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.

33 comments:

millie said...

This is one of the few posts I've ever read that discusses all the options. It really is a huge decision and I appreciate the thought you put into this one (like all the ones that came before it).

Bee said...

Millie, thank you for leaving a comment. The silence was deafening...I know I don't write often so why would anybody stop by...but I was worried I'd written something horribly offensive! Yes, "embryo disposition" -- yukky term -- is a tough choice. And BEFORE you cycle, it's the last of your worries....

J said...

I want to thank you for your post. As we go through the process of deciding what we should do, I know I am not alone. We want some closure, we want to say good bye.
Now that we are done having children, I think a step was over looked in the process, the end. There is so much help and information to help with infertility and once it is over, that is it. But it isn't over, we still have embyros, now what.
Thank you.

Anonymous said...

Thank you for this blog.
I just found out last week that I have diminished ovarian reserve. I am sick over it. I feel so angry that I wonder how I will ever get over this. I am 40 years old. Finally found the man I want to be with and now have to face the idea that we can't have kids together in the "normal" way.
I swear....if one more person tells me that adoption is an option as though it will just wipe this away...I will kick them!!
And I am myself adopted!!
I am surrounded by 3 pregnant women at work....and throwing one of them a shower this weekend.I really am a good nice person....and the last thing I want to do feel jealous and petty....but god help me I do.
Please HELP me!!
I feel like this is eating me alive....I am just warming up to the idea of egg donation.
Does anyone have some words of advice?
Thank you all....I could really use them.

Bee said...

J, you are NOT alone. The remaining embryos are a tough choice and you just never think about it ahead of time...I'm sad over it as I think you can tell from my post, but I just have to look at Madelyn and Lilly and know they were worth every bit of this process!

Bee said...

Anonymous, I wish I could email you. You are at the very beginning of all this, still in the grieving stage, when the emotions are at their very worst. And of COURSE it's hard to be around pregnant ladies, much less throw a shower -- cut yourself a break! Right at this moment I have two pieces of advice for you: One is, PLAY YOUR CARDS CLOSE TO THE VEST. It's perfectly OK to share the pain of the POV diagnosis and the fact that you are not sure what you're going to do...but don't tell everybody in your life when/if you decide to use donor eggs. Why? Well, later on, if you were to become pregnant via DE, you might decide that the information is to be private between you, DH, and your kids. And by then, the horse is out of the barn! Frankly, I wish I hadn't told anybody in my offline life -- not because I'm ashamed but because it's really my daughters' information.

Second piece of advice: Join the support board at Looking to be a Mom Thru DE.

I would love to talk to you some more, so if you feel like it, drop me a note at beedrew_at_gmaildotcom (fix as appropriate to avoid the spam bots). There will be a way through this, even though it does not seem like it right now.

Anonymous said...

Bee, thank goodness for you and your blog. I've found you/it at just the right time. I'm 42 (tho my eggs oughtta know that means 29), with a common infertility story (2.5 yrs in the making, the details of which bore even me), which leaves us with little choice but DE (my DH doesn't want to adopt: 'at least it'll be half ours').

Last week got a BFN from a failed IVF-turned-IUI (1st and last) due to poor ov response - so the grief and loss of what could have been are churning, fresh and raw. Hot tears and visceral wails come while laughing, sitting, driving, reading blogs. I'm angry, and I'm in mourning; the jig is up - the dreams are dying.

But it's a comfort to see some of the feelings I'm having, the thoughts I'm trying to rationalize, mirrored in your older posts. Right now, though, a big part of me feels very alone. And I know that, if we are going to pursue the DE path, I need to get my head straight, need to deal with this grief - with the loss of never seeing my mother in the face of my child like I do in my nephew's face; of never seeing my own face in my child. I've also spent a lot of time thinking about DE (the IVF was along shot) and worrying: worried that I'll resent the baby, resent carrying another woman's child; that it will feel like a foreign object or, worse, akin to carrying my DH's (non-existent) mistress's seed. And many more thoughts and feelings too tedious and self-indulgent to express here.

Although I've debated pressing 'delete' on this a few times, I decided to post it to thank you for sharing your story. It's a candle in a window. I also wrote because I wonder whether you (or others) have felt the same way at some point ('foreign object'/lack of connection) and, if so, what kind of process did you go through to finally shake those feelings free? - L

Bee said...

Anonymous, I am so, so sorry for your BFN. Losing your genetic link to your future children is a death in the family -- there's no other way to describe it. I wrote about my experience in this post: Grieving the genetic link.

