Tuesday, April 21, 2015

Defining the Beast: What is Infertility?



Infertility is lived in many forms. We have to understand and define what it is and what it isn't before we can build context for how to deal with it. In the narrowest of contexts, the mainstream medical definition reads as follows, regardless of the source you use for the definition:

But what about recurring miscarriage? And what about stillbirth? And what about the obvious glaring fact that the Catholic view of fertility only exists in the context of a man and woman together...so there isn't any female or male infertility separate from the couple's infertility? As you can see, mainstream medical definitions do nothing to underscore the broader religious context. And the narrow view used to define infertility medically has actually has limited our current understanding of what the cross truly is. 

Infertile couples live in a perpetual state of longing for children.

We can agree as Christians that the primary desire of every couple is to be fruitful. Accepting children lovingly from God can be a big part of that fruitfulness, but it's not the primary means by which couples unite themselves to each other. As Catholics, we believe that marriage is both unitive and procreative. That means there will be people called to many different forms of unitive love and procreative love. And the ways in which that loves manifests will be rich and diverse.

But let's talk about how most people understand entering into marriage: as a calling to begin family life. When we look at the growth of our family in marriage, it's a natural want to include children in that growth. For many couples, the children don't come. Or the conception happens and then a miscarriage follows. Or a pregnancy is achieved and is relatively uneventful and then the child dies right before birth. Or worse, the child is born and dies shortly thereafter. The common anguish shared amongst all of these different parents in these scenarios is that they longed for their shared love to grow their family in a tangible way. Being denied the ability to grow your family cuts at the very heart of our human urges and needs. Inside every single person, regardless of whether are in touch with this desire or not, is a desire to be fruitful. Wanting children is one natural (and very common) manifestation of fruitfulness in marriage.

It's too "simple" to say that infertility only affects the couples who don't conceive in a year. We leave out the immense pain of the couple who had a child, but then struggles to ever conceive again. In fact, we also leave out the people who were born with genetic conditions that left them without the capacity to procreate at all. And we leave out the couples who can't conceive and can't adopt. Just adopt, they say. Not everyone can. Imagine being infertile and being unable to qualify for adoption. The pain and anguish! (We'll ignore the fact that adoption is a separate calling right now...but rest assured we will revisit that topic this week).

If we simply defined infertility using parameters that include everyone who struggles to get and keep a baby in their arms, we would begin to understand the complicated topic of infertility much better. And we would be reaching our arms around the topic much more completely than by using the mainstream medical definition. We'd also be the only group of people including those couples who met, fell in love, and married later in life...which is a group of people that the medical definition entirely excludes.

And at the end of the day, isn't that what the entire topic of infertility is about? Including the people that feel excluded and left wanting! Defining the beast by measuring its reach. Qualifying the longing to quantify the prevalence.

Infertility, at its core, is about living in the longing and being denied the ability to bring about tangible growth from the love you share with your spouse.

....and that's something that requires grieving to process. So without further ado, let's define the beast and let's include everyone who ought to be inside the definition of infertility:




There are a couple of different ways to define primary infertility. We believe that it's more than just the obvious. And that's mostly because we live in the grey area between this category and the next few we'll be defining.

Primary infertility definitely describes the couple who has never conceived. They've never gotten a positive pregnancy test. They've tried for months and it's just not happening. Generally, using 6 months of fertility-focused intercourse will get you this diagnosis. And when we say "fertility-focused intercourse", you need to know what that means inside and out. You know exactly when you are fertile and you are using those days (before, during, and after estimated ovulation). Couples who have primary infertility know that they can't get pregnant every day of the month. They know that there is a small window of time each cycle when it conception is possible and they know how to find that window and use it. When they are doing this diligently, there is no reason not to expect pregnancy to occur. Whether it's a problem with the woman's hormones or the man's motility, or any number of combinations of minor dysfunction involving the shared reproductive tracts of the couple... after 6 months of trying, a couple can be considered infertile medically speaking. Good doctors will investigate possible causes, run tests to try and identify issues, and treat things as naturally and supportively and therapeutically as possible to help a couple overcome primary infertility.

