Forward

8.2 mm! I made it! 

Just barely, but enough. Enough to keep pushing forward. All the hormones and tears and trips and running after meds weren’t wasted! Another hurdle cleared, another Intralipid infusion, let’s keep going, keep moving forward.

Tired from a weekend spent driving 1100 km to buy Neupogen in Poland, anxiously hopeful it wouldn’t be for nothing. Drove another 400 km today for a 5 min scan. 

Sitting there, feet up in the air, watching the doctor as he chooses the measurement points: a tiny slip of his finger and it goes from 7.8 to 8.2. How can our fates be decided by such imprecise moves?

‘Just as we like it’ was his final judgment. I’d have preferred it one week earlier, thicker and more defined. But it’s good news, so I must enjoy at least five minutes of glory before letting the next worries settle in. 

Transfer day is set to Tuesday the 13th! Only one blastocyst will be thawed and transferred. 

One chance. Another shot. The most anticipated and medicated so far. 

Breath in and place one foot in front of the other. Forward. 

Hormonally charged

I’m sitting at the toilet in my office, tears rolling down my face. This scene has repeated itself so many times before, it’s gotten old. Today, though, I don’t feel depressed or grief-stricken or frustrated or even sad. But I’ve been feeling like crying all the time. Having a really hard time holding these tears back. So I’m blaming estrogen for it. All 12 mg daily of it. I’m also blaming it for the constant nausea, cramps and copious amounts of CM.

I’ve become obsessed and been listening non-stop to this 80’s rock band songs. I haven’t listened to it for at least 10 years or so. The lyrics have a complete new meaning to me now, in light of the last years experiences. The sadness, longing and confusion I earlier associated with teenager’s broken hearts are now so much deeper and more meaningful. And makes me want to cry.

This FET has been a lot more challenging than I anticipated. Hurdles that I need to handle showing up almost at a daily basis. I thought I could get a break this time. It should be simple; I now had a plan, a doctor, a treatment protocol. Buy the medicines, use them at the right times: simple. I should have known nothing is that simple when infertility treatments are involved. Between coordinating several doctors in different parts of the world, contacting pharmacies all over Europe trying to get the best possible price for the (extremely) expensive medicine, travels, work, post delays… I just want this to be over as soon as possible.

I thought last Sunday I would be approaching the end. I could see the light in the end of the tunnel. I’d have my lining check, get the date for the transfer, be excited. Instead, my lining is too thin, they said. Nice and trilaminar, but too thin: only 5 mm after 14 days of estrogen supplementation. That’s when the double estrogen dose entered and should be continued at least until Monday, when they will reassess it. No transfer unless the lining gets above 8 mm.

I handled the news surprisingly well. I guess I’m callous enough by now. The thoughts going through my mind were: “never had lining issues before, but with my kind of luck this will become a new problem going forward. Oh, well, nothing I can do about it now… hope they allow me to try again as soon as I bleed if they cancel this cycle, I don’t want to miss my friend’s wedding in Spain in October!”.

At work my tasks are pilling up, I’m delayed in the project’s schedule and feel bad about it. But when I’m sitting in front of my PC and things are not working, I’m simply not able to come up with a solution. I even tried to write a simple report instead, but couldn’t even muster two intelligible sentences (not sure about this post either). It’s hopeless, I just wish I could fast forward to Friday afternoon, drive to Poland to get the cheaper medicine (1/6 of the price!), drive back, have my appointment Monday morning and figure out whether there will be a transfer this month or not. I also have my third Intralipid infusion scheduled to Monday afternoon, which I need to cancel if the FET is not going forward.

Ugh, I feel like a huge hormonal mess… Just hoping I won’t stay at this dose for much longer…

What is wrong with me

“What is wrong with me?” I must have asked myself this question thousands of times. Especially in the last few years.

I asked “what is wrong with me” when we started trying and month after month I wouldn’t get pregnant.

I asked “what is wrong with me” when I finally got a positive pregnancy test, but had been bleeding on and off for a week, in what turned out to be an ectopic pregnancy.

I asked “what is wrong with me” when I got pregnant the second time and couldn’t blissfully enjoy the pregnancy, as I was still hurting from the first loss, only a few months prior.

I asked “what is wrong with me” when the doctors confirmed our second baby was not developing and had died in my womb.

I asked “what is wrong with me” when my body wouldn’t even miscarry naturally, always requiring medical intervention.

I asked “what is wrong with me” when we saw the little heart of our third baby beating in the ultrasound screen and I still couldn’t believe I would be taking this baby home, alive.

I asked “what is wrong with me” when I couldn’t bounce quickly back after yet another loss, as it seemed to be expected from me.

I asked “what is wrong with me” when during my first IVF egg retrieval the doctor uttered in disbelief that I had spontaneously ovulated and so she could only retrieve one egg.

I asked “what is wrong with me” when I couldn’t genuinely feel happiness for all my friends’ and sibling’s pregnancies, as my sadness and jealousy got mixed in.

I asked “what is wrong with me” when I watched one after another, pregnancy tests not showing the expected progression, indicating our 4th baby wouldn’t be coming home either.

After that fourth loss, having been through 2 IVF fresh cycles, one emergency laparoscopy, one dilation and evacuation surgery, loosing one of my tubes and countless examinations and procedures, I needed an answer. I couldn’t bear hearing “just bad luck” anymore. I needed to know exactly what was wrong with me, why my body couldn’t sustain a pregnancy. And I would spare no effort to get an answer.

I took matters into my own hands and even ordered some genetic tests online by myself. I visited several specialists on different countries. I finally paid a large sum of money to one of the world’s leading experts in this field, simply to find out “what is wrong with me”.

