Monday, January 26, 2009

IVF's Moral Dilemma

On Sunday, I received another question on my blog. Folks, I love these questions! Please keep 'em coming! I have been wanting to spend some time blogging about this topic and have just put it off for one reason or another. Hearing a question really encourages me to get cracking at putting all my thoughts down on "paper."

So here was the question I received yesterday on the blog:

I know based on your upcoming arrival that this may not be the best time to ask, we'll certainly be patient! I found your blog through a friend's blog and it has been incredibly encouraging as my husband & I struggle with infertility. We're now discussing how far we will go down the fertility pathway. We're curious as to how you handled the ethical, biblical perspective as you approached IVF. There is obviously much to consider but with your experience we'd love to hear from you!

I'd like to answer this question, but I definitely want to begin with a disclaimer. What I write in the paragraphs to follow is only my opinion. This is a very deep topic with a lot of gray areas. I respectfully acknowledge that someone reading my blog may see things quite differently or may have even done things quite differently. In fact, I have very close friends and women in my support group in Minnesota who did things differently. I could not even begin to judge them. Each infertility situation is unique and requires its own set of praying and seeking the Lord's
will. Please keep this in mind as you read what I have to say.

Also, please help me out by answering my question at the end of the post. I'd like help from readers with things I left out or didn't touch on in this post so that I can make this as complete as possible.

So, without further ado . . . here goes.

* * * * *

The very beginning

I can vividly remember every detail of the day that the words "IVF" were first uttered in my direction. We were sitting in the Reproductive Endocrinologist's Office at the Mayo Clinic in Rochester, Minnesota. I never, ever, ever thought that I would be "one of those women" who had to do IVF. That was for other women. Not for me. It was completely shocking and overwhelming and upsetting all at the same time. I felt like I could not catch my breath. IVF? JB squeezed my hand in an attempt to comfort me from the news we truly thought we would never receive, but I could tell that the news was just as devastating to him as it was to me.

Not only is IVF extremely expensive, usually around $10,000 per attempt at a minimum, but it is racked with moral and ethical decisions and dilemmas. While the Catholic church unequivocally condemns any form of IVF as stepping outside of God's will for your life, most protestants, of which I am one, believe that infertility treatments and IVF is morally acceptable if done within strict limits. Where those limits actually lie is the big question.

A Diagnosis

In the two years that had preceded that visit where we first heard "IVF" come tumbling out of the nurse's mouth, we had done a myriad of other infertility treatments. I had had an MRI on my pituitary to determine why I didn't ovulate. I had had blood tests and taken shots and been tested in any and all ways the doctors could think of. JB had been tested. In the end, all they knew was that I didn't ovulate due to a condition called polycystic ovarian syndrome. While I did not have the weight gain, hair growth, and acne usually associated with the condition, I did have the absence of cycles and the pearl like follicles in my ovaries that indicated PCOS was the reason we had been unable to conceive.

Clomid

They started me on Clomid with the hopes that it would help me to ovulate. All it did was make me go crazy. To this day, JB says that Clomid was the worst drug I had to take. I don't remember that I was that difficult to live with, but JB would definitely beg to differ. Three cycles later and we were no better off.

Introduction to IUI

We then moved on to IUI (intrauterine insemination) or artificial insemination. IUI is a procedure where the sperm (either the husband's or a donor's) is injected directly into the woman with the hope that it will increase her chances of conception. In my case, I was given drugs to help produce follicles (which contain eggs) and then I would go in for the IUI procedure and take a shot to help release those follicles. Technically I could have just taken the drugs and skipped the actual IUI procedure -- just trying on our own instead. However, once you spend so much on the drugs needed to help you ovulate, the actual cost of the IUI procedure is quite minimal, and it makes sense to add it to the schedule.

Where IUI gets tricky is that you want to have a good number of follicles. A good number is usually 3 or 4. Too few and you feel your odds are incredibly low. Too many and you worry that your odds are incredibly high . . . not for success but for too much success: multiples.

