I sit here on a Sunday afternoon. My 3 boy angels are out for some ‘boyz time’. This blog post has been a long time coming. I think mostly as a catharsis and hoping that it will help someone in a similar situation. This is a very candid account of what we went through, no sugar-coating here.
Izaiah is the result of a 3-year struggle with infertility. Nine IUIs (inseminations), one failed In Vitro attempt, five miscarriages, one ectopic pregnancy, emergency surgery, needles, hormones, steroids, blood thinners, a rainbow of emotions, marriage counseling, and faith that we’d get there, eventually.
When Steven and I got married, we knew we wanted a child, or two. He was 38, I was 34. We were blessed with Liam, my pride and joy, and Steven had taken on the step-dad role head-on. But he desperately wanted (needed) to ‘make something’ with his own DNA. We figured it would take a few months of trying and it would happen. Not once did we think otherwise. A few months later, we got referred to a fertility clinic and made an appointment for six months down the road, thinking we wouldn't need to go because we'd be pregnant by then.
The appointment rolled around and on we went. The standard battery of tests was done. We assumed it was thorough. Treatment began and the journey started with our first insemination cycle. We were with this clinic for over 2 years, during which we did 9 rounds of IUIs and one In Vitro attempt. Five of the IUI's ended in miscarriages and one ectopic which landed me in emergency surgery. But I’ll come back to that. The In Vitro attempt also failed.
During those two and a half years, I was given a variety of drugs and hormones. Routine tests were repeated on an annual basis.
Steven and I were doing a lot of reading, asking questions, always wanting to fully understand what was being done and administered on a medical level. There seemed to be a pattern in terms of how and when the miscarriages were happening. Yet, our doctor didn’t seem to think that was an indication of another problem.
We got tired of asking if there were any other tests that could be done, if there was something else that could explain this pattern. We felt we were being pacified with ‘all tests are current’. I was told I had a ‘luteal phase defect’ and my eggs were most likely in poor shape. Oh right, I was 36-ish. Steven's boys were in great shape, but he was a 'low volume' kinda guy. ‘We’ll try different drugs on the next round’ seemed to be the answer. Yay.
We sought a second opinion. At our first appointment, this second clinic ran a routine ultrasound on me. Nothing abnormal was detected. Three days later, after a morning of pain in my lower abdomen, Steven insisted I go to Emerg and a ‘mass’ was detected on my left tube via ultrasound (a mass with a heartbeat, which I heard; that sound we had been longing to hear for two years). Surgery confirmed the mass was an embryo growing in my left tube, which had ruptured leading to bleeding into my abdomen (one pint of blood later). Tube and embryo were removed. Rewind to that ‘routine ultrasound’ three days earlier, how does a mass on my tube go undetected?
After my ectopic, a third doctor was referred to us. I wanted his expert opinion more than I wanted him to take me on as a patient. I asked him to look at my history and tell me his thoughts. He looked at my entire file (I had pieced together a copy), and after 14 minutes, looked at me and said, “If it’s broken, don’t try and fix it. I would start looking into adoption. You will most likely not be able to carry a viable pregnancy to term“.
“Pffff!!” Is what I thought. I walked out of there completely un-phased. I was not in denial. I simply knew in my gut it couldn’t have been further from the truth.
Meanwhile, we decided to graduate to In Vitro. It was the next logical step at this stage. After a few months of recovery, we proceeded with another aggressive drug treatment, egg retrieval, fertilization, ICSI and insemination. We waited 5 days on pins and needles and hoped. It failed.
And then we hit a wall emotionally. But I’ll come back to that.
A relative had told us about another doctor who had a 'different' approach. We booked an appointment for 6 months later and waited. It allowed us a much-needed break. We were broken.
We met with this new doctor early December 2012. He explained he worked closely with a clinic in California, which specializes in reproductive immunology [note: this testing is not available in Canada]. He looked at our file and history and told us we were perfect candidates and explained why. This ‘pattern’ I mentioned, showed a high probability of an autoimmune issue. His conviction was contagious. For the first time in a while, we left an appointment with a renewed hope that we were getting closer.
After testing, results showed that my Natural Killer Cells were off the charts, as well as some other indicators. My immune system was possibly responsible for killing off the pregnancies. The same way your immune system can reject an organ transplant; mine was rejecting the part of the embryos that was Steven.
I underwent 2 treatments to suppress my immune system. The plan was that after confirming that the treatments had been successful, we would proceed with In Vitro.
Now here comes the good part: we didn't even get there. A few weeks after treatment, I got pregnant naturally.
Forward 14 months, and here we are.
This exhausting yet intensely transforming experience has impacted us both in so many HUGE ways. Not sure whether I am writing selfishly for some cathartic closure, or it is the overwhelming need to help other people walking in our shoes.
When I met Steven, he was very articulate about needing to be a dad one day. We talked about it often. His eyes would light up the minute he would go off on ‘wanting to take his kid to a basketball game’. I knew I wanted to be there to see it when it happened, in the biggest way possible. Plain and simple.
Mom (my mother in law, but she’s mom) posted on Facebook recently (and made me melt into a mess of runny mascara and eye-puffiness) that when she would ask me why I am still continuing forward (after a couple miscarriages), I’d answer “I want to make Steven a dad”. That was pretty much it.
However, some times were hard. Very. F**king. Hard. Moments when my mind tortured me were frequent, and although I never felt any of this was my fault, I thought of horrible things, like would Steven be here had he known about this ahead of time? If this doesn’t work, will our marriage survive it? At times, I doubted how strong we were as a team. And I knew he did too. Let’s be honest, times got very dark.