Some couples will live their entire marriage with this kind of infertility and they will never experience anything but a lack of children coming from the unitive love they share with each other. It is not appropriate to tell someone experiencing primary infertility to just adopt. Adoption is a separate calling - and most importantly - not everyone will be able to (or be approved to) adopt. The diagnosis and treatment of primary infertility is extraordinarily invasive in every sense: physically, mentally, and emotionally. It will take a giant toll on any couple who experiences it and pursues medical avenues to treat and cure it. The calling to adopt is also extremely invasive. It is reasonable to expect a couple to want to explore their infertility and treat it according to their conscience as a married couple, within the framework of Catholic teaching. To put that in plainer language - not every couple will take (or be able to take) every measure to investigate their infertility in this category. The married couple themselves must decide what is best for them in terms of approaching this. With that said, the Catholic Church is very clear about the ethics of treating infertility and the ethics surrounding the individual treatments. A married Catholic couple must form their consciences within that framework. You can read more about what treatment is licit from an official Catholic resource here.

It is common for a couple experiencing primary infertility, whether it lasts almost 6 months or lingers for their entire marriage, to mourn the absence of children in their marriage and to navigate and process all of the stages of grief as a result of it. The cycle of grief can begin and end each cycle and repeat any number of times. The loss of tangible growth to a family is processed very similarly to the death of a family member. The pain never goes away, regardless of the passage of time.



Miscarriage is defined as the loss of a baby who gestational age has not yet reached 20 weeks. Couples who experience miscarriage may also be experiencing primary or secondary infertility. Typically, a couple experiencing miscarriage with no living children before the loss are considered to be in the secondary infertility category. In the vein of inclusion we are using as we define things though, let's explore this through the lens of primary infertility as well. Many couples who have experienced the tragedy and pain of miscarriage and have no living children would actually consider themselves to be experiencing primary infertility, despite the formal definition. This is more a representation of the longing they still hold for children (as well as a lack of understanding how to live their role as parents with no child to hold).

You could be a newlywed couple and conceive on your honeymoon, lose your child through spontaneous abortion (that's what the medical world actually calls a miscarriage) before the child reaches 20 weeks, and because you still don't get a baby in your arms like we talked about above...you might process this like primary infertility. Your doctor might call your condition secondary infertility. Neither is wrong, in our eyes. The most important thing is that people should seek to understand and meet the couple where they are on this topic, not argue the rightness or wrongness of the moniker they identify with most.

Many married couples who experience these early losses don't have a real sense for their own role as parents. It doesn't change the fact that they are parents though! Just know that the grey area of understanding on primary and secondary infertility usually intersects with the topic of miscarriage (and stillbirth and infant death). Medically speaking, the formal distinction can be of importance for treatment purposes. It is important to let your doctor to know whether conception has ever occurred in your marriage when you are receiving infertility treatment. Let's put that grey area to rest for now though and move on to the child involved in miscarriage:

Nothing about a miscarried child is different in dignity than in a living child. The longing to be parents remains for those who have lost a child. But the child themselves is whole, distinct, unique, and completely equal in dignity, soul, and person to any living child. It is difficult to remember for parents who never had an ultrasound or heard a heart beat on doppler. We might be eager to draw distinction at the steps and phases of growth, saying that the further along, the greater the tragedy. But truly, if we respect life in all stages - we must recognize that the unborn child is equal to the tangible life we understand, hold, and cherish. In the same way that Catholics are called to hold faith in things they cannot see or touch, we are called to respect the life of unborn children equal to those who are living.

Miscarriage can be defined as a singular loss, or as we'll expand on below, it can be a recurring condition. Conception isn't necessarily what these couples long for so much as safe gestation and delivery. It is natural to find yourself questioning the reality of your pregnancy and grieving the personhood of a soul you never met. The most comforting thing I can think of on this topic: the cells of a conceived child actually remain in a mother her entire life. Scientific research has found fetal cells in the hearts and brains of the mothers who conceived them. We literally hold them in our hearts and minds forever. There is no figurative about it.

Miscarriage is distinctly different in definition from stillbirth. While the dignity of the child is equal in both situations, stillbirth (as we'll discuss below) is a term used to describe the loss (spontaneous abortion) of a child that is 20 weeks gestational age and beyond. The name for the loss is merely a temporal description, not a distinction that one child was more or less based on when they were lost.