Multiples

A side note here about multiples. The first time I walked into Mayo Clinic, my Doctor said to me, "Triplets are bad, triplets are bad, triplets are bad . . ." It was honestly, the very first thing he said! Now I know a few people who have had triplets, and their children are wonderful and definitely not "bad". However, my doctor's point was that in any pregnancy with triplets or higher, the chances of something being wrong with one of the children goes up incredibly. The odds of cerebral palsy, for instance, jumps by large percentages with every additional baby in utero. Mayo is therefore very cautious and attempts to prevent anything greater than twins from occurring.

We have all seen the stories on TV about families with 5, 6, 7, or even 8 babies born at once. Most of the time these occur during an IUI procedure -- where control of the number of embryos is limited. Or they occur during a cancelled IUI procedure -- where the physician will not do the IUI procedure due to the high number of follicles present, but the couple try on their own anyway. They may also occur during IVF -- especially at centers that are not cautious about the risk for multiples. I strongly encourage people to find a physician who shares or at least respects your viewpoint so as to prevent heartbreaking choices or consequences.

I just got finished reading John & Kate's book: Multiple Blessings on their brood of sextuplets. In her case, they had not seen what appeared to be 7 follicles (which hold the eggs) on ultrasound. It was only after she found out she was pregnant that they realized their count had been off. (One embryos did not survive resulting in 6 babies.) Figuring out how many are possible is not really a science. My doctor often told me it was more of an art. You have to be very careful when proceeding in order to prevent high order multiples.

Selective reduction

IUI is a difficult procedure for a couple who, like JB and myself, do not believe in "selective reduction." Selective reduction is a procedure where a doctor goes in and aborts a certain number of babies in a pregnancy which has multiple babies. Usually this is only attempted when the number of babies is 4 or greater. With 3 babies, the risks of something going wrong with the selective reduction procedure is equivalent to that of carrying triplets so it is often not attempted. But in 4 or more, doctors will advise that 2 or more of the babies are killed so the others will survive and/or have a better chance at a healthy life.

For JB and myself, this was not up for debate. We would never, no matter what, consider selective reduction. This meant that we knew we had to be very cautious when doing the IUI procedure. Too many follicles could result in too many babies and a possibly heartbreaking outcome.

Four more BFN's

We attempted the IUI procedure four times. Two times we achieved a good number of follicles (3 or 4) and we did the procedure. Both times this procedure resulted in a BFN (big fat negative). One time they scrapped my cycle altogether as I had way too many follicles. This was incredibly disappointing as I had taken all the drugs to produce the follicles only to have to stop everything and start all over again. A fourth time, they refused to the IUI procedure but told us that we could take the shot and try on our own instead. This was done "under the table" so to speak. The doctor said he would never officially admit that he had told us to take the shot. But he kept reminding us that it was in our refrigerator.

This was the first point in our infertility journey that we reached our first sort of moral crossroads. Was it smart for us to attempt to get pregnant knowing that we could possibly have as many as 5 babies, knowing that that was not safe, and knowing that it could potentially harm one of our children? We met with our good friends Dave and Lesley and had a long talk. We weighed the odds that it would work and the odds that all of the follicles would work and did decide to try on our own. In the end, we did not get pregnant. However, this crossroads was the first time where we realized that what we wanted needed to line up with what God wanted. We knew that we could not put what we selfishly wanted ahead of what was in God's commandments at any point in this infertility journey.

IVF

It was after this fourth failed attempt with IUI that the nurse asked us if we had considered IVF (invitro fertilization). I remember her saying the words, and I remember wanting her to take them back. IVF is the granddaddy of all infertility treatments. It was thing we thought we'd never have to do. And now, here we were. IVF. I had remembered lying in bed at night saying to JB, "What if we have to do IVF?" He assured me that that wouldn't happen to us. We were just dealing with my own ovulatory disorder. IUI would be all we needed. Now, here we were. Prime candidates for IVF.

