Genetic Testing

Wow, so I have at least ten draft topics for ALL OF THE WRITING I wanted to do here, and, well, I guess things just got a little away from me! Since I have some time today, and I’ve been meaning to get back into the swing of things, I thought I’d go ahead with what is likely going to be the longest of my intended posts. And that is a recap and some thoughts on our experiences with genetic testing.

Let’s start at square one. Given our age and the slew of problems that we had trying to get pregnant, my husband was very concerned about a baby with genetic problems. It’s a fair concern, and I think it was fair of him to be honest with himself that he did not think he would be capable of handling the needs of a fully special needs child. It was something that we discussed at length, and together came to the decision that if there was decisive proof that there was a problem with our baby, we would have most likely terminated the pregnancy (I don’t care for a debate or any moral grandstanding on this topic – it’s an individual choice, that must be made by each individual. Period.). So, because of this, we decided from the get go that we weren’t going to mess around with what is often considered standard testing, and would start our genetic testing with a Cell Free Fetal DNA test. Even if that meant we had to pay the cost of the test out of pocket.

The Cell Free DNA Test

Once we met with our OB, we were sent to a genetic counselor to have a discussion on if genetic testing was right for us. It’s probably not for everyone – and some people opt out of any genetic counseling. After sharing our own experience, you may see why. Anyhow, we went in and basically said we didn’t want to do the scanning tests. Just jump to the cell free fetal DNA exam. Our lab performs this under the name “Harmony test”. Other, similar tests, may be called Materniti21 or another one that I can’t remember off the top of my head. Anyhow, what this test does is it is able to pull fetal DNA from the mother’s blood and look for the most common, major chromosomal abnormalities with a very high accuracy rate – with the main ones being Trisomies 21, 13 and 18. They can also test for extra X or Y chromosomes, and find out the gender of the baby. This is generally done between weeks 11 and 13.

Before we had this testing, we met with a genetic counselor. She sat down with us and took a medical history from both sides. Robert’s was very, very quick as he simply told her he was adopted and that was the end of the conversation. My side, however, was a bit more complicated. We went through my family history – and I do have some concerns on my father’s side, being that his family is a carrier for familial adenomatous polyposis. It’s a hereditary form of colon cancer, that if you have it, you have a 50% chance to pass to your children. My grandmother had it, my uncle died from it, and my aunt has less than half her colon. Now, if you don’t have it, you generally aren’t a carrier and can’t pass it on. My father gets tested regularly, and his gastrointerologist  has told him that he is most likely not a carrier.

Well, during all of my medical issues the past few years, one of the things my hematologist (who is also an oncologist) had me do was go meet with my own gastrointerologist and be tested myself. So I did. And I had many tests – for this and other potential GI issues – and I was healthy. No problems. He subsequently told me that I am likely not a carrier, but I should be retested every 5 years, even though I’m younger than the general age you would start routine testing. Cool. No problem.

Well, my our first appointment with the genetic counselor, she pushed REALLY hard for some genetic testing related to this problem. I get it, it’s her job. However, despite advising her my father had been tested and told if he didn’t develop it, his kids were safe AND my own specialist in the area indicating the same thing as well as me not having any issues at my age (issues generally start to appear in your late teens/early twenties), she wanted me to go to my aunt and have her submit a blood sample for genetic testing to compare  against mine. After advising her that wasn’t going to happen – and repeating what both my specialist and my father’s specialist said, she finally conceded that the extra testing was likely unnecessary and that everything was fine.

So after all of that, we were sent with our lab paperwork to have our cell free feta DNA testing done. About a week later we received the results indicating that we were all clear for the major Trisomies and we were having a girl! Great!

The Nuchal Translucency Scan

Around 12 weeks, we were given an ultrasound to measure the Nuchal Translucency on your baby. This is a pocket of fluid on the back of the baby’s neck. This scan is generally used to look for genetic risks, such as Down’s Syndrome, but is very inaccurate alone – and is considered a screening test. It is usually paired with other tests, such as blood work, to come up with a percentile risk for problems. They also can check to make sure all of the body parts seems to be forming correctly, and the intestines are on the inside of the baby, etc. Since we’d already had the cell free fetal DNA testing, we knew that we didn’t have any major issues, but were encouraged to still do the 12 week scan as it can help identify other potential problems, such as heart defects.

