Against all odds, at any cost

the cruel and contradictory world of In Vitro Fertilization


At one time, a time I consider with the distant familiarity of a dream, everything was going according to plan. Graduate college. Get a job. Get married. Buy a house. Rescue a dog (two actually). Have kids.

Have kids. Start a family. Light a cigar, if that’s your thing. Hold your newborn miracle in your hands, give your parents the gift of grandchildren, and establish your legacy in this world. Because what else is there, really? But I’m getting ahead of myself.

My wife and I cannot, without medical intervention (or so far even with), conceive children. We learned this after three years of marriage and after a year of trying to get pregnant naturally. My reproductive system has some unknown, undiagnosable defect that prevents it from making sperm of sufficient quantity and quality to impregnate my wife. We were told early on that the only way we would ever conceive biological children together is through In Vitro Fertilization (IVF).

We had discussed these aspects of family planning during premarital counseling, a condition of the Catholic Church’s endorsement of our marriage. We were asked to discuss questions such as, do you want children? What are your feelings about adoption? What would you do if one of you is incapable of having children? These are easy questions to consider in the abstract. In my mind at the time we would always just adopt; there are so many deserving children without deserving parents, what other choice is there? The Catholic church does not condone IVF, because the process inevitably generates embryos that do not survive or are not suitable for transfer and are discarded. If the church ever changes this position and would like to add to their premarital questionnaire accordingly, here are some more realistic questions that were left out. What are you willing to endure in order to have children together? How much discomfort? Pain? Emotional torment? Financial strain? How long can you endure these things before giving up? And will your relationship survive them? Put simply, and in the fullest of every sense of the expression: do you desire children at any cost?

Hope

In the beginning there was hope to the point of certainty. From our layperson perspective it was just all so clear. I don’t manufacture enough sperm to make the apparently difficult journey from the cervix to the uterus. What’s a little swimmer to do? Squirt on into a specimen cup where the nice doctor will pluck you away to unite you with the egg of your dreams. In fact, you don’t even have to squiggle yourself into the egg like in the cartoon they show in middle school health class. The embryologist will inject you right on into the egg in a procedure called ICSI. What could go wrong?

This naive understanding was perpetuated by our first IVF provider who, in retrospect, primarily communicated with us in cheerful, patronizing euphemisms and only passed on positive feedback when in fact there was much more going on . During an IVF cycle the woman first goes on birth control for a period of time, to suppress egg growth. Once the stimulation phase begins, birth control is stopped and daily injections are administered to stimulate the simultaneous growth of many eggs. During stimulation, monitoring occurs every-other-day including blood draws to check hormone levels and vaginal ultrasounds to ensure individual egg development is on track. This protocol floods the woman’s body with hormones that drive many eggs to develop instead of the normal one per cycle, causing the ovaries growing much larger in size then they would normally. In their enlarged state, the ovaries could accidentally twist over inside the body and cut off their blood supply, a serious condition called ovarian torsion; to reduce this risk the woman is placed on activity restriction. Another injection called an antagonist is added to the protocol to slow things down and prevent premature ovulation (if the eggs are released before they are surgically retrieved by the doctor, they are lost). Stimulation lasts about ten days and the main risk during this time (other than ovarian torsion) is Ovarian Hyperstimulation Syndrome (OHSS), which is a life-threatening runaway of this hormone-driven process.

During the stimulation phase of our first cycle, we were repeatedly told by the doctor that everything was on track. Egg development was good, hormone levels were good, and my wife’s vitals were good. This was in spite of the fact that my wife did not feel good at all. Besides the discomfort of three injections daily, over-sized and tender ovaries, and a blood draw and lengthy vaginal ultrasound every other day; she had developed severe nausea and could barely eat. The clinic ensured us that this was food poisoning and would pass. We were skeptical because my wife, already a very plain eater, had not exactly been in the mood for exotic foods that week. Still, we threw away the peanut butter just in case and pressed on. We later learned that my wife’s prescribed hormone doses were high even for treating female factor infertility. Our issue is male factor, only so she should have been treated more like a healthy egg donor, at much lower doses. Therefore her hormone levels were much higher than the protocol normally targets. Not only was this likely the source of her nausea and severe discomfort, it turns out that the high levels of antagonist hormones, required to arrest the process set in motion by the excessive stimulation, can also be detrimental to egg quality. Throughout our first cycle we remained ignorant of these factors. We were blissfully and immensely hopeful, buoyed by the positive feedback from our doctor and the ever chipper staff of nurses and receptionist cheerleaders.

Evaporated

I will always remember a sobering moment that occurred during our extensive preliminary screening, before we even started our first cycle. My wife was upset after the ‘baseline’ ultrasound performed to ensure that the uterus is free of defects before embarking down the difficult road of IVF. She had always imagined that her first ultrasound would be to see a baby’s heartbeat within her. It was the first step in the long journey of grieving the life we had envisioned, and acknowledging the cards we’ve been dealt.