I asked my doctor what he thought my odds were with success through IVF. "You," he said, patting my arm, "Are the woman IVF was made for." I was the healthy girl with no real problems other than a minor ovulatory disorder.

Our moral absolutes regarding IVF

The issue with IVF is that you aren't just injecting sperm and letting "nature do it's thing." You are creating life. My husband and I believe that life begins at the moment conception occurs. We therefore believe that we are creating life when doing IVF.

That being the case, when we decided to do IVF, we set the following guidelines for ourselves:

  • We would not rely on our own understanding. We would pray and seek the Lord's face in every decision we made.
  • We would not move forward unless both of us were 100% on the same page.
  • We would seek the opinion of others. Specifically, JB and I decided to follow the statements of Focus on the Family and the CMDA or Christian Medical and Dental Association. It was our hope that by aligning ourselves with two organizations and making sure we never stepped outside of their viewpoints, that we would be giving ourselves an extra bit of accountability. We never wanted what we wanted to move in front of what God's commandments were. We knew that with the money and pressure we could be swung into a faulty line of thinking if we didn't keep things in check. I strongly suggest that any Christian thinking of doing IVF finds an organization or two that can help guide them in their decision making.
  • We would never create an embryo (life) that we did not plan on giving a chance for life outside the womb. We therefore would limit the number of embryos that we fertilized. In our case, this most likely was the reason we had to do a second harvest for IVF. But for us, the extra money and drugs and headaches were worth it. Some people even choose to go farther and not freeze any embryos. I completely respect this decision. As one person noted in the comments of this post, the rate of survival in freezing and dethawing can be low. My husband and I came to understand through our own research that if they did not survive the freezing/thawing process, they would not survive had they been in the womb either. This is another topic that we should have done more research on, and I felt we probably "zipped" through too fast.
  • We would never contemplate selective reduction. Ever. This meant that we would be very cautious when considering how many embryos to transfer.
  • If for any reason we could not use the embryos we had created, we would (a) find a surrogate to carry the embryos for us OR (b) donate the embryos to another infertile couple. Reasons that we could not use the embryos would include my death or health.
  • None of our embryos would be discarded or used for research, no matter what. We went as far as to create an "advanced directive" that left the embryos to my brother if JB and I were to both die. We wanted to make sure these embryos were not discarded. My brother has strict directions to donate these embryos to a Christian couple who would raise our biological children for the Lord.
  • Mayo assured us that in their laboratory, they freeze before genetic transfer occurs. They therefore believe conception has not actually occurred when the freezing takes place. We decided not to believe this. If we were being overly cautious, then we were being overly cautious. We felt that we would continue with the thought that each embryo was life. If we got to heaven one day and found out that we were wrong, then so be it.

Harvest #1

IVF involves the "harvesting" of my eggs. After the eggs are harvested, they are fertilized in a test tube in a laboratory (thus the expression "test tube baby.") A select number of the fertilized embryos are then injected back into me in a process called a "transfer."

JB and I did 2 harvests and 4 transfers. For our first harvest, we decided to allow them to fertilize 12 eggs. Some couples do not have this luxury. They only manage to get a few eggs. However, in my particular case, I produced a large number of eggs when given the proper medication -- dozens actually. We therefore had to carefully contemplate how many eggs to allow the doctors to fertilize.

The doctors, of course, wanted to fertilize every single one. However, we held fast to our belief that we would only fertilize what we felt comfortable using. How did we decide on 12? For us this was based on "playing the numbers." I am having trouble recalling the exact odds that we were given, but we played with numbers on a pad of paper for days and weeks before deciding that 12 would be a good number for us. We were "banking" on approximately 10 of the embryos fertilizing, and of those 10, about 40% resulting in a successful pregnancy. This would give us approximately 4 children. That sounded about right to us.