Well, it turns out that our NT Scan was very slightly over what would be considered normal in the US. I specify that because in other countries we would have fallen within “normal” ranges. Anyhow, I digress. This lead to a  second meeting with the same genetic counselor – and it did not go well at all. I know that her job is to offer a risk assessment based on the information provided. However, there is a right way and a wrong way to do this job. And I would say that she hit all of the wrong markers. The conversation went so poorly, that Robert refused to see her again.

Let’s talk about how she started this conversation. It was with telling us that our scan was slightly elevated – and since we’d already ruled out major problems with our lab work, it meant there was a less than 5% chance of a rare condition called Noonan’s Syndrome or a less than 5% chance of having a congenital heart defect. What she didn’t tell us, until we REALLY pushed and at the end of our conversation, was that there was a greater than 97% chance that absolutely everything was okay and we would deliver a perfectly healthy baby. But there was a lot of bullshit that happened in between point A and point B to get there.

One of the things that we were both adamant about was that we didn’t want invasive testing unless it would be conclusive and/or was necessary. Our reasoning for this was simple: there is a risk of miscarriage associated with chronic villus sampling and amniocentesis. For us, this risk had to be weighed against what we would learn from the testing. We were both very clear about this from the start of our session. Well, it turns out that these tests can only pick up Noonan’s Syndrome 65-70% of the time. That is pretty far from being a definitive test. We weren’t interested given the very small likelihood of Noonan’s being an issue (>5%). We communicated this repeatedly, yet the genetic counselor kept pushing it. Robert was livid.

We had a lot of questions regarding Noonan’s – and we are both fairly educated people asking, what I felt, were fairly on point questions. And she flailed about trying to answer them, often times not having an answer. Throughout this process she seemingly referenced a sheet with information on the disorder. Well, it turns out that when we asked for a few minutes to talk things over amongst ourselves and asked for the reference sheet, it was just a prop! It didn’t have the information about Noonan’s and was completely unrelated. I was furious. We were eventually provided with a fact sheet to aid in our discussion- but by that time, I’d already hit the internet and read quite a bit about it. We’d also decided that the risk was so small and the condition was something we thought we could handle, that we wouldn’t terminate even if the test came back positive – and, as we had previously stated, we would not be doing the invasive testing.

The other thing that was suggested was having a fetal echocardiogram done to look for any potential problems with the heart. This is a non-invasive procedure, and helps to identify any potential problems that we would want to be aware of that might affect fetal care, as well as post natal care of the baby. While Robert’s ass was still pretty chapped over the previous conversation, I did think this was an important test to have done, even with such a small chance of a problem, so that we could rule out any potential issues.

Ultimately, Robert went home really pissed at the genetic counselor for how she presented the information. I went home super worried that something was wrong. And we decided to opt out of an amniocentesis but to go forward with the fetal ECG. And this experience is why, I suspect, many people will opt out of genetic testing.

The Anatomy Scan

At 20 weeks we went back in for another detailed ultrasound – this is frequently the only ultrasound a lot of women get throughout their pregnancy. This ultrasound is used to look at make sure that the baby is developing probably. Two arms, two legs, internal organs, etc. This is also the ultrasound where most couples will found out the sex of their baby if they want to know and didn’t have the cell free DNA testing done. Ours was relatively uneventful – other than the fact that our little stinker wouldn’t cooperate and move into a good position to get a profile/facial shot.

We met with the actual MFM doctor this time (much to Robert’s relief), and were told that everything looked great. The Nuchal Fold had normalized, effectively removing the noonan’s risk – and cementing that we made the right decision declining the amnio. They also did not identify any major issues with the heart. She asked us if we would mind pushing the fetal ECG back a couple of weeks to let the heart develop more so that they would have a better look at any minor issues that may exist. All in all, this was a good appointment and we both felt good (and relieved) after we left.