My advice to you right now: Let yourself grieve. Give yourself some time. Whatever you decide to do now in order to become a mother, will be that much harder and more stressful if you do not let yourself grieve for what you have lost. Looking back, I realize that I should have given myself more time to grieve for the babies that I lost through miscarriage, which were conceived with my own eggs. I was still in that, in my head, when I became pregnant with Madelyn. It made everything more difficult. So that's my two cents there.

About your other question -- whether I had fears that I would not bond with my donor egg baby or if I would feel like it was a foreign object or another woman's child: Oh, yes! I definitely had those fears. This whole blog was my attempt to work through them.

The "other woman's child" thing wasn't a big issue for me, since I'm a stepmother. My biggest worry was that I would not bond with the baby -- would not feel like it was mine. And by then it'd be too late and I'd have done a very bad thing to the child, giving it a mother that couldn't be its mother.

I'll try to write more about it in a post when I have time to think about it more, but I will be very honest with you here: For me, going forward with donor egg was a leap of faith. I was afraid all through my cycle. It was like part of me knew it was the right thing for us...but I couldn't make those nagging little fears shut up. But once I saw the baby on ultrasound...well, I started to fall in love. And I'm still falling! Now I laugh at how afraid I was that I would not bond with my babies. My girls are mine, mine, mine! The children themselves chase the fear away.

It would be healthier, I'm sure, to get rid of these doubts and fears 100% before cycling. But I'm a worrywart and I'm very stubborn. I knew that if I waited until I felt no fear, had no self doubt...well, I'll be six feet under by the time that day comes. So I had to make the best decision I could at the time, and just go for it.

It helped that the counselor my clinic sent us to, plus every woman I heard from who had become a mother through DE, said that there were no regrets, that they flat-out adored their children. And that has, obviously, been my experience too. Not that DE still doesn't present some problems after you're a mom -- tell/don't tell and all that -- but I'd never go back. Never, ever.

Check out Pregnancy and parenting after DE IVF. Everybody there was very reassuring, when I was still making my decision.

Email me if you want. And get some sleep, what you doing posting at five in the morning? *grin*

IVF Girl said...

For what it's worth, I thought I would but in my two cents...
I suffer from POF and will shortly be selecting an egg donor for our 1st IVF. I've known for years that this would be my only route, but recently I've found that women were having these tough decisions with what to do with the Embryos.

I'm not a religious person, and basically, I don't see an embryo as a baby. We plan on keeping frozen embryos long enough to have two children - hopefully a boy & a girl. Once we have our family complete, both me and my husband would love to donate any extra embryos to science. It could potentially help lots of people in the future. I don't see it as any difference to being an organ donor.

Thanks for sharing your experiences and thoughts.

Bee said...

Hi IVFGirl! That is a viewpoint I had not thought of...about embryos being like organ donation. I remember how the nurse at my fertility clinic was talking about how they look for donors who are not "bonded" with their eggs...who would consider donating genetic material akin to donating blood, bone marrow, or an organ. You're saying the same applies to embryos in your view. It's kind of like the stem cell argument. I think what I was trying to say with my post is, if you are going to create embryos with IVF...whether it's with your own gametes or someone else's...you should think AHEAD of time about your attitude regarding the embryos. It is just not something I gave enough thought to ahead of time. Thanks for posting. It's so cool how you learn about all the other viewpoints with blogging!

Anonymous said...

"3. Transfer in a way that cannot produce pregnancy"
Just wanted to comment this is how my cousin dealt with her two leftover embryos (after seven IVFs). They transferred them at the appropriate time of her monthly cycle, but she had no medicated support, and thus they did not take. My other cousins keep paying their annual bill for their two embryos. They would like to donate them, but are unable to.
(Nice to have stumbled across your blog.)

Ms. X said...

Thank you for your post. I made this decision today, and stumbled upon your blog trying to figure out what my next steps are. After years of IVF, I am blessed to have 2 children, but my last pregnancy left me unable to carry again, and I cannot afford a surrogate. Like you, I have always been opposed to abortion, so I find myself facing what seemed like an impossible position.

I actually did try to plan ahead to prevent this. When I was cycling with my second child, I tried to minimize the chances of this happening by discarding half of the eggs without fertilization, but the eggs we did fertilize did much better than we anticipated and I got pregnant on that transfer. So I find myself with these embryos and the inability to carry them. After almost 3 years of deliberation, I accepted that a compassionate transfer is the best option, but it still makes me sad. It helps to know I'm not alone. Thank you.

Bee said...

Hi Ms. X. It really is sad to say goodbye to the potential of these embryos -- I haven't had my appointment yet. I keep wishing my life were different in a way that would allow me to have another child...more money, less need to work full time. But that's focusing on the negative, instead of on the incredible blessing of these two babies that I have, and the ability to take care of them with the work I (and their father) do. Thinking of you, Ms. X.

Anonymous said...