It is common for women who experience miscarriage to feel like their bodies have betrayed them, that they are a "death trap", and to feel and process all of the stages of grief. For men, it is common to be confused and conflicted in how to process the loss. It can also be difficult for men and women to understand each other's grief and to support each other through the loss.



Those who have conceived a child and are unable to conceive again are said to be experiencing secondary infertility. We discussed above that (medically speaking) the outcome of the pregnancy itself is not how a person reaches this diagnosis. Many people will process this diagnosis only in the context of having a living child, followed by infertility. It is not wrong for a couple to do this, and people should aim to meet the child where they are.

Similarly to primary infertility, but maybe even stronger in religious circles...a married couple may find that people urge them to adopt when they don't go on to conceive other children. Others will assume a couple is "done" having children. Still others might wrongly think the couple is contracepting. The fact remains that it is no one's business but the couple on how large or small their family grows. And for those who want more children, secondary infertility can be a deeply painful experience because of all of the unsolicited judgment, advice, and suspicion that may surround them.

Infertility is a symptom of an underlying health condition. It is either the direct result and outcome of a disease or a symptom of the onset of disease. In no other realm of medicine would we offer such strident and painful judgments, opinions, or terse comments.....yet we do with couples experiencing infertility. While this issue is not unique to secondary infertility on its own, one of the things that strikes me the most about secondary infertility is that we actually witness the onset of a problem and we see the symptom manifest in infertility. Infertility has been likened to cancer in how seriously the patient manages it physically, medically, psychologically. So why the judgment? Would we ever tell a person struggling through chemotherapy that they must have done something *else* to make their hair fall out? Would we tell someone suffering from cancerous tumors that "it'll be ok, just relax and everything will resolve itself!". No. Flat No. BIG FAT NO.

It is common for a couple experiencing secondary infertility, whether it lasts almost 6 months or lingers for the rest of their marriage, to mourn the absence of additional children in their marriage and to navigate and process all of the stages of grief as a result of it. The cycle of grief can begin and end each cycle and repeat any number of times. The loss of an ability to grow their family cuts deeply. They long to provide siblings for any living children. In fact, their living children may compound the cross by begging for siblings. Even if the infertility is able to be overcome in some way, the pain from that phase of life is not completely resolved at the advent of additional children. Deep wounds leave large scars. Having one child is no solace for the family you feel God calling you to grow. There is no comfort for a couple experiencing secondary infertility and their experience is as raw as any of the other forms of longing that we've already discussed.



In the realm of fertility as a whole, ectopic pregnancy is one of the most feared situations any married couple can encounter (and rightly so). Ectopic simply means "in an abnormal place or position". We often think of ectopic to simply reference a tubal pregnancy. It's nowhere near that simple though. Ectopic pregnancy can mean any pregnancy that implants in the wrong place, whether it be outside of the uterus, in the fimbria, in the tube itself, on the cervix, or any number of other combinations. There are clinical observations of implantation occurring on other organs in the pelvic cavity. And because the ovary itself is not connected to the fimbria, it's always possible for the egg to migrate elsewhere. Many things can increase/reduce your risk for this to occur.

Tragically, most of the time these pregnancies are not viable. And they pose great danger and risk of hemorrhage and death to the mother. Any time implantation does not occur as expected, there is a grave medical risk to the mother. But in all situations of ectopic pregnancy, it is generally considered fatal to the baby. Yes, you will hear about the one-off miracles where a baby somehow gestated outside the womb for the entire pregnancy and lived. But it is not the majority experience, or even likely to occur. It is the exception. And when the implantation occurs in the tube, it must be dealt with immediately to prevent the mother from tube rupture and massive internal bleeding.

Couples will often first have the joyful experience of a positive pregnancy test, followed by an ultrasound that does not show any gestational sac. Or depending on where implantation has occurred, the mother might be nauseated or experience sharp stabbing pelvic pain. It can vary by couple, but it can also vary from pregnancy to pregnancy as ectopic pregnancy is something that generally predisposes someone to experience it again.

Christians are faced with unique pain, ethical dilemmas, and heartache in this form of infertility. From a Catholic medical perspective, no doctor in good conscience can directly attack the child in treating the mother's health. In fact, many Catholic doctors will seek to find a heartbeat in determining how to proceed in treatment of the condition for the mother. Why does this matter? Many doctors feel that certain medical treatments for the mother might not be permissable if the baby is still living. As a Catholic, the doctor will want to proceed in the manner that is safest for the mother....but also in a way that they aren't compromising their commitment to protect life at all stages. It's a difficult area, to be sure. But suffice it to say, no doctor wants to actively kill the child to save the mother...but sometimes treating the mother results in the death of the child. The intent and approach matter. A lot.