The Fetal Echocardiogram

At week 24 we had our fetal echocardiogram. This is probably the most boring ultrasound! It’s about an hour long, and it all of the heart. The look at all four chambers and they watch how the valves are functioning. They can even observe how the blood flows in and out of the chambers and the valves! Its’s pretty amazing…but also pretty boring. After the ultrasound we met with the same MFM doctor and she told us that everything looked perfect and there were no concerns. We were graduated from there unless my OB felt we needed to go back (I’m technically considered high risk given my age – and probably my autoimmune problems and medication). Spoilers: we are back seeing the MFM (nothing serious!), but that is a post for another day.

Would I Recommend Genetic Testing to Others?

That is actually a very difficult question to answer. For us, we knew from the start that it was something we would be doing given our age and difficulties conceiving. But I also feel that it may not be the right answer for everyone. It really is a very individual decision – and one that each couple needs to make on their own after a lot of thought and discussion. If you know that you wouldn’t terminate for any reason whatsoever, maybe skip it. If you want to know just to be prepared, or because you know that you aren’t capable of the care involved with a special needs baby, then participate. Nobody can make those decisions for you.

The one thing that I will say is that it definitely added a fair amount of stress for a lot of “what ifs”. And the truth of the matter is that much of the genetic testing that you can undergo is simply a series of statistics and guesses – very little of it is absolute. Which is also something that should be taken into account when making the decision on if genetic testing is right for you. I, personally, don’t regret that we participated in it – although I do wish the early meetings with the genetic counselor had gone more smoothly.

Anxiety

It is no real surprise to me that I have been a complete worry wart through my pregnancy so far – I mean, I’m just naturally a worry wart anyhow. But was has been a little surprising is the sheer level of anxiety that I have been feeling recently. Way more than worry wart stage. The kind where all I can think about is something going wrong, and then I fall down the rabbit hole (aka the internet) and I am starting to feel that I am drowning in my fears. Probably irrationally. But I can’t seem to help how just downright terrified I have been feeling lately.

The strangest thing about it is that as my pregnancy progresses, my risk decreases. But all it takes is one post on a message board to send me into a spiral of worry. I wish it were as easy as “just don’t read those things” – but it’s not. Even when I actively try to avoid them, I will inadvertantly come across something that just scares me senseless.

I don’t like these feelings. And I really need to get control of them. My anxiety seems to becoming more constat – and I am getting to the point that I almost feel like I need to bring it up with my doctor.

In an effort to try and get some ground under my feet again, and stop worrying so much, I visited the same place that is a large cause of my anxiety: The Internet. As it turns out, anxiety in pregnancy is a really common thing. One of the methods that I found to try and help control the anxiety was to make a sort of journal that not only outlines what is making you anxious, but also makes you find information to combat your concerns.

Since I am open to trying anything that will help me hold it together (and not end up a sobbing mess on my bedroom floor), I thought I’d give it a try.

Anxious Thought: That I will miscarry.
How that thought makes me feel: Terrified.
Evidence for the Worry: Many women miscarry, even after their first trimester. I’ve heard and read stories about it happening.
Evidence Against the Worry: While women do miscarry once they are out of their first trimester, once you have heard and seen the heartbeat your chance of miscarriage decreases significantly. In fact, once you enter your second trimester your chance of miscarriage is less than 5%. That means that there is a greater than 95% chance that your pregnancy is going to be uneventful and that you are going to deliver your baby.

Anxious Thought: Now that we’ve “announced” if something happens people will be disappointed.
How that makes me feel: Stressed. I have also had a problem with feeling like I disappointed people.
Evidence for the Worry: Everyone is very excited that I am pregnant. Disappointment is a natural reaction when something you want to happen, doesn’t.
Evidence Against the Worry: Everyone that is important to you, cares about you. They will be a support network, and will love you, even if something happens. Their first reaction will be to find out how you are doing, and what they can do to help you.

Anxious Thought: That something will come up wrong on the echocardiogram in December.
How that makes me feel: Scared.
Evidence for the Worry: There is scientific research that shows some percentage of babies with an NT reading that matches our has a heart problem.
Evidence Against the Worry: There is a less than 5% chance that something is wrong. In fact, over 93% of women who have an abnormal reading between the 95th and 99th percentile go on to have perfectly normal, healthy babies. The odds are very much in our favor that nothing is wrong.