Of course those of you following my story know that this wasn't the case at all. When they took those 12 eggs and fertilized them, to their great surprise, only 6 fertilized. They realized at this point that we were dealing with yet another infertility issue. We had a problem with sperm binding. We don't know if it was JB's fault or my fault or the fault of both of our materials put together, but either way, we only got 6 embryos. In the months and years to come, JB would insist that the problem was his just so that I would quit saying that our inability to have children was all my fault and he should go and find another wife. It was sweet of him.

Blasts

We transferred 2 of those embryos and did not achieve a successful pregnancy. In addition, 1 of those embryos was kept out longer before it was frozen. This is called a "blastocyst." Supposedly, these "blasts" have a higher rate of success. In our case, our "blast" died before it could be frozen. This is another area of moral dilemma. Some people do not believe you should allow the docs to create a blast. It was our belief that these embryos would live or die based on how good they were and that they would live or die inside or outside of me. We therefore did not have an issue with the blastocyst. If I were ever going to do IVF again, however, I would, personally, spend more time researching this particular issue. I feel this is one area we were not as knowledgeable about as we could have been.

Harvest #2

At this point we had 3 embryos left. We did a second transfer which also resulted in a negative pregnancy.

With just 1 embryo left, we decided to leave that 1 embryo frozen and do another harvest. This time we decided to fertilize 14 embryos. Twelve of them were successfully fertilized using a process called ICSI. This is where each egg is injected with a single sperm (instead of just throwing them in a tube dish together and seeing what happens.) Unfortunately, one of the blasts died this time again leaving 11 of embryos and 12 if you added our previous 1 to that batch. We transferred 2 more and did not have a successful outcome. We did one more with 3 embryos this time and did not have a successful outcome. This left 7 embryos remaining when we decided enough was enough! We currently have 7 embryos stored at Mayo Clinic in Rochester, Minnesota that we are 100% committed to returning for at some point.

Summary

It is our belief that the Lord is the creator of life. He creates follicles and sperm and eggs and embryos. Even with all the help the doctors provide, the Lord controls the final outcome. In our case, that was eleven negative results. Eleven expensive and extremely disappointing results. This is where infertility treatments are so difficult. No amount of money or prestige or power can give you a biological child. Only the Lord can do that.

We felt that morally, we needed to remember, at all times, that the Lord is the maker of life. We needed to not be selfish and put what we wanted in front of what the Lord had ordained at any point. To this day, I cannot tell you 100% that we did everything perfectly. I feel peace about our decisions, but I know that there is a chance we did something that was not morally acceptable. But we did the best we knew how to do with prayer and guidance from people and organizations we trusted.

Resources and questions

As I write this, I am not sure that I have answered all questions on this topic. I wanted to share three additional documents that helped guide us in our decision making.

Do you have a useful article? I'd love to add it to my list. Here are three articles posted in the comments during the original draft of this blog entry.

These documents have a lot of great information from the two organizations I talked about previously. They also break down the Bible's viewpoint on infertility, adoption, and artificial reproductive technology.

I wonder if any of you who have read this whole post could help me out. I'd like to make sure I was very clear about everything in this post so that I can post this on the side of my blog as a resource. What additional questions do you have after reading? Please ask away! I will then go back through the post and edit it to reflect your questions (and also answer them in the the comments section.)

Thanks to my anonymous question asker. I hope I did a good job sharing our own journey and how we attempted to stay in God's will as Christians while in the midst of a very gray and murky area. Let me know what else I need to add!

11 comments:

Baby Cronk said...

I think that together you handled very very difficult decisions gracefully, prayerfully, and with wonderful respect for life and the creator of life. I admire your strength and am so excited that in God's time, your family will be complete.
: ) Lisa

Flakymn said...

Thanks Lisa! You are great!

Lillie's mom said...

All I have to say is WOW! I also suffer from PCOS, had to go through an IUI, and I am a Christian. Your answer to the question was wonderful. Your insight is such a GREAT help to those of us who go through infertility and have children or do not have children. I know you have mentioned this on your blog before, but I hope that you do write a book. I would definitely buy it. God Bless you and your family and I hope that your bundle of joy joins you soon!