And I waited. I patiently waited months on end, while trying to make any lifestyle changes that could help.

As the day for receiving my most anticipated test results approached, a huge wave of anxiety settled in. What if there’s nothing wrong? What if it’s just bad luck? Am I overreacting? Am I wasting time and money and putting myself and my husband through all of this for nothing? Just to satisfy my childish desire for control?

I now really wanted there to be something wrong with me. Anything. Not only so I could focus on fixing the problem, but also so it wouldn’t have been all for nothing.

When our appointment time finally came, I was ready. Dr. Braverman jumped right in and listed all his findings. There are quite a few things wrong with me, as it turned out, but he had a plan. A plan that involved several drugs and surgery, but could give us about 80% chance of conceiving and carrying to term.

After the appointment I felt immense relief. There were reasons. There were possible treatments. I was ecstatic with the news, if only a bit worried about our next steps. And so we left to my (Zika infested) home country for two weeks of vacation. I just needed to let the news sink in before we could make a decision of how to move forward.

Coming back home, I couldn’t let all the information from the appointment in the back of my mind anymore. It started to overwhelm me. All of it: the diagnosis, the prognosis, the suggested treatment, the financial strain required. It all seemed like too much to bear.

The initial excitement was now fully converted to worry and doubt. Is all this really necessary? What consequences all these drugs will have on myself and my baby? Why should I trust this doctor more than all the others that told me I should just try again? Why would him be right and not the others? Just because he fed my desire for an answer? And what answer is that, anyway? It’s not a one-line diagnosis. It’s a collection of little things here and there, which may or may not be contributing to my losses. And his treatment suggestion started to feel less like my much desired tailored protocol and a lot more like a from-the-shelf solution offered to everyone.

In the world of reproductive immunology there’s no shortage of antagonistic opinions and disagreements. No treatment or diagnosis is easy and straight forward. There is too much doctors and researches are still trying to comprehend, so it’s easy to feel like a lab rat.

Yet, we still needed to make a decision. One that was right for us, our individual situation. Although it took a lot of talks, a few arguments and many tears, we reached a decision that we were comfortable with.

So here’s our current plan: we are going to waive surgery for now and try a FET (frozen embryo transfer) while following the reproductive immunology treatment protocol. And hopefully it will happen next month (August).

HDR photograph of an abandoned dock set afire by intense sunset color

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For those who would like to know all the nitty-gritty details of what seems to be wrong with me, here’s the list (Disclaimer: I’m not a doctor nor an expert, I’m simply stating my personal understanding on these complicated issues):

  • Endometriosis. Braverman was very adamant about this and expects it to play a very large role in my case. That’s why he was strongly advising excision surgery before any further treatment. This was also one of my major doubt points. Even though I’m quite certain I probably do have endometriosis (only surgery can diagnose it for sure), as I have several symptoms and family history besides Braverman’s findings, I was not convinced it’s causing so much damage at this point. We did succeed in achieving 7 high grade blastocysts out of 10 eggs in our second IVF attempt, which is a quite good result. Our decision has then been to postpone surgery for now and give it one try with only the medications first. My endometriosis symptoms are not affecting my life too much at this point and if I can avoid another surgery it’s for the better. It also give us time to research our options regarding surgeons and costs. Braverman advised us to perform the surgery in his clinic, with his trusted surgeon, but as we would have to pay out of pocket for all expenses, this seems unlikely at this point. We are looking into other options within Europe.
  • HLA matches. My husband and I seem to share several HLA genotypes. This makes it harder for my immune system to recognise the pregnancy as such (instead of a threat) and put the protection mechanisms into play.
  • HLA-G mutation. I have a gene mutation which has been associated with a decreased capacity for the immune system to recognise pathogens (such as virus, bacteria, etc). It has also been associated with recurrent miscarriages. It seems the same mechanisms into play when identifying pathogens are used for recognition of the embryo. This made me wonder if this mutation could explain why I’ve been so sick so often during my childhood and teen years.
  • Several autoimmune markers. I have several genetic markers associated with autoimmune diseases, some of which I have already developed (psoriasis, asthma, Hashimoto’s/ Grave’s disease), some I may or may not develop in the future (Crohn’s disease, psoriatic arthritis, among others). This relate to pregnancy loss because, in simplistic terms, shows that my immune system is not great in differentiating between self and non-self tissue (thus the attacks on self-tissue, which characterises autoimmune disorders), which is an essential part to the process of recognising the developing embryo and activating the protection mechanisms.
  • Natural killer cells and cytokines. This part is very confusing. Some doctors believe NK cells can attack an embryo and thus are only interested in elevated levels of these. Braverman does not share this belief. He says there has been no scientific study to date showing such attack happening. However, he believes that unbalances on these cells and on certain cytokines (chemicals released by the immune cells by which they “communicate”) can be used to understand the actual state of a person’s immune system, giving “clues” regarding faulty mechanisms. In my case, I have several that are too low, several that are too high and some there are within normal ranges. He says it’s compatible with endometriosis, psoriasis and asthma.
  • Highly elevated anti-paternal HLA antibodies. My immune system seems always so slow and weak when reacting to infections, but it’s all too eager to develop antibodies against my husband’s cell tissue. This is quite important as Braverman believes these antibodies can effectively attack the developing embryo and placenta. However, even though I have very high levels of these antibodies, so far they don’t seem to be attacking (not complement-fixing, in the technical term), but Braverman is concerned they could switch into attack mode during pregnancy.
  • MTHFR mutation. I’m heterozygous compound (have one – out of two – allele for each mutation). This has been associated with increased risk for recurrent miscarriages. I already knew this from my own research and have been using methylated folate and methylated complex-B vitamins since October last year.
  • Elevated anti-thyroglobulin antibodies. This was seen before, during my last pregnancy, but never while not pregnant, until now. It seems I’m developing an autoimmune disease against my thyroid. It’s hard to say if it’s Hashimoto’s or Grave’s at this point, and my TSH is within normal ranges for now, but on the lower side. I’m not sure what to do regarding this besides keeping an eye on it. My body is able to counteract the attack so far and produce enough hormones.