Theologians and ethicists will refer to the treatment of ectopic pregnancy as needing to follow the principle of double effect. If the good medical treatment of the mother in danger of death (as all ectopic pregnancies endangers the life of the mother) results in the death of the child, then that is considered licit. And beyond being licit, that's considered the standard of care for a Catholic. If the medical treatment is focused on killing the child directly for the purpose saving the mother... that doesn't meet the ethical test.

Suffice it to say, I offer these situations not to stem a debate on the use of certain medications or the emergency treatment of a mother at risk of severe hemorrhage or death. And certainly not to question the treatment anyone received in the past. And I never my thoughts as a form of judgment on how the situation was managed in your own care, if you are reading this as a survivor of this terrible situation. I offer these words merely as a way to have the conversation about the pain of ectopic pregnancy (something I've never personally experienced). When we define something and put any boundaries on that definition, there is a human tendency to impart bias and judgment on it. You will encounter a lot of disagreement regarding the topic of ectopic pregnancy even amongst Catholics, and certainly amongst Christians worldwide. The thoughts I've shared here are the result of research and interaction with Catholic ethicists and priests and medical doctors in the search for truth on this topic.

Men may feel completely helpless in the treatment of their child and wife in this medically emergent situation. And perhaps the rawest part of this topic is that we now know that prior contraceptive use can be directly related to changing how fast the egg travels through the tube and it can majorly increase the risk of experience a tubal pregnancy because of that. The slower the egg travels, the more likely it is implant in the tube. There are a variety of things that impact a woman's risk for ectopic pregnancy though. That's just one of them. Lord have mercy on these children and their mothers.




These couples conceive children (whether conception comes easily for them or not!), but they never get a child in their arms. Whether the loss is a result of miscarriage or stillbirth (remember that time is the only distinction between those two words), most couples will identify with this definition of infertility at more than one loss in their marriage. Recurring really does imply that it has occurred more than once. That said, you will often hear RPL (the acronym used for this) used to identify couples who have had a massive number of losses. 5, 10, 15, 20. Lord, have mercy for how these couples carry this brutal cross.

Medically speaking, recurring pregnancy loss as a diagnosis is usually given at 3 losses.

Now let's take a moment to discuss mainstream medicine's approach to infertility. It's pretty horrifying, when we look at it in the context of this specific topic. In mainstream medicine, you generally have to have 3 losses before a doctor will do a work-up on the woman to identify any issues that might need treatment. That's right, you would technically already be in the recurring loss category by the time a doctor even paid attention to your infertility. Am I the only one who is horrified at that?? I can't be. In the world of Christians and all who believe in the dignity of life from natural conception to natural birth.........we have to push ourselves to do better than this. There is no unexplained infertility, folks.

There is always a reason for loss. You might just not know why the loss is occurring. Is it immunological? Biological? Physiological? Genetic? Antibody related? Blood type related? Implantation related? Lining related? Velocity of egg transportation related? Sperm motility related? Cervix related? Hormonal biochemistry related? Thyroid related? Adrenal related? Hypothalamus or pituitary related? Is it the result of disease? Organ malformities? Virus? Unknown pathogen?

The only answer may be that there is one and we don't know it yet.

And maybe more confusingly, is that we aren't guaranteed to find the answer even if we exhaust all modern technologies and procedures available to us. Even if our means are extraordinary and we have the emotional capacity to stay the long, painful course....we just aren't guaranteed answers. What might be simply low progesterone from a deficient organ formation of the corpus luteum in one person, may be a complex tubal occlusion in another, and may be an unfortunately placed defect in the myometrium in another. There won't ever be one reason for RPL amongst all who experience it. And more frustrating is that it isn't always the same reason in one couple. Each pregnancy is unique and in a handful of losses (Lord, have mercy), it can be a different reason for each child's death.

The one answer we do have as Christians is this: a couple is not required to seek all medical treatment needed to find the answer. As Catholics, we form our consciences based on the framework of church teaching and we pray and discern what is best for our own marriage. The answer will look different couple by couple, year by year, and the answer may be revisited and wrestled with over and over.