After stimulation runs its course and eggs measure sufficiently mature, ovulation is triggered by another injection and the eggs are surgically retrieved. This is done under general anesthesia and includes a painful, non-trivial recovery. A sperm sample is collected and the embryology lab performs the fertilization of the retrieved eggs. They are monitored and graded by the lab and can be transferred on “day 3" or “day 5", the third and fifth days after fertilization, respectively. Day 5 transfers are statistically the most successful because the healthiest fertilized embryos can survive five days in the incubator. However if the embryos grade poorly and the outlook is not good for survival to day 5, a transfer can be performed on day 3.

After the retrieval, we were overjoyed to learn that 31 eggs had been retrieved. In our minds everything was going just as they had told us to expect. Our path to live birth, frozen embryos with which to conceive siblings, and the realization of our family plan was all but certain; we were back on track. We started to get nervous the next day when we learned that only 11 of our eggs had fertilized in the lab, an extremely poor fertilization rate. Our nervousness quickly gave way to panic as the quality and quantity of our embryos began to degrade precipitously over the next few days. To the clinic this was just part of the process, one of several statistically significant possible outcomes. To us, our family and future were slipping through our fingers. One embryo at a time we mourned the loss of this dream as a cruel reality set in. Finally on the afternoon of day 2, with only two embryos matured to transfer quality, we discussed our the situation with the doctor and planned a day 3 transfer. We transferred both embryos the next day. No remaining embryos survived to be frozen.

We were scared, but the doctor was confident so we tried to be confident as well. The embryos were not perfect quality, but embryo quality is an imperfect, subjective measure. The doctor had seen good embryos fail and bad embryos succeed. Really, we were told, really it comes down to luck of the draw. And we had transferred two, surely one of them would take! He felt good about this outcome. At the conclusion of our “two week wait” — the two weeks between embryo transfer and detectable pregnancy hormone — it was a “Big Fat Positive”. We looked at each other with joy and disbelief; we were pregnant.

I don’t remember the next two weeks very well, probably because they are not very important. Based on hormone levels, the lab thought our pregnancy was a singleton. I remember telling the good news to the few family members that knew we were doing a cycle. I remember knowing smiles during the day and cozy late night discussions about preparing the nursery. I remember naming our baby a silly name, meant to last until we could find a deserving one. I remember my wife sobbing, lying prone on the examination table, as the doctor informed us that we were no longer pregnant.

Typically a baby’s heartbeat can be detected at six and a half weeks. We had gone in for our 6.5 week ultrasound — hands held, eyes locked on the monitor, watching and waiting to see our baby’s heart beat for the first time. Instead we saw nothing, not even a fetus. The image on the screen appeared no different than any other of the scores of ultrasounds my wife had already endured; no more to be seen than the first ultrasound three months prior. With no explanation, no cause, the pregnancy was gone.

The basic objective of IVF is a live birth. An ancillary objective is to freeze unused embryos for future siblings. Our first cycle resulted in zero live births, and zero frozen embryos. A baby we had named and loved had, in our minds, evaporated into thin air. We had failed, and we were heartbroken.

Life

We learned a lot about ourselves during our first IVF cycle. During our second cycle we learned a lot about IVF. We changed providers to a doctor with a strong belief in patient education. We redoubled our commitment to attending a support group on a regular basis. We reviewed the medical and lab notes from our first cycle with our new doctor and mapped out the changes that would hopefully lead to success next time around, including much lower hormone doses. We studied IVF success rates. The 2012 live birth rate for IVF clinics in the U.S. was only about 40% for all diagnoses, and slightly higher at about 45% for male factor. Clearly just with this one metric, you can see that our confidence during our first cycle was misguided. If you take this 45% likelihood as the model for our success rate, the probability that we would succeed within two tries is around 69%. However, given the poor survivability of our embryos during our first cycle we knew that this ‘general’ population of IVF results was not a good model for us; in fact our chances were probably much worse because individual IVF outcomes tend to be predictive. In other words, our most likely outcome was a repeat of our first cycle. Our hope was that the poor outcome of our first cycle was primarily due to inappropriate hormone doses, with the implication that if we got the prescriptions right we could improve the outcome. So we did it again.

I work in the aerospace industry and a colleague of mine recently asked me to define risk. It’s not quite the dictionary definition, but I like to think of risk as the potential for a negative consequence. I think of this ‘risk potential’ like electricity. If a small amount of potential builds and you are a little careless, maybe you get a little shock. But when an infertile couple is trying to conceive a child, their risk calculus is on a scale that is truly dramatic. Against this risk they balance everything they’ve built in their lives up to this point, their entire future, their children’s future, and generations beyond. What would you sacrifice, what would you be willing to risk, with all of this in the balance? When risk builds up on this grand of a scale and the potential becomes too great — lightening strikes. This is what I think happened to us during our second IVF cycle. Against the odds, we went down a path of incredible physical, emotional, and financial risk to try to achieve our dream of having a family.