These were the major findings. It’s not all bad news though, so for the record I’d also like to list some of the things that are not wrong with me:

  • No KIR genes
  • No APAs (and this time all 21 were tested)
  • No ANAs
  • No TH1/TH2 unbalance
  • No thrombophilia mutations besides MTHFR
  • Normal levels of homocysteine, vitamin D, proteins C and S

As we’ve decided not to have surgery for now, my reproductive immunology treatment protocol will consist of the following drugs:

  • Intralips infusions every 2 weeks from cycle day 1. This is meant to help regulate my immune system. Each infusion takes 2 to 3 hours and I may need to continue them throughout the pregnancy. I’m currently looking into my options regarding getting this treatment where we live, otherwise I’ll need to travel abroad every 2 weeks (which is far from ideal, but I’ll make it work if need be).
  • Low-molecular-weight heparin (Lovenox / Clexane) injections daily from ovulation. This is a type of anticoagulant. It’s meant to help with blood flow to the developing embryo. Mainly due to my MTHFR mutations.
  • Prednisone every day from ovulation. This is a corticosteroid, used to suppress the immune system. I was quite concerned about using this, as it can cause several unpleasant side effects and if used for long (over two weeks) can cause the adrenal gland to shut down, which can be very hard to recover from. Not to mention suppressing my already weak immune system, possibly leading to basically getting every bug out there. However, I’ll be on a low dose and when I realised this is in fact the same medicine I’ve used countless times before against strong allergic reactions, I was much more comfortable, as I know I don’t react very badly to it (though I’ve never been on it for longer than two weeks, I think).
  • Filgrastim (Neupogen) injections daily from ovulation. This is suppose to help with my HLA issues (matches, mutation and anti-paternal antibodies). It essentially forces the body to produce more of a certain type of immune cell, neutrophils.

Other recommendation from Braverman are to remain on a gluten-free diet (I’ve been on it for several months now), take methylated folate (also been on it for many months), take some specific supplements to help with the endometriosis (I’ve started on his Endo-optimize supplement and probiotics) and supplement with calcium while on prednisone. I’ll also be regularly monitored while on these drugs and need to rerun the immune tests after the beta result (no matter if it’s negative or positive).

The FET protocol itself will be a natural cycle FET. This means, there will be no hormonal replacement during the first part of the cycle. They will simply monitor my follicle with ultrasound scans until it’s big enough, then I’ll take a HCG trigger shot to force ovulation and the transfer will be scheduled to 4 days after that. I’ll supplement with progesterone gel after the transfer. This is the standard protocol on the (publicly funded) clinic we attend and they don’t steer away from their standards. It’s take it or leave it.

We’re taking it and hoping for the best possible outcome.

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These last months I’ve also been asking myself “what is wrong with me” in the context of blogging. So much has happened, there was so much I wanted to write about, but just couldn’t. Maybe I needed time to process my feelings. Maybe I needed some distance. Maybe I started to feel left out as seemly everyone I follow is either pregnant or parenting. So I’m sorry I haven’t posted in a while and I’m really sorry if I wasn’t commenting as much. But I’d really like to say how happy I am for everyone that is finally seeing their dream come true, and I wish you all nothing but the best, as you all deserve it so much!

Ups and downs

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These last few days have been full of ups and downs, not unusual for an infertile or recurrent miscarrier.

Down: A colleague from work, the one who forced me to tell my story because she wanted information on IVF, is visibly pregnant, probably 20+ weeks. She never told me about her pregnancy. She never said ‘I’m sorry’ for my last loss either – or any loss for that matter. Last week she found out the sex of the baby, so she brought a cake to work to celebrate. And she didn’t invite me. I’m guessing (from how far along she is) she never needed IVF after all. I finally realised she wasn’t going to say anything, so I walked up to her and said ‘Congratulations!’ with a big (half-fake) smile. She still didn’t acknowledge anything, nor did she ask me how I was doing. Too busy enjoying her pregnancy, I suppose.

Down: Another colleague opened up to me about recently finding out that the baby his wife is carrying has been diagnosed with Down syndrome. He doesn’t know about our struggles with infertility and RPL. I tried to be supportive and caring – and non-judgemental – in this difficult time for him. However, when he was sharing that he wanted to convince his wife to abort the baby (which is legal here in this circumstance) and she refused, he said something that felt like a sharp knife going into my stomach: ‘She can’t do it at this point in pregnancy (20 something weeks); it would feel to her as if she’s killing someone, like killing you or I, because she can now feel the baby’s movements. Now, the baby is its own person. It would be different if it was earlier in the pregnancy’. I froze at that moment, my thoughts going straight to ‘what about my babies? Does that mean they’re nothing? My babies don’t matter?’. I didn’t say anything, though.