Couples who experience the pain of stillbirth are those who conceived and carried children for most or all of a normal length pregnancy. From 20 weeks through delivery, any loss of a child is typically referred to as stillbirth. There are many reasons why a child would fail to thrive or die in utero, some of which can be diagnosed and some of which cannot. Many of the details surrounding stillbirth are still a mystery. In fact, maybe couples experiencing this brutal cross that ultimately leaves them with no baby in their arms tend to relate to couple experiencing RPL, as discussed above.

As with miscarriage, the child is unique and distinct regardless of their gestational age or the rate at which they developed in the womb. Some couple will experience the loss of a stillborn child at exactly 20 weeks. Others will have later losses. Still others may lose their children right before or during delivery. Regardless of the temporal details involving the child (no loss is more or less tragic because all children are equal in dignity!), it is a heavy burden for the parents.

Stillborn babies are often referred to as born sleeping. It's a beautiful way to describe them, in my opinion. Perfectly formed babies, with features clearly of their mother and father, born into eternal life in a state of permanent sleep....it's a fitting way to replace the word "still", isn't it?

Often times, doctors will use fetal tissue to try and determine whether there is a genetic or infectious reason for the loss. Many times, there is something discernably wrong upon careful inspection of the placenta or umbilical cord. Perhaps the child was unfortunately strangled by a twisted or wrapped cord. Perhaps the cord disconnected from the placenta itself. Or perhaps it was too short or tore open. There are many reasons for stillbirth at all stages from 20 weeks to delivery.

The sad reality about stillbirth is that there often is no identifiable cause. And by that, I mean that current medical science just isn't able to pinpoint the reason for death. It is hypothesized that a tremendous amount of stillbirths are the results of pathogens that we just can't detect with current technology. Yet other scientists think that stillbirth is the result of hormonal issues (namely that thyroid is more often to blame than we currently think).

Couples that suffer stillbirth have finished nurseries, sat through baby showers and opened presents for the child they waited for patiently. They celebrated positive pregnancies and were in awe for months at the beauty of their child in utero, as they watched him or her move on the ultrasound screen. It can be difficult to describe the loss when all of the parts of the lead up to parenthood have been lived except the part that involved rocking the baby in your arms.

Stillborn babies, unlike miscarried babies, are often administered the sacrament of baptism in the Catholic Church. This often occurs at the bedside of the mother after labor, given the emergent nature of the situation. If there is even a possibility that the child could have taken one breath after birth, then baptism is appropriate. Priests will deal with these details directly with the couple, and specific to the actual circumstances. Stillborn babies - like miscarried babies - deserve a Christian burial. These burials can be their own mass or they can occur at the graveside. Different diocese will deal with each situation according to its own circumstances. 

The parents of a stillborn baby deserve to mourn this loss like any immediate family member's death. And the people who surround them should rally in support of the complicated weeks, months, and years ahead. There is no end to the suffering that parents experience at the death of a child. They come home from the hospital with new life ahead of them, but not the one they dreamed of and prayed for like parents of living babies. As a form of infertility, stillbirth is often misunderstood. We dispel the fact that a lack of conception is the only form of infertility by reminding people that the parents of stillborn babies have a lot to teach us on the topic of infertility.




Infertility sometimes manifests itself in a child that is born alive and dies soon after. Many couples who experience this unique kind of loss are in the RPL category as well. They may have also experienced miscarriages before it. As horrific as it is to lose one child...these parents often lose many. And yet it can be the exact opposite as well. A couple can have several healthy children and go on to have an unexplained infant death. 

Medical science has a long way to go in understanding, identifying, and preventing infant death. Treatments are leaps and bounds ahead of where they were in years past, but we still do not have the capacity to prevent all infant death. Part of the double edge to that sword is that diagnostic measures taken to identify adverse outcomes in pregnancy are sometimes used to recommend inducing abortion. As Christians, we know that there is no choice: all life is precious and to be protected. There are no ifs, and, buts, or medical details that could change that objective Truth.