Anxious Thought: That I will miscarry and not know it.
How that makes me feel: Terrified.
Evidence for the Worry: Women, even those in their second trimester, have missed miscarriages.
Evidence Against the Worry: While women do miscarry once they are out of their first trimester, once you have heard and seen the heartbeat your chance of miscarriage decreases significantly. In fact, once you enter your second trimester your chance of miscarriage is less than 5%. That means that there is a greater than 95% chance that your pregnancy is going to be uneventful and that you are going to deliver your baby.

A few facts:  It is most likely that I will deliver a healthy baby. It is very unlikely that something is going to go wrong. While bad things do happen, they are statistically unlikely to happen to me.

It’s Been Three Months Since My Last Post

Some of you might have already guessed what the prolonged silence here meant. Some of you may have thought that I’d just been busy or forgotten about the blog. And some of you may have keyed into my lack of frustration and ranting on other social media venues. And for those who haven’t, or would just like some confirmation, here you go:

I am (finally) Pregnant!

(it’s a girl!)

It has been a completely nerve wracking, terrifying and exciting three months. Constantly questioning if this is really happening. Waiting for something to inevitably go wrong. Being hyper sensitive to every little ache and twinge in my body. But here I am, successfully through the end of the first trimester. And, well, I think this is really going to happen!

I suppose that maybe I should turn back time about three months, and start from there. We completed our fifth and final IUI in August, just before my birthday. We had a reconference with the doctor regarding our most recent lab results, and had decided that we were ready to go ahead with the jump into IVF. We would complete this current cycle, make sure that we’d done everything the insurance required for IVF coverage, and start the IVF process our next cycle. It was a done deal. We were ready to move forward and as my 37th birthday passed me by, we were keenly aware the time was not on our side for this adventure.

On August 24th, I received some lab results back from my hematologist. Of note was that my CRP, which was 5.1 and greatly improved in my last reading, had doubled and was back up to 11.2. We had known from the conversations with the RE that pregnancy itself might bring on some autoimmune responses, so I rushed down the block to the drug store and bought a pregnancy test. I sat in the bathroom at work afraid to be optimistic – and yet when that three minute marker passed, there was a definitive second line present.

Even though I wasn’t supposed to do a urine test for another day, I know from experience that the HCG from my trigger shots are out of my system 10 days after administration. So despite being a day early, I called the clinic, explained that I was a little concerned because my CRP was up again (and my WBC for that matter) but had gotten a positive pregnancy test and was worried this was indicative of an autoimmune response and that I was concerned about another loss. They had me come in that afternoon for an HCG and Progesterone blood draw, and sure enough it said I was pregnant. The RE said we can expect my CRP to rise with pregnancy, so he wasn’t concerned about that – but he wasn’t sure what would be causing the elevated WBC. They had me come back in 2 days later for another HCG draw, and my numbers had more than doubled. Another two days after that, and they had doubled again. It looked like this pregnancy was going to hold!

I went in at 5 weeks to have an ultrasound and look for the gestational sac and egg yolk, and sure enough, there it was. It had good placement within my uterus and everything seemed to be progressing as it should be. A week and a half or so later, I went back in for another ultrasound to look for a heartbeat. And there it was, beating away. I was told to schedule an appointment with my OB – who had me come in around 7 weeks 3 days, and there was that little heartbeat again. 9 weeks I had another scan at the clinic, and everything was progressing as it should. The clinic left it up to me if I was ready to graduate yet, but still nervous that something was going to go wrong I asked to come back one more time before the appointment for our genetic testing – just to make sure that everything was still okay. And sure enough, that little heart was chugging away and everything was perfect! An appointment the following week with the OB at 11 weeks 4 days and things were still progressing, with the OB advising me that it would be safe to share our news.

Wanting to wait until we had our genetic results back (I will write another post on this experience in the next few days), we held out another week and a half before sharing the news with family. Which we did this weekend. Which means that it’s time to share the good news with everyone else!

Even though I’m posting this today, I will probably wait until tomorrow to announce on my twitter account. I just thought it would be awkward to have added a few new pages to the blog here…and not say anything! Additionally, I will not be posting updates on my main twitter account. I have created a separate, private account for baby related updates (@MyPapoose) that you are welcome to follow if you’d like. (If you follow, and I don’t follow back, you may want to give me a nudge and let me know who you are!).