Down: Due to some bureaucratic misunderstanding regarding our referral to the RPL specialist, I received a letter from the hospital in which our fertility clinic is located, saying I had voluntarily moved away from their clinic and switched to the new RPL clinic. This is incorrect, as I still plan on doing the FET on this fertility clinic (they have our embryos and it’s much closer to us). I was worried we would loose our public funding for the FET altogether, so called the hospital to clarify. After being passed around to different departments, repeating my story again and again, I talked to the secretary at our fertility clinic. She was extremely rude, saying (again) they will not support my treatment with the RPL specialist; but at least she confirmed I’m still registered as their patient and can have the FET any time I choose to. I had to made these phone calls at work, due to the opening hours, and after it I was having a mini meltdown and couldn’t stay at work, so I left early saying I wasn’t feeling well. I really think their attitude is unacceptable. Infertility and recurrent miscarriages are recognised by the government as chronic diseases. The offered treatments and clinics I’m attending are publicly run. Why should I feel like I need to beg and fight to have access to it?

Up: After some exhausting days, I really needed to relax and have some fun. Some friends from work came over and we had a girls night, just talking, eating cake and drinking coffee. It was wonderful. They are very supportive. We also vented our frustrations about work and laughed a lot. I need nights like that more often.

Up: Thursday was my husband’s birthday! We went out in the evening, after work, had a great dinner and watched ‘The Revenant’ in the cinema. It was wonderful. Food was great, movie was great and we didn’t talk about infertility. We always enjoy ourselves when we go out on a date night.

Down and Up: Friday I went to the hospital to do the Aspirin allergy test. I was really scared I was going into anaphylactic shock again, since I’ve had it twice when I was a kid, both times from Aspirin. How would you feel if you doctor offered to give you the same substance you almost died from twice before? I was freaking out. I barely slept the night before, thinking I shouldn’t have had those 2 glasses of wine during dinner (it was hubby’s birthday, though!). Before starting the test, they took my blood pressure and it was too high. They said if I don’t calm down and my blood pressure decreases, they couldn’t proceed. I wanted to do this, so I can have more painkiller and anaesthesia options. I kept thinking if I need to go through another miscarriage I want better drugs to manage the pain (I don’t react well to opioids as they make me sick, so I end up preferring the pain then throwing up all the time). And baby Aspirin is often used to treat RPL. I tried my best to control my nerves and was able to complete the test. It took about 6 hours in total. I had no reaction whatsoever. The doctor said they don’t know why. Maybe I reacted to some other substances in the pill, not the Aspirin itself, when I was younger. Or maybe I just grew out of it. I’m now allowed to take anything, but I think I’ll still be afraid for the first couple of times. If only I had done this test earlier, I wouldn’t have gone through 20 years of drug-free painful periods, muscular pains and headaches. Well, better late than never.

Up and down: Sunday we celebrated my husband’s birthday with some friends at our place. It was just an afternoon tea with hot-dogs and brownies, but it was so nice spending time with friends, talking and playing board games. I was a bit nervous about it, as I hadn’t seen my pregnant friend in over a month. I just have a hard time being around her due to her pregnancy being so close to my last pregnancy. We talk a lot on the phone and text each other, but when her huge belly is staring at my face it’s much harder for me. She’s quite nice about it most of the time, I think she understands it’s not easy for me, even though we never really talked about how it makes me feel. Her husband, on the other hand, is much less caring. He often times says or do things that are hurtful to me without noticing. This time was no different. At some point, my friend and I were sitting side by side just talking normally, when he came over and started rubbing her belly. Somehow, I never see him rubbing or kissing her belly unless she’s sitting right besides me. Then he does it all the time. I’m sure it’s not on purpose, but can’t he really see how uncomfortable it makes me? Well, my friend feels uncomfortable too, so she removes his hand and tries to gently push him away. And he starts a small fight, saying: ‘Why are you pushing me away? It’s my baby too, I can touch it whenever I feel like it.’ What else can I do in these cases but to get up and walk away? Why can’t even my closest friends, who have watched me go through all of it, understand how difficult it is, how their small actions affect me? I wish they didn’t, I wish I could touch her belly and feel excited too. But it’s impossible for me to not feel sad for what could, should, would have been.

I hope the days to come are filled with more ups than downs.

New plans, new hopes, new worries

Since the somewhat disappointing lecture by the local RPL specialist, I was left feeling this path wouldn’t lead me to the answers and results I was looking for. Of course, I’m rational enough to admit that it’s way too early to say if this doctor can help me or not, and these feelings are probably resulting from my general distrust in doctors (caused by recent repeated bad experiences). 

Wouldn’t it all be much easier if I just let go and trust that this doctor has my best interest at heart and he’ll do everything possible to help me? Yes, certainly. Unfortunately, I’ve been through enough to know I must advocate for myself; or maybe I’m just a cynic distrusting person that adds unnecessary angst to my own life. Take your pick.

After feeling miserable for some days, I decided to pursue other options. I’m going to my home country to see another reproductive immunologist (RI) for a second opinion. Yes, it’s crazy to go after a second opinion before even hearing the first opinion, but I just can’t sit on my hands, watching time pass by, hoping for the best, any longer.

Originally, our plan was to visit my family in late May. My father is turning 70 and my mom is organising a huge party. We thought of staying for a couple of weeks and seeing the RI in this time. He offers lymphocyte immune therapy (LIT), which seems to not be available here, and I was hoping I could get at least one dose during those weeks. 

I contacted the doctor before booking my flight, as I wanted to make sure we would stay there for enough time to allow tests and possibly this treatment (if at all necessary). They explained that I could do the tests and have the results in one week, however the LIT treatment usually consists of 3 doses taken 3 weeks apart. Since the “medicine” is essentially my husband’s filtered blood plasma, this meant we both would have to stay for a minimum of 7 or 8 weeks. We obviously don’t have enough vacation days for that. Again, the helpless feeling was taking over. 

I thought about it. Staying away for a couple of months started to look plausible. We would be staying at my parents’, so virtually expenses free, and we have enough savings that taking a 2 months non-paid leave at work wouldn’t be so strenuous financially. As long as we can arrange everything with our bosses in good time, it’s probably not a big issue. If that’s what it takes for us to achieve a healthy pregnancy, it’s certainly a small price, all considered.