Cassandra said...

It's strange that Jon and Kate wrote that in their book; on the show they said that the doctors canceled their IUI because there were too many follicles but they went ahead on their own against medical advice. They also had a 7th fetus that did not survive, so there were at least 7 follicles if not more. I wish I didn't know so much about Jon and Kate, but I have watched far too many episodes.

One thing I would clarify is that you used the term "secondary infertility" to indicate that you had more than one cause of infertility, but generally "secondary infertility" refers to having infertility after having had a first child (whether or not there was "primary infertility" before that first child). I totally understood what you meant, but I just wanted to clarify in case a reader got confused.

As someone who has also been through clomid, injectables, IUI, and IVF, I thought everything you wrote was clear and accurate. But one thing confused me. You said, "We would never create an embryo (life) that we did not plan on giving a chance for life. We therefore would limit the number of embryos that we froze." It seems like you limited the number that you allowed them to fertilize, rather than the number that you froze -- it doesn't seem that you told them not to freeze embryos that had already been created. I'm sure I'm being nit-picky, but I know that sometimes as a reader I have hung on every word of an informative post. That's never been an issue for me, because none of my embryos have ever survived to freeze, but I can imagine someone being put on the spot about whether to freeze embryos and looking to your post for guidance.

My own moral perspective and decisions are very different from yours, but I appreciate all of the thought you put into each decision as well as this post.

Hope that baby decides to show up soon! Good luck!

Rin said...

Thank you so much! This is such a good overview of the considerations of a Christian concerning IVF!
My husband and I are preparing ourselves for IVF since a few months ago. We have peace about doing IVF, but are still deciding about the ethical part. It was awesome to read in your post almost exactly the things we found out through much reading and thinking and praying and now stand for. Discarding embryo’s, for whatever reason, is totally unacceptable to us, so we will have to limit the number of eggs fertilized. Like you, we will have to do some calculating…
We are still thinking about the freezing part. We don’t feel much at ease with it, because we are not sure embryo adoption (in case I die or cannot have children for medical reasons) is something we would like to happen. We will have to think and pray more about this. Besides this, we’ve read that during the thawing process about 50% of the embryo’s can die. So we’re not sure if freezing is acceptable if you already know that half of the embryo’s will not survive. In the Netherlands (where we are from - that's why my English is far from perfect -, but where we don't live at the moment), the pro life health insurance will cover IVF, but only if all the embryo’s are used and if none of them is frozen, because of the high amount that probably will die in the thawing process. Well, sincerely, we would love to feel free to freeze (a low number of) embryo’s and we have not decided about it.
But one thing is sure: we don’t want to do something that goes against our convictions. If this means that we will not have children, this would be a very very hard sacrifice, but conviction is conviction. I’m so very glad that you and your husband also show this position: you knew the chance to get pregnant would be bigger if you would expose all the eggs to fertilization, and it must have been tempting to agree with Mayo’s view that their embryo’s are frozen before genetic transfer occurs. But you kept faithful to your beliefs. I love this! This is the right attitude. I thank the Lord for your post.

Oh, and maybe I can share three useful articles I found on the internet:

1) http://www.legalzoom.com/legal-articles/article13748.html
2) http://www.discipleshipnetwork.com/answerpages/invitro.html
3) http://www.embryodonation.org/news/frozenout.php

Thanks again. May the Lord bless you with the birth of Elijah very soon.

Rinette said...

Sorry, the link to the second article is http://www.discipleshipnetwork.com/answerpages/invitro.html

(The comment before was posted before I had finished my name...)

Flakymn said...

Cassandra and Rin,

THANK YOU for your comments. They are all spot on and I have edited the post to reflect them.

Cassandra, in the case of the two things you saw, they were just fast typos -- you picked them right up!

Thanks for the articles Rin! Going to look at them right now.

Tara said...

very informative post!

Blackman Blog said...

WOW...VERY IMFORMATIVE!
THANKS FOR SHARING SO MUCH! :)

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