I’m sure now that it’s no longer a secret, I will have more regular updates to the blog – and already have a whole list of posts that have been rattling around in my head! Needless to say, I am really excited and can’t wait to chat a little more about everything!

I Always Knew Robert and I Had A Lot in Common

I thought I’d go ahead an give a bit of an update, since we have received some additional information that is going to affect our attempts to conceive. Tuesday one of the labs that we had done was received by the doctor’s office. I don’t know if the other two are completed yet, but this one came back in and provided some answers for us. As well as introduced, or I should say educated us, on a hurdle that we are going to have to overcome in this whole baby making process.

Of the “optional” tests that we opted to have run, one of them was to test our DQ Alpha/HLA. Basically it is checking to see what two genotypes each of us carries – which is probably a super simplified explanation of what it really involves. As I understand it, generally speaking each couple will have four distinct genotypes. When the sperm and egg meet, and create an embryo, that embryo will subsequently inherit two genotypes – one from the mother and one from the father.

Well, it turns out that Robert and I share one of our indicators. This means that instead of having four genotypes between us, we only have three. So what does this mean? Well, it’s complicated and I’m not sure I fully understand everything yet (we have about 10 questions for the doctor), but the short answer is basically that one of every two embryos (50%) will be incompatible with my body, causing my body to attack and reject the embryo.

As I said, a hurdle. And while it is going to be difficult to overcome, it’s not insurmountable.

Well, this all sounds rather unfortunate, doesn’t it? (I agree!).

Because Robert and I only share one of our two genetic indicators, we have what is considered a “partial” match, meaning that only 50% of our embryos will be unsuitable. This means that we still have a 50% chance for a successful pregnancy. It would be a whole lot worse if we had a complete match, meaning that 100% of our embryos would be unsuitable (requiring a surrogate or adoption). But, it will still be challenging.

After emailing with the nurse yesterday with some questions, it seems that there is apparently a lot of controversy about the treatment options amongst the medical reproductive community on how to best treat for success. Based on what the nurse told me yesterday, I suspect I know which side of the fence my doctor is going to fall on – but we see him this afternoon and I hope to be better educated at the end of that meeting. I have an entire list of questions written out for him.

Of the things that we are going to discuss with him is his opinion on just jumping into IVF next month (assuming this IUI isn’t successful), given the new information that we have. Robert and I were originally decided on doing one more letrozole/IUI cycle since I have another round of letrozole at home still – but given this new information, I think I’m ready to just pull out the big guns and get down to business. Additionally, given this new information, I think we are pretty decided on going forward with the PGD testing (although we had some additional questions for the doctor today). Our thought is that if we are already at a 50% chance of success, it is probably in our best interest to make sure that the embryos going in have at least that 50% chance and are otherwise genetically sound.

Granted, our insurance won’t cover the PGD testing (I have a call in to confirm that the DQ Alpha/HLA results are not sufficient for coverage, but I’m pretty sure something needed to come back in the Karotyping tests to be eligible for  insurance coverage for the procedure) so there is going to be a finite number of times that we can afford to undergo this extra step. But we are going to run with it as long as we are able. I also have to find out from the insurance how many IVF treatments are covered – I don’t know if there is a set number or if my plan allows unlimited treatments.

Anyhow. I should have more answers and information after my appointment this afternoon. I’m also glad to have at least some insight into why this has been so hard for us, and (potentially) why I am experiencing recurrent losses. I know that having answers doesn’t necessarily solve problems – but for some reason an explanation helps me understand, which subsequently makes me feel a little more in control. And for now, I’ll take that.

Moving Forward

I thought I’d go ahead and give a little update with where are now and where we are going. We saw that doctor last Friday to discuss my last early loss and what our next steps are with regards to trying to get (and stay) pregnant. Ultimately, he is still feeling very positive that I am going to become pregnant – and did point to the fact that I’ve gotten pregnant twice as a positive sign (despite the fact that it doesn’t MATTER if I can’t hold onto it).

We had a lot of questions for him. He had answers for us.

One of the things that I like about my doctor is that he never really pushes you into doing something. He will subtlety guide you in the direction he’d like to see you go, but will remain completely open to what you want to do. I knew that there had been some discussion with the nurses about moving into IVF, which I’m not opposed to doing, but remained concerned that IVF wasn’t going to solve my early loss issues. So we talked quite a bit with the doctor about this.