Moreover, several weeks of stress free ‘vacation’ might even help me. Turning it around and taking this time to relax and maybe even travel a little with my husband just before we embark on the trying-for-a-baby train once more, might just be what I need. Or at least that’s what my counsellor keeps telling me.

A few days after the new clinic’s info meeting, I had a session with my therapist. Seeing how unwell I was, she again suggested I take a short leave of absence from work in the basis of stress. She’s been trying to convince me for a year now and I keep refusing it. I know how stupid it sounds that I’m literally paying her for her expert advice but refusing to follow it. 

I don’t know why I can’t let go. I tell her it’s because being off work would only be a short term relief and as soon as I would come back, the stress would come back; unless a long-term solution for my problem (a healthy pregnancy or a decision to stop trying) presents itself in the meantime, which is very unlikely in the next few months, as we won’t probably have our FET until June. She tells me, you admit it will help you now and that’s what you should focus on, how you can get better now. We will see how it goes after it when we get there. She’s right, but not convincing enough. It sounds like palliative relief and not a solution.

Another reason for my refusal is fear of failure. Or admitting failure. I already have enough feelings of failure, thanks to RPL and infertility: failing my babies, my husband, my friends and family, etc. My job is, in a way, the only aspect of my life not (completely) falling apart; the only part I can feel (or pretend) to be my old self, before all of this. It’s hard giving that up. Even though, in all honesty, it’s nothing like 3 years ago. My relationships at work are everyday more strained, my motivation is low and although my performance is still remarkably high (or so my boss keeps telling me), it has significantly decreased (or so I notice). 

Well, being ‘forced‘ to stay at my home country for 2 months for medical treatment would allow me to stay away from work for some time guilt free. I might be addressing two issues with one blow.

With this new perspective in mind, we decided it’d be OK to stay so long, but we need some time to prepare for it. So we booked a consultation and our flight to Easter week. We’ll run all the tests and it will give us enough time to compare the recommendation of this RI with the local specialist’s and make a decision, before May, if we should pursue LIT at my home country (in case the test results say we need it).

There’s, however, another source of worrying with this plan (well, more than one, considering my relationship with my parents’ and my sister being somewhat complicated and living at my parents’ for so long not an easy task). My home country, being in South America, is infested with Zika virus. I’m sure by now everyone have heard of the correlation between Zika infection and babies being born with microcephaly, encephalitis, stillborn and miscarriages. Since it’s a new discovery, there are no cures and no vaccines yet and doctors can’t even say for sure for how long after an infection it would still be dangerous to attempt pregnancy. The current advice is to wait 2 months. 

March til May is the raining season in my hometown, which means mosquito season. Right when I expect to be there. Zika is transmitted by the same mosquito that transmits Dengue (a more dangerous disease than Zika, but not especially threatening to unborn babies). When thinking about how widely spread Dengue is, and how virtually everyone I know have had it at one point or another (I’m one of the lucky few to never have gotten it), it scares the hell out of me how easy it probably is to catch Zika. However I can also turn it around and realise we never got Dengue when visiting my family, even though we never used any protection against mosquitos.

We are only staying for a week at first (Easter) and I’ll cover myself top to bottom in repellent. We are also not having a FET in less than two months after we’re back, so we believe it’s a small risk. 

In case we’re unlucky enough to catch Zika and it somehow impact our future child (many may have Zika during pregnancy and still have healthy babies), I’ll probably never forgive myself for taking this seemly unnecessary risk. But is it really fair? Aren’t we risking ourselves to getting hit by a car every time we walk on the streets or dying on a plane crash each time we fly? We can’t control these events any more than I can control the outcome of my pregnancies (with or without Zika), so I’ll bathe in mosquito repellent and hope for the best during that one week. A longer stay poses a higher risk, but we decided to discuss it with the doctor over there before making our final decision.

In case you’re wondering why would I trust this RI any more than I trust the local specialist, I’ll answer you sincerely: I don’t. And because of that, I’ve also booked a free 10 minutes Skype consultation with Dr. Braverman (considered by many the best RI in the world). I want to hear his opinion on my case and what are the opportunities for long-distance treatment. I’ve also started on my US Visa application, in case we decide to go to NY to be examined by him. 

In short, here is where we stand now: plan A is still to pursue treatment with the local specialist, since it’s the best option from a practical and financial point-of-view; plan B is to complement with other treatments in my home country, if necessary; plan C is to go after Dr. Braverman, in case the other treatments fail. 

If I seem desperate, I probably am. 

Insomnia or reality?

 

It was the end of 2012 and we were still living in Beijing, China, but with everything ready to move back to Scandinavia: work contract signed, apartment rented, air plane tickets bought and all our stuff packed up and ready to be shipped across the ocean.

We were excited to be coming back and ready to leave that two-year adventure behind and start a new one: a family. I’ve already been looking at houses and station wagons for sale and had started taking folic acid supplements, so the next logical step was to stop taking the birth control pill.

Arriving here, just before Christmas, there was so much snow everywhere it made everything a little more hectic; yet the purity and silence of fresh snow matched perfectly the idea of a new beginning.

Those first months were nothing but crazy: new jobs, looking for a house and a car, discussing loans with banks, insurances, buying furniture, unpacking… There was little time to worry about not getting pregnant, though it didn’t stop the disappointment of getting my period every month.

By April, we were settled on our new 4 bedroom house with a big backyard, furnished and decorated, ready for this family to get started, but without a pregnancy in sight. My periods were just getting longer and longer every month and already reaching 40 days. That was the time I started worrying whether I was even ovulating and decided to see a doctor for advice.