I'm reading all your comments about embryo and the best resources for them when your finished having children. Why not give them a chance for adoption. There are plenty of people who could grow these children and love them. I have two children and would love another. However, I'm 43 and know my eggs are not going to give the best batter for the best baby. I love children and am willing to give-up my own genetics for the healthiest possible situation. We all have our own psychology this is for sure. What is right for one may not be right for another. I'm looking for the healthiest egg with the best family history to give this next child the best chance for health and longevity.

Bee said...

Well, that's the thing -- donating our embryos for adoption wasn't really a good option for us because our first baby from DE was born with spina bifida. Nobody knows for sure what causes spina bifida and we were sure that nobody would want to adopt our embryos given that risk. But I am glad that's an optionf or some people -- I considered embryo adoption as my own path to motherhood, but because I have a stepson we went with egg donation. That way ALL the kids in our house are genetically related to my husband but not to me. Situations are so individual!

Gabi said...

Bee, I really enjoyed this post. I am at the same point as you are. I have 2 beautiful children (one adopted and one through DE). I have 4 frozen embryo and now the decision has to be made. I have been putting it off but the time has come. My DE son is now 2 1/5 years old and I am 41 years old.

The decision is tough and is made with great thought. Whatever decision you made - it is the right one and don't look back or second guess.

good luck and congratulations on your 2 girls

Chickenpig said...

I am in the same position as you right now. My husband and I have twins conceived after 4 rounds of IVF, and after they were about 18 months I really wanted to have another child. We had two embryos still in storage, so we figured "what the heck"...if it worked it worked, and if it didn't, we would have used the embryos. Well, I become pregnant, but it was only a chemical pregnancy, and it just made me want to have another baby all the more. Our insurance was about to run out, so it was do or die time. Thankfully, we became pregnant with our daughter, but now we have 4 more embryos. At first, when we started IVF 8 years ago, I was committed to donating them to science. But now that I have children that were once just frozen embryos (the twins) I am finding it terribly hard to think of the embryos as anything but potential children. The amount of money it costs to store those embryos is daunting, but I am still stuck. The compassionate disposal method sounds intriguing, but I have a very good success rate (at least since my fibroid was removed) and the idea of getting knocked up w quads is frightening to say the least. Thank you for a thoughtful post on the subject.

Bee said...

At my clinic, compassionate transfer is done at a time in your cycle when you really cannot support a pregnancy -- like 5 days after your last AF, as soon as you are not bleeding. And no drug support. So there's really no chance of implantaton. That's not to say that I didn't hope... It was like infertility, reaching out to slap me upside the head, one more time! But my darlings are worth it all.

Kim said...

thank you for your thoughtful post on the tough decisions faced by those of us who have had children through ivf and now wonder what to do with those precious embryos. DH and I are struggling through this right now. We have looked at the miracles waiting site and also thought about trying again with our 2 remaining embryos. Wow. It's a tough one when you think your done but you look at your child and think about the possible sibling(s). I have also wondered about doing a "natural cycle" as part of my deal is not wanting to face the shots again but knowing this natural cycle has not nearly the chance at success.
whatever happens it was so comforting to read your post. Thank you again!

Anonymous said...

I'm 57 and have sons 32, 18 and 11. First from former marriage, second from my dh and me, third from late dh and and anonymous egg donation. I carried all 3 pregnancies (FET with #3).

My husband, 12 yrs younger than I, died when our youngest was just 9 mo. old. We still have 9 frozen embryos. Since my dh was adopted and donor eggs used, all 3 boys are just 1/2 brothers at best. I keep paying to store the embryos because I don't feel comfortable NOT keeping them. What if the youngest son needs a closer relative organ, stem cells, etc.? Originally we'd planned to use 'em all - hopefully to have lots of babies. IVF worked on the first cycle, and now the 9 still are unused. I'm too old - plus widowed - to use them myself. So, I continue to pay to store, and have written in my will to discard upon my demise unless one of the boys wants to use 'em.

Anonymous said...

I'm likewise trying to balance my options. Is anyone aware how much compassionate transfer costs? In advance, thank you all!

Bee said...

At our clinic, it was $500 to do compassionate transfer (labwork plus office visit). Seemed a bit much to me, but I suppose that's a typical sticker price for a specialist and there's no insurance coverage for compassionate transfer. Good luck with your decision.

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Anonymous said...