Ultimately, it sounds like he still believes that my losses are likely the result of a genetic abnormality in the embryo. So we are running a few more tests and both Robert and I had blood work sent down to a lab in California for testing. I also had some additional lab work run on just me. These are the last series of tests to be run. On my chart, all of the boxes will now be filled with lab results. I don’t know what we expect these results to show, but at least we will have ruled everything out.

Additionally, the doctor wants me to have a Saline Infusion Sonohysterography (SHG) completed. This is a procedure where they will place a saline solution into my uterine cavity and ultrasound my uterus. The purpose of this test is to look for any abnormalities within my uterine cavity, such as polyps, fibroids or cysts that may be causing, or contributing to miscarriages. I’m not entirely sure what I’m expecting them to see/find, but it’s one more test to check off the list and one more thing to review for potential problems.

The doctor is also having both Robert and I do a ten day antibiotic treatment together, in the off chance that we are passing some sort of bacteria between the two of us – and I was actually happy to hear him recommend this, as it is one of the things I’d read about doctors doing. However, after my bout with C. Diff. and my digestive tract still being a little out of whack, I’m a little nervous about an extended antibiotic treatment. Nonetheless, we are going to move forward with it. I’ll just keep pumping probiotics into my system and having some frozen yogurt every day (I can’t stand regular yogurt! But many frozens still have active cultures in them).

In our chat about next steps, the doctor indicated that moving into IVF he recommends that we do a process known as Preimplantation Genetic Diagnosis (PGD), given our losses and my age. Robert and I haven’t decided on this yet, and are doing a little more research into the pros and cons of the process, as well as the extra cost (which we haven’t confirmed, but are guessing my insurance won’t cover). We have a reconference with the doctor on the 18th, and will have a few more questions for him regarding the PGD testing. We don’t have to make a decision on it yet, but we do want to be fully informed in order to make the best decision for us.

If you have any factual information or resources on PGD, I’d love to hear/read them. However, please note that I am NOT interested in your opinions on if you think PGD is “right” or “wrong”. That is a decision for Robert and I to make – and since we are both fairly big believers in science, you aren’t going to sway me by telling me I should not play god – you are just going to piss me off. So just don’t.

I guess that brings us to what, exactly, are we going to do next. I know I mentioned that the doctor seemed optimistic about our chances of a successful pregnancy – and addressed most of our concerns (figuring out why we are miscarrying, prolonged use of ovulation stimulation medication, not wanting to utilize a donor egg for IVF, etc.). He was also very impressed with how well I respond to the letrozole treatment that we’ve been doing for the past 8 months, indicating that I have an above average response to the drug. And in his subtle way, despite our conversations regarding IVF, he seemed inclined to do a couple more IUIs and see where they went, and/or if the additional testing revealed anything.

While we are  worried about my age, IVF is also a very invasive and difficult procedure. I very much want to get pregnant, but I also want to make sure that we’ve explored every option. As such, we decided to do up to three more IUIs. If the test results come back and indicate we should move into IVF before then, we will. If I have another loss, we will go ahead and move into IVF. And if I just decide that I’m fed up and done with IUIs, we will also move into IVF.

The doctor DID say that if we do three more IUIs and aren’t successful, we need to seriously consider IVF as our next treatment. And I’m onboard with that. I probably would have been on board if his inclination had been to move into IVF now. If I’m being 100% honest, part of the reason I’m doing a couple more IUIs is to make sure we’ve met the insurance guidelines, without question, for moving onto IVF. And I guess since I’m being honest, I’m also not sure I’ll make it three more IUI cycles before saying “fuck it” and moving forward.

Although, there are some benefits to taking a few more months before IVF. I’ve been steadily losing weight – and the more I am able to lose the better off everything will be. Hopefully in the next few months my medications will have my CRP/inflamation down to “normal”, or at least less high, levels. Which would also be good. And while it’s not huge on our priority list – a couple of months will also give us time to make sure our finances are in order if the insurance doesn’t cover the PGD testing and we opt to do it anyhow (which is the way I think I am leaning right now). And – who knows – maybe I’ll get pregnant again and this one will stick, rendering all of the above moot.