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This is how our journey to parenthood started. In November 2013 followed the first pregnancy and first loss, with such raw emotions that can only be lived once.

Today, over three years after those dreams started to materialize, I found myself in the same, yet new, situation: same house, empty ‘baby room’; same grassy backyard without flowers; same car, without a baby seat; same employer, same job; same marriage.

The future I had envisioned when dreaming of returning to Europe was another; one with a beautiful crib in the next door room to ours, with a doll house in the garden, with toddler laughter and Lego pieces all over the floor, with lazy Saturday mornings of cuddles in bed and pancakes for breakfast.

As my old friend insomnia makes herself comfortable in my bed again, I search for books to keep me company during these too early hours of the day and run into “The Book of Disquiet”, from the great writer and poet Fernando Pessoa. Considering purchasing it, I find a passage that seems to describe this moment in my life so perfectly:

[Life is] the waking insomnia of [our] dreams. 

Laying awake in bed or fulfilling my duties at work, I’m only truly waiting; anxiously counting the days and years as the insomniac counts the hours; hoping I can soon return to where I really want to be: in my dreams. Those dreams I still hold on to since 2012.

Will somebody help me fall sleep?

Everything’s fine

 

Atacama desert, Chile. If even the driest place on Earth can bloom with some rain, won’t by barren womb nourish a baby to term with the right help?

 
During our last appointment with the RE, when our baby was confirmed dead, my husband and I had our blood drawn for RPL panel testing. We have an appointment with the RE to discuss the results on December 15 (and hopefully get a referral to the only Reproductive Immunologist in the country). 

However, the results are already in and available online, on the health system website. This is what I can see:

  • Beta 2-glycoprotein 1 Ab IgG: 2000 e/L (ref.: below 10000)
  • Beta 2-glycoprotein 1 Ab IgM: 2000 e/L (ref.: below 6000)
  • Cardiolipin Ab IgG: below 1000 IU/L (ref.: below 10000)
  • Cardiolipin Ab IgM: below 1000 IU/L (ref.: below 10000)
  • C-reactive protein: 1.8 mg/L (ref.: below 6)
  • Coagulation factors II, VII, X: 0.87 (ref.: 0.70 – 1.30)
  • Karyotype: normal (both mine and my husband’s)
  • Lupus anticoagulant: 0 (ref.: 0)
  • Prolactin: 21 ug/L (ref.: 2 – 23)
  • Anti-thyroglobulin Ab: 1.1 IU/L (ref.: below 0.7)
  • Thyroidperoxidase Ab: 8000 IU/L (ref.: below 11000)
  • Thyrotropin (TSH): 1.9 mIU/L (ref.: 0.3 – 4.0)

I was very surprised about the anti-Tg result. My thyroid levels has always been normal and I’ve done this test before in January, after the third loss, and results were normal. This sparked many questions on my mind:

  • Could this result alone explain our losses?
  • Does it mean my metabolism is not able to handle pregnancy or is it an indication that my immune system is overly active?
  • Are these results even ‘abnormal’ enough to mean anything?
  • What would possible treatments be? Thyroid medicine or something else to calm down my immune system?
  • Were the results abnormal this time because I was still technically pregnant (though the baby was dead) when the test was run, or is it because my immune system is becoming more aggressive at every pregnancy?
  • Is this a new clue or the answer we have been looking for??

I can’t really compare the two results, from January and October, because it seems the test methods are different. My result from earlier was: below 1.0 IU/ml (ref.: below 4.11 IU/ml). 

All these questions dissipated when I received an email from the RE. It was very short, simpling stating: all results are back and are all normal. In other words, everything is fine, it’s just bad luck, just try again.

I’m not sure what to do with this. I can’t hear it’s just bad luck any longer. I need answers. I need solutions. I need a plan that consists of more than just try again. I’ve played in this casino for too long now, I need to know my real odds, I’m tired of playing blindly.

I’ve done everything doctors have asked of me. With my other losses, they insisted I was not a ‘recurrent miscarrier’ because I hadn’t lost enough babies to qualify. They blamed my egg quality and recommended IVF. I followed through and after very good fertilisation rates and 6 high grade blastocysts and another loss, they’re running out of excuses. Though they keep insisting everything’s fine. Fine to whom?? 

I’ll call the fertility clinic Monday morning and try to reschedule the appointment to this month. Then I’ll push for that referral. They can’t say no, I fulfill every criteria of their own stupid rules. I’ll keep fighting for an answer because there’s nothing else I can do. 

I can’t just try again, when I have no reason to expect a different outcome for my babies and I can’t keep being responsible for their deaths. It’s weighting on my conscious, not the RE’s. So everything’s NOT fine.

Family matters

  

When I think about my infertile condition, it hurts… In contrast to my seemly super-fertile family, it hurts much more. 

My paternal grandmother gave birth to 16 children, 14 of which reached adulthood. The two toddlers she lost (her first and her third children) were taken by (at the time) common childhood diseases, such as tetanus and diphtheria. Think of rural South America about 80-90 years ago. There’s no vaccination and no doctors. 

Loosing infants was so common, my grandpa would usually wait at least a couple of years before registering the kids. After all, they had to be registered in the nearest village, about 150 km away, which was a long journey by horse carriage. There’s a funny anecdote about this. My grandma would dutifully write down each child’s birth date and name on a piece of paper each time my grandpa went out to register them. Once, he screwed up and ended up registering two of my aunts with only 4 months difference, when in reality they have 1 year and 4 months between them. My aunt is still (and always will be) 1 year older on any of her documents than she ought to be.