I am the mother of a child conceived via a donor egg as well as a child conceived naturally. From the moment I heard the words "you're pregnant", I have not felt any differently about my two children. They are both mine and I love them just the same. And every day I say a special prayer of thanks for the woman who donated the egg that made my second child possible. I also wanted to share a "wish I had known then what I know now" aspect that I have not seen discussed. You see I did consider what would happen to any "leftover" embryo and wanted very much to avoid that. But I had no idea how much more strongly I would feel about embryo disposition until now. Before the cycle I asked the embryologist and IVF specialists in the practice about "the odds" and how many eggs would need to be fertilized for the best chance of success, etc. I wanted very much to freeze as many UNfertilized eggs as possible. I was willing to take the chance for fertilizing fewer eggs than we ended up fertilizing. And now I wished I had spoken up even more loudly and screamed "one at a time". We did freeze three unfertilized eggs, which I have since donated back to the clinic to offer to another recipient. But every day it haunts me about the other four -- two embryos that weren't "freezeable quality" and the two that are frozen. I had no idea how strongly (and differently) I would feel AFTER having a child via DE IVF about those embryos. I sooooo wish that I had screamed "freeze the eggs and fertilize them one at a time" so I wouldn't be faced with what I'm feeling now. Talk to your clinic. Explore all the options.

Anonymous said...

I am so glad to find this blog! I have twin girls conceived via egg donation. It is the best thing I have ever done. After 5 long years of fertility treatment, including 2 IVF's and 2 egg donor cycles(and countless other invasive procedures), we finally had success! We had 7 embryo's left. After thinking carefully about all the options, we decided to donate them to the embryo donation program. We were kind of on the fence about it, but when I heard that people seeking embryos have a 3-5 year wait, we felt like it was the right thing to do for us. I just could relate. Our girls are amazing and if we could bring that joy to another family we wanted to do it. It is such a personal decision, and no choice is wrong. After thinking back to researching adoption earlier on, and we heard how long it took (which I just fell to tears when I heArd it was 2 + years for international) I could relate to that long time frame. I put myself in the "embryo seekers" shoes and we just felt like we were going to bring joy to someone else. So that is how we decided to go that route.

Anyway i can't wait to read more of your blog and others posts about their experiences! I especially love the video you just posted with allegra. I am fully prepared to tell our girls early on, and she gave me some insight on how to go about it. Thank you!

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Anonymous said...

awesome, sensitive and helpful. we have not done DE but considering it and this definitely was an aspect i was wondering about. thank you for posting.

Anonymous said...

beautiful, helpful. thanks for posting.

Yasmyn said...

Your blog is amazing and this post was so thoughtful and insightful.

I'm about to become an egg donor. I really hope I can help a special couple have the baby/babies(?!) they want so dearly :)

Thank you for this blog.

Anonymous said...

I can understand the women realizing after they have children that a difficult decision needs to be made regarding extra embryos. It makes sense that these thoughts would not come up in depth until later. Because in the beginning, they want to be parents so much and that is their #1 priority, and it is so difficult. But, while I understand this in the women, I don't understand why their medical providers don't provide more foresight into future difficult decisions regarding these procedures? After all, the provider sees this all the time. And, informing the woman ahead of time about possible dilemmas down the road might affect her earlier choices. Who benefits from avoidant behavior regarding the production of surplus embryos? Do the clinics profit? Do the doctors hope the women will have extras without too much critical thought? A woman should be fully informed of all aspects of the timeline of difficult decisions, expenses, etc... regarding the whole medical cycle, which can go on for years. Reading these blogs, I can't believe doctors didn't inform these women and anticipate and prepare them for future emotional decisions. I don't think that regular medical care is handled that lacksidaisically!

Anonymous said...

I'm single and older (42), and IUI isn't working. I likely will have to use DE with DS to conceive. I looked into adoption as my first option actually, but the reality out there for singles trying to adopt is pretty disheartening. Unless you're willing & able to take on a special needs child who is older (not an infant), you're pretty much out of luck. It would be wonderful to adopt such a child in need, but the logic with these adoption agencies is backwards; a single woman often has even less financial resources and available time (since she can never be a stay-at-home mommy) to devote to a child with special needs. So now I'm looking into using donor eggs, but DE IVF comes with a hefty pricetag, and I had been hoping that embryo donation would be more prevalent at the many fertility clinics around the U.S. What amazes me is that so many couples who have more embryos frozen that they'll never use won't consider donating the embryos or finding a family for embryo adoption. I mean, some young lady donated her eggs to make their families possible. Donating the embryos to another is really paying it forward, isn't it?

Anonymous said...

I'm having an issue with what to do with my 3 extra embryos, as well. I was blessed with fraternal twin girls a year and a half ago though IVF. I do feel that my family is complete, but I cannot consent to any of the options available to me. It's horrible. I wish they would have just frozen unfertilized eggs rather than full-on embryos. The "extra" 3 are my babies- they're just stuck in limbo. I read a comment above saying someone transferred the extras at the right time, but without the meds. That is a wonderful idea and I think the only one I'd be at least semi-comfortable with.