycle, you won't be able to change your mind later and keep the choice private. Not without telling some whoppers.

So my advice to you, if you are just considering donor egg: Play your cards close to the vest. Don't talk about it to everyone you know. Or if you do, speak only in general terms. There are ways to get the help and counsel you need without sacrificing your children's privacy:

1. Find a good support forum like Looking to Be a Mom Thru DE, and cut loose there. Take care to maintain anonymity when creating your online persona.
2. See if there's a counselor at your infertility clinic who would talk with you for an hour.
3. Make your partner be your confidant.

I'm not saying you shouldn't tell anyone about pursuing egg donation. Each person's needs and relationships are different, and there are plenty of future donor egg moms whose donor is a friend or family member.

Just keep in mind that once you've told, you can never "un-tell." If it makes sense for you, save that choice for your children.

Thursday, March 05, 2009

Left over embryos: What to do?

We have a basket in our kitchen. It's a pretty big basket. And it's usually overflowing, because it's where we throw unopened mail, receipts, magazines, preschool artwork, papers that come home from school in the kids' backpacks, even the odd library book (found it!).

We pay almost all our bills online, but there are a few that end up in the basket. So unless I've got time to empty the whole thing -- and believe me, blue moons come around more often than that -- I have to root through the pile a once a month looking for accounts that need to be paid the prehistoric way (with a check and a stamp).

One of those comes quarterly, from our infertility clinic. A fee for storage of our frozen embryos.

Before Lilly was born, I paid the fee four times a year without a thought. We were worried about trying again after Madelyn's spina bifida, but somewhere inside me, I knew I'd be doing a frozen embryo transfer cycle. At that time we had eight embryos remaining. Before the cycle that gave us Lilly, I remember considering, briefly, the idea of thawing all of them and transferring the two or three that looked best.

Why would I do that? Embryos are precious, requiring many thousands of dollars to create, and freighted with all our hopes and dreams of parenthood. The more logical course -- and the one we ended up following -- was to thaw four, transfer two or three, and leave four in reserve in case I did not become pregnant. But I did, and now we have our precious Lilly.

And we still have four embryos.

Lilly is a thriving one-year-old, and the embryo storage bill has appeared in the basket once again. It's time to make the decision I wanted to weasel out of by thawing all eight and letting the embryologist choose. Rather coldly, doctors call this "embryo disposition."

In a perfect world -- in which I win the lottery, quit my job, mother my girls full-time, and travel the globe in search of money-is-no-object treatments for Madelyn -- I would not have to face this choice. Or rather, its terms would be different. The decision would become the same as before Lilly: The recurrence risk for neural tube defect is 1-2 in 100 births, versus 1 in 2,000 for the general population. If we chose to roll the dice again, I could take enough folic acid to choke a cow, do another frozen cycle, and let the pee sticks fall where they may.

But in the world I have to live in, we cannot afford another child, especially if that child might have spina bifida. We are still in debt for our donor cycle, and our family's medical expenses are steep. I have no option but to work, yet if I had a third baby we couldn't afford the daycare that allows my income. And even if we could somehow solve that problem, if we had another spina bifida baby, the financial consequences would be crippling.

Some women who don't want to discard embryos would just take the chance of cycling, assuming it's unlikely they'd get pregnant anyway. After all, the success rate for frozen cycles is less than 50 percent. But if there's one thing I'm good at, in my whole sorry reproductive history, it's implanting embryos. (I have done five cycles and became pregnant four times.)

So for all these reasons, I cannot risk another cycle. Even though a deep and irrational part of me desperately wants to. And in complete honesty, I do not know where that urge comes from. It is just a mother's normal sadness when she realizes that she'll never have another baby? Or is it the embryos themselves that trouble me?

I'm not the only one facing this problem, according to a Mother Jones article titled Souls on Ice: America's Embryo Glut and the Wasted Promise of Stem Cell Research. As the article describes, people like me just keep writing the check, year after year, because we cannot decide what to do with embryos we have chosen not to transfer.

I know what you're thinking. You're wondering why I didn't consider the moral and emotional dilemma of excess embryos before I did the cycle that created them. And possibly you're wondering whether I did think about it, and just brushed it aside amid my overwhelming desire for a child.

What I can share is this: It's different now that I have Madelyn and Lilly, born of the embryos we made. Back when we were cycling, embryos were science--and the more we could make, the better our chances of becoming parents together. Now, my embryos are potential siblings to my daughters. No matter a woman's opinions on abortion, reproductive rights, and all the rest, she will think differently about embryos after she becomes a mother through IVF.

Incredibly, as reported at Science Daily and confirmed in a Los Angeles Times article on embryo legislation, some states are considering the idea of making abandoned embryos "wards of the state." Many people, it seems, consider embryos to be unborn children.

It follows that to those who hold that belief, discarding embryos is equivalent to abortion. This idea horrifies me. I have always opposed abortion, the more so since doctors offered me the chance to terminate Madelyn at 19 weeks (after seeing eyelashes on the ultrasound!).

People can and will argue "when does life begin?" until the fabled cows come home, and I won't bite on that one. But I do not believe that allowing a few-celled embryo to stop dividing is the same as detaching a growing fetus from a womb, given the fact that the fetus from very early days has a nervous system to feel the experience.

Is that just an easy answer for my situation, something they call "moral relativism?" Is it ethically indefensible? Maybe. But it's what I've arrived at after more than one sleepless night. I still wish things were different, and we could give those four embryos the chance I gave to Madelyn's and Lilly's embryos. But we can't.

So what are the options for couples with left over embryos? Miracles Waiting has a nice summary:

1. Leave frozen indefinitely
2. Thaw and discard
3. Transfer in a way that cannot produce pregnancy
4. Donate for scientific research
5. Seek embryo adoption

My husband is not comfortable with embryo adoption. And I feel it is disrespectful to thaw and discard our embryos, or donate them for research.

So we have chosen the third option, commonly called "compassionate transfer," in which the embryos are thawed and placed in my body at a time and using a method that cannot produce pregnancy.

It's a strange choice when you think about it. What does it matter whether the embryos stop growing in a dish in the laboratory, or inside my body?

My obstetrician, who is also a friend, put this in context for me: "More often than women will ever know, fertilized eggs 'roll on through' and do not implant. It's the way nature works." In fact, that's exactly what happened to the embryos that we transferred with Madelyn's and Lilly's embryos, that did not grow into children. By choosing compassionate transfer, I'll be putting our remaining embryos back where they would have been if naturally conceived, but not implanted.

And the mother in me, as I think about the children who are not but might have been, simply wants to hold them for that brief time. And say goodbye.