Again, we endured the IVF protocol. Again we performed the injections, blood draws, and ultrasounds. Again we watched in dismay as our fertilized embryos stopped growing one after another. We transferred two embryos, this time on day 5. Again we became pregnant, with no frozen embryos remaining. For almost every metric that is used to characterize an IVF cycle, our second cycle mirrored our first for the first six weeks. The one thing that was different during our second IVF cycle was our shaken confidence. Sometimes we forgot and started to get caught up in the dream, but for the most part our days were filled with tension and fear of the unknown. Everything had unfolded precisely as during our first IVF cycle, so why should the outcome be any different? No longer cozy and hopeful, our late night conversations were restrained and cautious. For surely if we spoke of happy things they would not come to pass, just as any fears spoken aloud would certainly be realized.

Finally the date of our 6.5 week ultrasound arrived. We held our breaths and each others’ hands as we waited for the image to come into focus. When you have made life, you expect something dramatic to happen when it is revealed to you. But there was no thunderclap, no chorus. She was just there, our baby girl growing in my wife’s tummy. After all this time, and all we had been through; she was really there. A few pixels fluttered on the monitor to let us know her heart was beating, as was mine. Our doctor smiled and congratulated us, and we smiled at each other. I don’t have the words to describe the happiness I felt that day, or the love that I felt for my wife and our unborn child.

Lost

One week goes by. My wife, who is normally extremely resilient and self-sufficient, calls me during my morning commute and asks that I return home immediately. When I arrive she is experience terrible abdominal pain, barely able to stand. My wife thinks that perhaps she was overreacting to normal pregnancy symptoms, but something is clearly not right. We take her to see our doctor who performs an ultrasound. First, the baby. Everything is good. Heartbeat, size, uterine lining; all normal. I remember tentatively asking, ‘are we sure the second embryo didn’t implant?’. We had transferred two embryos, but only one had implanted that we knew of. If the second had implanted somewhere outside the uterus, this would be a serious condition (life threatening if untreated) and would require immediate surgery.

The doctor considers this possibility and widens the ultrasound search to the fallopian tubes. There, in my wife’s tube, we find a second living, implanted fetus. Stunned, we watch its heart beat.

The danger in this situation, called an ectopic pregnancy, is that the fallopian tube can burst, resulting in serious internal bleeding. The ectopic pregnancy has a zero percent chance of live birth as pregnancy cannot be sustained outside the uterus. It was serious enough that following the ultrasound we were sent to the ER for immediate preparation for surgery. If the ectopic pregnancy had been found earlier and was our only pregnancy, we could have taken medication to terminate the pregnancy. Because the pregnancy was heterotopic, i.e. both ectopic and intrauterine, and because we did not want to harm the viable intrauterine fetus, my wife underwent laparoscopic surgery to remove the entire affected fallopian tube. The tube had already begin to stretch and tear due to the ectopic pregnancy; they removed a quarter cup of internal bleeding during the surgery. That day I learned that I do not often experience serious fear. I know this because sitting in the waiting room of the surgery pavilion, I truly felt fear. I felt grave fear for my wife’s well being, and for the well being of our viable pregnancy. It was an unfamiliar, devastating feeling — and one I hope that I do not have to experience again any time soon. Thankfully, my wife completed surgery without complications. At the end of an exhausting day, I cared for my wife in our home and we reflected on what it meant to gain and lose a child in a single day.

Two days later we had an ultrasound to check the health of the remaining, presumably healthy, intrauterine pregnancy. The heartbeat and size were good for my wife’s 8 weeks of pregnancy, and the doctors thought we were in the clear as far as risk from the recent surgery. This must have been around the time our intrauterine pregnancy stopped growing . Our next ultrasound, at the 10 week mark, revealed a heart that no longer beat and a fetus that still measured only 8 weeks; it had stopped growing two weeks prior. For the second time we grieved the loss of our child and our future amongst strangers in a cold, tiled room. Again we had failed, and again we were heartbroken.

Science

Medical science has failed us. Clearly, it has not enabled us to conceive children despite tens of thousands of dollars of medical tests, procedures, supplies, and prescriptions. There is no aspect of this more discouraging or desperate than the fact that after one year, two IVF cycles, and three losses, we are exactly no closer to building our family than when we started. Far short of achieving this goal, medical science even failed to protect our bodily integrity in our efforts to do so. For all that we’ve been through, we can really only claim backwards progress. As a direct result of our medical interventions, my wife now only has a single fallopian tube rather than two. Ironically, she now has lower chances of conceiving naturally than when we started.