I’ve also heard stories of first trimester miscarriages between births, but have no idea how many my grandma endured exactly, as these things as shushed about and are just a normal part of life (right?). 

My grandma’s last daughter was born when she was already over 45 years old. Considering she got married when she’s about 17 or 18, she spent all of her childbearing years either pregnant or breastfeeding (or both). And she must have been pregnant about 20 times or more. 

Before you make the didn’t they have a TV? joke, let me answer you. No, they didn’t. They didn’t have birth control either. I know there are some TV shows nowadays romanticising the idea of very big families, but let me tell you, they are really not that easy or fun. I’m pretty sure my grandma would have chosen a different life if she could. Being very faithful to her Catholic Church, she was suppose to carry every child God sent her, and so did she. No questions asked. 

Each of her 13 surviving children got married once or more and had an average of 3 kids each (my father had 4). One of my uncles died of brain tumour in his early twenties, before bearing any children.

My maternal grandmother, on the other hand, gave birth to 14 children. She was much more fortunate to live in a bigger village with access to medical care and better means, so she didn’t loose any infants. She did have the usual miscarriages, which are, as you know, just a small ‘side effect’ of motherhood. Again, I know no details on these ‘insignificant’ women matters. 

She passed away of heart attack still young, on her early forties, when my mom was only about 20-something years old and her youngest brother was about 1 and a half. If it wasn’t for this unfortunate accident, she’d probably have had a couple more children before reaching menopause. Again, no TV, no birth control, faithful Catholic wife. 

Out of her offspring, two sons died before bearing children (cancer and kidney failure) and one son is gay (and only very recently homosexuals are allowed adoption or IVF in my home country, so he never had a chance). Ten others went on to get married and had an average of 2 children each (my mom had 2).  

It goes without saying that my family is huge. People here in Europe tend to be amazed by this story, but in my home country it’s not that uncommon (not so common either). If you did the math, my immediate family consists of about 90 people. Adding step-children and the 4th generation (my cousins’ and siblings’ children) it easily reaches and surpasses 150. 

Of all these people, I only know of 3 who struggled to conceive. My maternal aunt, who had a hysterectomy in her twenties (no idea of the cause, maybe endometriosis), my cousin who fought PCOS and myself. My aunt raised three step-daughters from very early age, my cousin had a daughter with help of IVF and I’m still fighting in the trenches. 

Statistically, at least 10% of all child-bearing age people are infertile. So there should be no less than 10 infertiles in this bunch. Conclusion: my family is super-fertile, besides this (un)lucky one. 

Can you imagine how lonely these thoughts make me feel?

Another very reasonable explanation could be that I simply don’t know of more cases because infertility and pregnancy loss are not discussed openly. Not even between immediate family members. And that only feeds the loneliness. I believe people prefer to stay away from these subjects, hoping that by avoiding them they are saving me pain. On the contrary, it only adds to it. 

I’m open about my struggles and that makes a lot of people uncomfortable. I don’t care, I won’t let this silence perpetuates, it only makes grief harder than it has to be. 

My grandmas had much of what I desire the most: children. However, in so many ways my life is much easier than theirs and I’m much more fortunate: I have a caring husband, who loves me and isn’t afraid to show me his affection (something my grandmas couldn’t even dream about), we have good jobs with decent salaries, a nice house with a big backyard and a car, access to medical care and we even get to have wonderful vacations every year. 

My grandmas had lives full of hardships and difficulties, the only highlight being their children. I’m very grateful for all the great things I have, but the gift of motherhood is still my greatest desire, for the same simple reason it brought happiness and purpose to my grandmas’ existences: children unconditional love.

My biggest fear

 

Source: gratisography.com

 
I used to think of myself as pretty much fearless. Very little scared me and I loved to take up a new challenge or adventure, such as moving to new countries or travelling to remote, exotic locations. 

But the last three years (and four losses) changed me in so many ways and I now have a whole bunch of fears to keep me up at night: fear of never succeeding in having a living child, fear of my marriage being destroyed by all the heartache, and the worse of all, fear of loosing myself while trying so hard to achieve my desire of motherhood. 

However, these are not the fears I want to write about today. It’s a much different and more urgent fear. It’s about this baby I’m still carrying. 

Before I get to it, I want to tell the story of this pregnancy. This baby was conceived in a petri-dish, unlike the others before him, which were conceived naturally. It was my second fresh IVF cycle and just like with every other pregnancy I had, I just knew I was pregnant, days before I took any tests. I know it sounds crazy, but somehow I can just feel differently, like my period is not coming and I can feel it especially on my breasts. I joke with my husband that I can guess my HCG level from my breasts size and tenderness. 

This time was no different and besides the fullness of my chest I have had a tiny bit of implantation bleeding, right on the ideal day for implantation, just to add to my certainty that I was, indeed, pregnant. Despite all of this I was extremely nervous when 13dpo came around and I decided it was time to test. 

It was a Saturday and I got out of bed early, hoping to not wake up my husband. I peed on the test, marked 5 min in the phone timer and waited. I was hoping for a nice and clear line, but I got the faintest of all. I looked at it and couldn’t bring myself to be happy, because I was too afraid it would be a chemical. My husband was up and came to ask what was the result. I showed it to him and asked him to buy a better quality test, more trustworthy than this internet cheapie. I took the other test and it was also positive and also faint. 

Next day, I took another test (actually several), which I continued doing every morning for many days. I was hoping to see it double in darkness as should the HCG levels double every 48-72h. They were getting darker, but I was not convinced it was happening fast enough. 

My blood test day with the IVF clinic was Monday, so 15dpo. I didn’t get the result until Tuesday afternoon. I had been feeling very uncomfortable the whole weekend until that day, my belly was as bloated as a ballon, I looked about 5 months pregnant and could truly feel the skin in my belly stretching out. I never had this with any of my other pregnancies. 

