Wednesday, February 29, 2012

Ponderances of Trust

I originally wrote this post in August of 2008, just a few months after our son, Isaac, joined our family via adoption.

To trust or not to trust.

I suppose I should follow that by saying: "That is the question."

In fear of being incredibly cliche', I'll refrain.

But as I have moved throughout a rainy Saturday and into Sunday (which turned out not to be nearly as rainy as everyone predicted), and as I caught up at work and attempted to entertain a dog without a yard, Frisbee, or anything outside my living room, my thoughts were on trust. I had a lot of free time, as I often do, when JB is on call.

I think these thoughts stemmed from a conversation I had held the evening prior with a friend. And then it stretched back into a discussion JB and I had just a few days prior to that. A discussion on what it means to trust the Lord and how easy it is to say, "Trust Him," when your own lack of trust finally paid off.

I spent five years arguing with God and refusing to trust Him, because, well, He was not doing what He was supposed to do! I'd sit in front of the Bible I was unable to read each morning and tell Him everything. I'd tell Him that I thought He was unfair. I'd tell Him that I thought He forgot about me. I'd tell Him that I could not possibly take one more shot, one more appointment, one more unanswered prayer. "How many people need to pray?" I asked Him all too many times. I'd sob. I'd beg. I'd yell. I'd give up.

I wouldn't call anything I did during those days, trust.

In fact, I can honestly say that my trust for the Lord didn't enter into the picture until months after we moved to Florida. It was after our fourth failed IVF, when JB was working horrid hours at the hospital, and I was attempting to train our fifteen pounds of spotted fur not to pee in the kitchen or chew the baseboards, that I began to finally give up. I think giving up is a key ingredient in trust. It wasn't until I finally threw my hands up in despair and said I could no longer do it or seek it or try it, that I began to trust God. In a way what I did was give up on the idea of being a mom. In another way what I did was decide to let God decide what was best for my life. I didn't know if I would like the decision He made. But I was done trying to make my own.

I would not call that trust perfect. There were days that I still broke down. There were days that I still questioned His decisions. There were days that I still felt sorry for myself and had a good cry. I still could not attend first birthday parties or baby showers. I still had trouble with pregnancy announcements and bulging bellies. We kept finding other fun things to do on Mother's Day instead of going to church. In fact, it was one month after Isaac was born, when I was in fact, unknowingly pregnant, that I had yet another good cry, lying in the bed next to JB one night. It had been a long time since I had cried so hard that I had trouble lying down and had to sit up to make sure the tears didn't choke me. I think it took JB by surprise a little bit to see me back in that place. We were so happy with Isaac. We truly felt our lives were complete. And yet there was a part of me that still felt sad that we were infertile (even though we actually no longer were). And another part of me that was still very afraid of having to do IVF again someday. It was a lot easier to trust when I wasn't doing a treatment cycle. How could I trust when constantly reminded -- a necessary part of infertility treatments?

Our church has begun a series on parenting. Had it come just one year ago, I know I'd be taking a short siesta from services. The guest speaker, on the first day of the series, encouraged us not to stop coming if we weren't currently parents -- telling us that we could still get something out of the sermon. I looked at JB, and we shared a knowing glance. How many times had we been told that before? How many times had I attended an event structured for mothers when I wasn't one? On the drive over I'd try to convince myself with the thought that I should be healthy enough to gleam something from the speaker's words despite my own pain. Then I'd have a good cry in the bathroom during a break, put on a happy face, and try all over again.

In the midst of our infertility journey, I finally gave up on doing that. It wasn't that I couldn't take something from the words. It was that the words were too painful to hear. Parents sat around nodding their heads or emitting a knowing chuckle. I just sat there wishing that I had a nod to give. The emotions would come running back. The feelings would come swarming over me, even if I had thought they were far away. I suppose they were never very far at all.

Don't get me wrong. I think a series on parenting is a great idea. I think I'll learn a lot from it, especially considering I've avoided these sermons for so long. But on the way home that morning I told JB that my heart hurt for the people who hurt during that discussion. As always, I thought of people who weren't holding an Isaac during the sermon. And especially those people who weren't sitting next to a John. Not seeing your dreams come true is a painful reality, and my heart hurt because now my dreams were coming true while others still waited.

I find it important, when sharing the story of our family to make sure that I don't tell people that if they trust God, everything will work out okay. For some people this may be true in a matter of days or weeks or months. For me, it was a matter of years. For Abraham and Sarah in then New Testament, it was a matter of decades. And for others, there dream may never come true on this Earth.

Instead I tell people that trust is hard. It is painful. And it can take a very long time to learn. In my case, I don't think I ever achieved full trust prior to Isaac's arrival. I like to believe I gained better trust. I like to believe I was getting there. But I hadn't arrived. I am not sure you ever actually do. All you can do is to try each day to remember that He does have a plan. It may make no sense. It may make sense in the future as I believe our struggles now do. But it many not make sense until we stand before our Heavenly Father someday. We may not ever see his plan with our earthly eyes.

My prayer today is that I am able to remember, someday in the future when I am faced with obstacles that impact my trust again, this period of my life. I hope you are able to do the same. I hope you are able to look at our story and see that God is present. In our case we can all see it now. That may not be the case for future events in my life or in your's. But He is there. And He does care.

I pray that if you are someone today who is hurting, you'll come to find just a bit more trust today. Don't try to get to 100%. Just try to get 1% better than you were yesterday. Just try to remember a little bit more that He does love you. He is hurting with you. And He does have your best interest in mind.

If this isn't you who are hurting, think of someone else who is. Make it a point to think of them during a painful sermon. Just having people telling me that my grief was legitimate helped me so much. People don't think I am stupid! It's okay that I am sad. They don't understand but they empathize. This made me feel so much better. Think of someone who is alone or grieving a loss the next time you are nodding in agreement with the pastor in church or celebrating an event with your family. A hug. An email. An invitation to dinner. We need each other in this world. I don't know what I would have done without my faithful friends during my darkest hours -- friends that trusted for me when I had no more trust to give.

God loves you. He remembers you. He has a plan.

Trust in the Lord with all your heart and lean not onto your own understanding. In all your ways acknowledge Him, and He shall direct your paths.

Thursday, February 9, 2012

IVF's Moral Dilemmas

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 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.

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.

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. (The Gosselins are one of the most known examples.) 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. Octamom Nadya Suleman fits into this category. I strongly encourage people to find a physician who shares or at least respects your viewpoint so as to prevent heartbreaking choices or consequences.

In Kate Gosselin'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.

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.

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.

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!