Another failing is that even after we became better advocates for our own patient education and became more informed, the science of fertility and IVF does not provide a couple with the tools to effectively manage risk. No doctor or laboratory technician can tell me our specific likelihood of success, given our specific fertility scenario. It simply cannot be determined using today’s technology. We actually were told by our first IVF provider that our first cycle had a 50/50 chance of live birth, but it was in the context of winks and nods. Every time we discussed likelihoods we were given the litany of reasons to believe we would succeed.

On top of this uncertainty and mis-characterization, even when circumstances turned and the likelihood of success was near zero the doctors found this impossible to communicate. They simply will not tell you that you have no shot. They default to anecdotes instead of data, claiming that they’ve seen any number of unlikely outcomes so why couldn’t it happen for you as well? You’ve come so far and been through so much, don’t throw it all away! If you just stay positive (and keep on writing checks), anything could happen. So in the absence of data to drive our decision making, the only thing left is hope. Hope is a great and useful thing when you don’t have any moves left, but it really is not a rational or effective way to determine and manage your physical, emotional, and financial risks and investments. Unlike reason, hope only ever has one answer: yes.

Fiction

So what of our premarital questionnaire from so long ago? Why have we shunned adoption and punished ourselves so severely in the conceited pursuit of biological children? Well it turns out that private adoption can be even more expensive than IVF without any greater chances of success. In Washington State for example, consent to adoption cannot be sanctioned by the courts until 48 hours after birth. This means that the birth mother has until 48 hours after birth to change her mind. In this circumstance, there are no refunds for the legal fees, medical fees, and other support provided to the birth mother by the adoptive parents. No one replaces the time lost waiting for someone else’s pregnancy to unfold. Just like our IVF cycles, private adoption has the very real potential to bring us only wasted time, emotional loss, and financial loss.

There also exist programs like foster-to-adopt where the financial investment required is much less, but the emotional risk is much greater. With foster-to-adopt you are dealing with a population that has been removed from their birth homes due to abuse or neglect. The child is placed in foster care while the birth home is considered unsuitable. If the birth family’s parental rights are terminated and the child is ‘legally free’, the foster placement can become a permanent legal adoption. However the state’s priority is reunification with the birth parents if the home environment can be made safe and suitable. Reunification is the simplest legal solution and is correlated with the best overall outcomes for the children. In these cases the foster parents can have children placed in their home for up to two years, and still have the children returned to their birth homes if the parents get their act together before rights are terminated.

So it turns out, being able to just go out and easily adopt a child is really a fiction. Not that it is not possible to do, but for us adoption is fraught with many of the same considerations as IVF; the process may fail and time is lost, the process may fail and you may get hurt, the process is expensive. And it’s not that we don’t want to care for someone else’s child. We would absolutely love any child as our own if we could just be confident that they will actually stay part of our family. The lost time is the hardest part. We’ve spent one year trying on our own, and another year on failed medical interventions. Looking forward, the six months that could be wasted on a birth mother that changes her mind late in the game, the two years we could spend with foster children in our home just to have them returned to their birth families — this is all time that we subtract from the number of years that we will get to spend with our eventual ‘forever’ family; whatever it looks like. Our start keeps getting pushed later, but the ultimate deadline just stays firm.

Future

I don’t really have an appropriate closing for this essay because our story is not yet finished and we certainly don’t have closure ourselves. We have a third IVF cycle scheduled but do not know if we will go through with it. Again the doctors have found the one tweak to the protocol that could possibly push the odds in our favor. They tell us you only have to get lucky once. I can’t convince myself that the likelihood of success is worth the risk to my wife’s physical health or to our emotional health, but we don’t know if we can live with ourselves if we don’t give it just one more shot. Also, we are close to completing our foster-to-adopt license. If we do go through with IVF and get pregnant, it will be around the same time that we will start being offered foster placements. We are scared to death of becoming attached to a foster child in our care and then losing them, but we have decided that this risk is worth it. Hopefully we can keep it in perspective that we want what is best for the child and if their birth home is safe, it is the best place for them. Ultimately I think that even if our foster children are reunified with their birth families, it will still be a rewarding process. Other options we’ve considered are donor sperm to see if at least my wife can have biological children, or donor egg to see if my wife’s egg quality is somehow contributing to our poor IVF outcomes. Whatever comes next, it will not be easy. With all the uncertainty we face however, I can say this: we will have a family one day. Our children may be both, one, or none of ours biologically, and our family may not look like yours, but we will have a family. Against all odds, we will do it. And if one day in the future someone asks me if my family is worth any cost — I’ll know the answer. Yes. It always was.