When the nurse finally called, she first asked me: are you bleeding? Which upon hearing no for an answer went on to say: That’s good, because you’re pregnant. I thought the whole conversation was upside down, but I often have small cultural clashes, so maybe that’s just another example. I guess she was expecting some happy response from my side, but all I could say was: what was the level? I had promised myself that if it was higher than 80 I’d stop worrying. So when she replied 80 I didn’t quite know how to react. She proposed a time for my first scan, when I should be 7 weeks and I told her about my symptoms, feeling bloated and with some pain. She scheduled for me to see the doctor the next day, to assess if I was having OHSS. 

The doctor did an ultrasound to look at my ovaries, which seemed very large and full of cysts. She explained it was quite normal, a side effect from the treatment and it wasn’t serious enough, as I only had little fluid on my abdominal cavity. She could also see what seemed like a small sac formimg in my uterus, which immediately calmed my fears of another ectopic, so I was very glad for that consultation. She went on to say that this reaction is very common after a positive pregnancy result, it’s triggered by the pregnancy hormone. I actually already knew all of that, was just looking for some reassurance. Which I got when I heard her comment: it’s usually the strong pregnancies that cause this effect. Right there and then I decided to stop worrying and embrace this pregnancy. Love my baby wholehearted as he could be taken from me too early. 

And so I did. But I couldn’t stop testing every morning. The next week during my acupuncture session, the acupuncturist said she believed everything was going very well and I nodded and commented how I was feeling very positive. 

Everything changed on Saturday morning. I took another test and realised it was not getting darker anymore. All my fears took over and I started crying in disbelief that I would loose another baby. My husband found me crying in the sofa and asked what was wrong. I explained it to him and continued to cry. When I decided that was enough self pity and went to the bathroom to wash my face I found my husband crying in the bed. It broke my heart seeing him like that, again. I told him we shouldn’t trust these tests, they were not accurate enough for the use I was giving them and maybe the concentration of my urine varied enough to affect the results. We shouldn’t give up so early, there was no hard evidence until the scan. Suddenly I found myself so many reasons to not give up, all reasons I couldn’t see just minutes ago. But my husband replied, I’m crying because I don’t know how to help you. That touched my heart deeply and I thought, I need to stop worrying and pull myself together. I’m driving everyone around me crazy. 

I still continued testing for a couple more mornings, but seeing that the lines wouldn’t get darker, I gave up and chose to believe everything was fine. As if it was that easy. My anxiety and fear persisted, fed on bad dreams and bad memories. 

Until finally scan day arrived. I woke up that morning and remembered my dream from the night before. I dreamt we had the scan and the baby was fine and we saw the heartbeat. I got out of bed feeling unusually optimistic and decided to take another test. I haven’t tested in about a week or more. The test got positive very soon, just a few seconds after testing and it was the darkest ever for that pregnancy. It was just what I hoped for and gave me even more hope. 

We arrived at the clinic and were soon called in. The doctor asked about symptoms and bleeding and told me to undress. I laid down with my legs up on the stirrups feeling my heart jumping out of my chest. This doctor was my favourite and she looked right into my eyes and said, I will look around by myself first and then I will show and explain everything to you, ok? It was fine for me, as I had a big screen right in front of my face and trained eyes that knew what to expect and what to look for. But all I could see was a small sac in my uterus, which looked way too small for seven weeks. The doctor zoomed in on it, still not saying anything, and I couldn’t find the embryo nor the heartbeat. 

Neither did the doctor. She started by saying I should be seven weeks and by this time she would expect to see an embryo. She then showed me the gestational sac with the yolk sac inside and said she couldn’t find the embryo and that the sac looked more like a 5-6 weeks pregnancy. I don’t remember if she said I’m sorry. But she did say she didn’t think this pregnancy was viable. I haven’t started crying at this point, just felt completely numb. Can’t say I was surprised, just numb. I got up and put my clothes back on. The doctor repeated the baby was too small and she didn’t think it was viable but needed another scan to confirm it. I replied, I know, this is the third time I go through this. She was surprised to hear, but I wasn’t surprised she didn’t know or remember my history. We talked a bit about my options, though she didn’t want to discuss much before the second scan.  I left crying and feeling heartbroken. 

Back home, I couldn’t stop obsessing about how my pregnancy symptoms were just getting stronger. I’ve had two missed miscarriages before, so I know the symptoms don’t disappear so quickly, but I never felt them getting stronger still. Just the same or a little weaker. That made me think: this baby is still alive. 

That brings me back to my biggest fear at this moment: I’m afraid in the next scan the baby will have grown. Not enough for the pregnancy to be believed viable, but enough to know that the baby is still alive. And I’m afraid the doctors will push me into ending this as quickly as possible. But for me, there’s a huge difference between helping my body expel a dead baby and killing my baby. Viable or not, the guilt will consume me. I know that because it has already happened to me during my ectopic. It didn’t matter that that pregnancy was impossible to survive, I loved that baby with all my heart and it felt as if I was killing him to save my life, while I believe my job as a mother is to always protect my children and put them first. 

I don’t expect everyone to agree or even understand this. I know people have different opinions and feelings on this matter. I also don’t think there’s right or wrong, it just how I feel and I needed to get it out of my chest. 

Please also don’t assume from this that I’m pro-life, I’m actually a firm believer in pro-choice. I don’t judge anyone else, as I think every situation is unique and that’s just one of the reasons I believe everyone deserves the right to make their own choices. I just want to not have to make the choice of ending the life of another one of my babies, again.