Anyhow…we hiked up to Tolmie Peak on Mt. Rainier the week before last and I thought I’d share some pictures. We are going up again this weekend since the cloud cover never lifted last time so we didn’t get the view from the top of the peak, but the view from the hike up was still pretty beautiful!

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The Things That Often Go Unsaid.

Struggling through infertility is challenging. It’s hard on your body, and harder on your spirit. One of the hardest things for me to deal with is pregnant women. Not that I fault them for being pregnant, or am angry at them that they are pregnant and I am not, it’s just that a pregnant woman is simply a reminder of my own failures in trying to become pregnant. While mot people are “ooing” and “ahhing” at the ever expanding belly of the pregnant lady, most are not aware of how that makes the not pregnant lady feel. There are so many things that go through my mind, yet go unsaid, when dealing with a pregnant lady.

Saying them would make me look rude. Or insensitive. Or, I don’t know, fill in some other negative descriptor. But what frustrates me is the blind insensitivity of others. Often not intentional – but no less hurtful or heartbreaking. And, well, I’m tired of letting things go unsaid, so I am going to say them. I am not going to apologize for them, and I’m not going to feel bad about saying them. Because my feelings are also valid.

  • I understand that your back aches, your stomach is ever growing and your breasts are swollen. But I don’t want to hear you complain about problems that I’d be thrilled to deal with. You are pregnant, something I am not but very badly want to be, I have no sympathy, or ability to empathize, that you are experiencing the symptoms of being pregnant. I would love to have your problems.
  • I don’t care if it’s rude, when I go out with my husband to “get away from everything” for a bit, I don’t want to be seated next to a pregnant lady, or served by a pregnant server. It’s not their fault that they are pregnant, but I don’t want the constant reminder of it while I’m trying to take my mind off the fact that I’m not pregnant.
  • Please don’t tell me “I didn’t want to be pregnant”, “I wasn’t supposed to be able to get pregnant” or “It was an accident”. Because, well, fuck you. I would happily be in your place. I would be THRILLED to be pregnant. You are most definitely complaining to the wrong person.
  • Along those same lines, making jokes that you “have extra” kids when one gets injured pretty much makes me want to punch you in the face. Congratulations on being overly fertile and having more kids than you can manage. I would have given anything to have even a single one of them.
  • Please don’t talk to me about how HARD it is to get pregnant when you’ve been trying for less than a minute. Hit me up when you pass the 9-12 month mark and are now part of that illustrious minority of people unable to become pregnant within a year’s time.
  • Please don’t complain about your age and how challenging it’s going to be to get pregnant if you aren’t yet thirty. Put yourself in my shoes – just for a minute – not only am I 37, but I am also struggling with infertility. Tick tock, your clock. I promise it’s not as wound down as mine.
  • Please don’t get upset if I make a comment about how your comment makes me feel. I am entitled to my feelings. I am entitled to tell you that your commentary is upsetting to me. Just as you are entitled to offer your commentary to me.
  • Unless you’ve experienced the physical and emotional struggles of infertility – please don’t pretend to know what I’m going through or how hard you “imagine it must be”. Because you probably don’t have any idea. You probably think that you do, but you don’t. Talk to my husband after our 20th negative pregnancy test as he tries to console me.
  • I don’t want to hear about your second cousin who is pregnant again. With her fifth child. In fact, I don’t want to hear about your sister, brother, friend, secretary or spouse who is pregnant. I don’t want to TALK about pregnant people who aren’t me. And since I’m NOT PREGNANT, I just don’t want to talk about pregnant people period.

 

I am constantly shocked by the (usually unintended) insensitivity of others. And then further shocked when they are defensive or upset about learning how they made me feel. There are fewer and fewer people who really KNOW what it’s like to be me right now. To put my entire life on hold for a dream that I can’t quite reach. To pump myself full of chemicals month after month that make me nauseous, make my hair fall out, my skin break out – that make me FEEL pregnant. To have hope month after month and then to have it smashed into a million pieces – only to have to pick all of those pieces up off the floor and glue them back together so that you can move forward the next month to repeat the process.

 

So, no, I’m not sorry about saying the things that are usually left unsaid. Because sometimes I wish I would say them, rather than curl up politely, so as not to hurt your feelings, and instead let them hurt me.