The use of diagnostic tools in trying to identify maternal and fetal risks can be incredibly invasive. And at the same time, these kinds of procedures and tools that are meant to proactively diagnose issues often carry heavy risks of miscarriage, stillbirth, and fetal death. Many Catholics will say that they believe the risks outweigh the benefits for them. Things like amniocentesis and uterine culturing during certain trimesters can provide some information, but they come with risks of injury or death to gestating children. Couples must discern for themselves, against the framework of church teaching, how they manage those risks.

More confusingly, some couples have no adverse diagnosis prior to birth and still lose their child. There are truly not enough answers for the questions involving infant death. This is a hot topic for scientific research, however, and even just this past week there was a breakthrough in SIDS research. SIDS is a form of infant death that scientists have now correlated to inner ear dysfunction. It will be interesting to see if future research determines causality in that connection so that doctors can develop ideas for treatment and preventive medicine. With that said, some infant death is related to genetic dysfunction, physical deformity, or developmental delay. Some infant death is the result of immunological issues, infection, or can be related to maternal disease.

The parents of infants that die are a grieved population. They suffer in silence, like all infertile couples, unable to grow their family and keep a baby in their arms. There is no way to exclude their loss and grief from that of all other couples who experience infertility and live in the longing.

Infertility exists in many forms and when we seek to understand the pain and suffering of those who experience it, we realize that it encompasses a much larger population of people than we might have first imagined. And the infertile that are suffering among us do it mostly in silence. By having the conversation, we are breaking that silence a little. Let's keep the discussion going... 

This post is the third in a series on infertility. If you'd like to read from the beginning, click on the picture below to read the original post in the series where all of the posts will be linked.




13 comments:

  1. Really beautiful! These are so sensitive and much needed, in my opinion at least.

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    1. Thanks, Tomato! What better week to lay it all out there and remind people that they are included in our prayers, right?? <3

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  2. You are so articulate in all the details. .. Thank you for this.

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    Replies
    1. Thank you for the generous and kind words, friend! <3

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  3. " In mainstream medicine, you generally have to have 3 losses before a doctor will do a work-up on the woman to identify any issues that might need treatment. That's right, you would technically already be in the recurring loss category by the time a doctor even paid attention to your infertility. Am I the only one who is horrified at that??" I was SO horrified by this that I demanded to be seen after losing our second one. Praise be to God that I did because the specialist ended up finding two physical deformities in my womb that needed to be surgically corrected and/or monitored.

    This is one of the most accurate and detailed posts on infertility that I have ever read. Thank you for this!

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    1. Humble thanks for the kind words, Patty! <3

      And I'm so sorry for the loss of both of your children. Eternal rest, grant unto them Lord! Keep trusting your gut. I have to believe it's the Holy Spirit guiding us when we feel so strongly about something to push like you did in your situation. Prayers of healing for you! <3

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  4. this spoke to me and helped me feel like i have a right to be sad. after opening up to God to have children on his timetable, we ended up with low progesterone, waiting cycle after cycle after cycle, and finally to miscarry. and I feel like, since I already have two children, I don't get to say that I am "infertile," like my living children should somehow negate our grief but it doesn't. We still know that when we are deep in despair we have two beautiful children to thank god for and we do every day. But its the pain of absense, knowing someone else should be here and they arent.

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    1. You absolutely have the right to be sad. And you are right that the pain comes from the absence of knowing someone else should be there. God bless you and your beautiful words here. Secondary infertility and miscarriage are *absolutely* a part of infertility. I even wonder if perhaps those with living children understand this pain more than I do. Being able to enjoy a child of my own would only underscore how much I wanted another. Of that I am absolutely sure.

      Hugs and prayers and thank you so much for sharing your experience and for reading here. I hope healing finds you and your family through the pain of your loss. And eternal rest granted for your lost child... <3

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  5. This post is awesome! So detailed, informative, and deeply compassionate. Sometimes, I get so caught up in my primary infertility that I forget about my sisters and brothers who suffer different forms of this cross. Thank you so much for reminding all of us of the various manifestations that infertility can take, so that we can remember to pray for each other in all our various sufferings.

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    1. Thanks, Casey! Sorry I missed seeing your comment here until now. It's really easy for everyone to forget that infertility comes in so many different forms. In fact, I think I may have left one or two out in this list...something I'll need to fix at some point. Praying really is the best any of us can do though, waiting to understand God's will for us and for others...so you are absolutely right on that! <3

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