I would run into people and stand there mouth open not knowing what to say when they would ask, “so when are the babies coming? You need a little Steven running around!”. And why should I explain to you that I’m recovering from my 3rd miscarriage? Sorry. I am an open book, but I resented being put in a situation where I had to explain. I was also taking high dosages of steroids. The combination was lethal.
The monthly disappointment, the 3-hour doctors appointment 2-3 times a week, being poked and prodded… Hearing “everything off from the waste down, on your back, feet up” was like “good morning” to my ears. Peeing in cups, surgery, biopsies, one D&C (fun times!), needles, needles, everywhere needles. Severe side effects (I’m talking PMS on speed, along with fatigue, nausea, bruises, bloating, extra facial hair, self-injecting 3 times a day – oh the joy…)… My once hot little body morphed into this not-so-hot foreign thing I really wasn’t too fond of. The fear, the emotional drainage, oh and did I mention the THOUSANDS of dollars this cost?
We felt like our life was ‘on hold’, unable to make plans… (do we book a holiday over Christmas? What if we’re pregnant? Should we start looking for a house yet?). The only thing we were planning was our sex life. Intercourse had become a baby-making scheduled occurrence.
All of it took its toll.
Steven and I had already gone through some hurdles. Our relationship had gained momentum. We were a solid team. Yet, after 2 ½ years of this, we were at a standstill.
We were miles away from each other emotionally, each one of us dealing and grieving alone, each trying to cope with our stuff individually, not wanting to burden the other. By doing so, we were drifting away from each other. Mix in the stresses of every day life (our lives, stressful? Pfff! No way!), feeling like our needs were not being met and with that brews resentment, a bit of anger and a whole lot of sadness.
But no matter what, we pulled ourselves back towards each other, intertwined as always, and plowed forward. Counseling became crucial and allowed us a forum where we could spill the beans and listen to each other without things escalating. Humour became our most therapeutic tool. After all, I married a 5 year old wrapped in a grown man's body, bless him and his comedy. He delivered it, and I was, as always, his best audience. Our sick minds found humour in things like miscarriage. Yup.
We grew more appreciative of how fortunate we were to be able to afford this. Throughout the three years, we spent upwards of $80,000 on procedures and drug treatments not covered under government healthcare. What about all those folks out there who can’t? That want a child as badly as we do, who’s dream is to create a life and love it and nurture it? What do they do? Give up? The thought that this was the reality thousands of couples were facing broke my heart.
[Side note: The average cost of one IUI cycle is $2,500 and the average cost of one IVF cycle is $13,000. This does not include all the other meds and procedures you and your partner may need that are not covered. Chew on that.]
But most importantly, we wanted to have a child together more than anything. In all of it, we always continued to believe it would happen. In the craziness of our busy lives, we found time to stop, recharge, regroup and reconnect. We remembered there was nobody else either one of us wanted to do this with or for.
We started being open to exploring alternatives like adoption, egg-donors, surrogates, etc. We got through it, we got closer, we got stronger. And we got our miracle.
Now as we cruise through the jaw dropping experience that is bringing a child into the world, I do it with the joy of watching Steven discover fatherhood and Liam melt into his big brother persona.
Throughout all this, we spoke to a good dozen friends going through this. As unique as our journey was to us, it really isn't. Couples experiencing this are everywhere. People are having children later in life. And that is only one of hundreds of factors why people are living with infertility. Steven and I learned a lot and gained a lot of comfort in sharing this knowledge and wisdom with others.
A few things I’ve learned…
Ask questions, know the names of all the meds you are taking, what their purpose is, monitor the side-effects. Don’t assume anything. Read, read and read more. Don’t be afraid to call your doctor on stuff if you are questioning something. They are doctors, not gods. I was the one to tell my doctor I should be taking Co-Q10, one year into treatment. "Oh right, I forgot to mention that! Stupid me!". Fo'realz?!? Had I not done my research, I wouldn’t have known.
Know your body, trust your instincts. If something doesn’t feel right, it usually isn’t.
Keep logs. Yes, it gets that complicated. I made spreadsheets. Excel is my friend. It will help document your file, should you need to take it to another doctor.
Know that you have options. Seek a second, third or fourth opinion if something doesn't sit right with you. The causes of infertility are very often unknown. A diagnosis or 'reason why' is often put forward based on deductions (gathered through factors like age, lifestyle, prior medical history, etc) and elimination process. Very often, they really don't know for sure what the cause is. Therefore, don't assume that the next doctor will not see your situation under a different light and offer a different insight. He just might.
Know your limits, emotionally and physically. A close friends would ask me “Alex, how much more are you willing to do?” My answer always was “The day a doctor will tell me 'You will not carry a pregnancy for such and such reason' and I will believe it, I will look at alternatives. That hasn’t happened yet.”. Figure out where you need to draw the line in terms of how much physical and emotional 'hardship' (can't find a better word) you can handle. Discuss it with your partner. Figure out what your 'plan B' is if plan A fails.
Find humour, comfort and beauty anywhere you can.
Story: The LIT treatment I mentioned earlier consisted in isolating Steven’s white blood cells and injecting them into my bloodstream through a four-hour IV drip, so that I could become 'immune' to him. I found it incredibly romantic. I would forever have some of his blood flowing through my body. Through this cold medical process, it brought me comfort to think of that, and made the four-hour IV a piece of cake.
Laugh at the fact that the hormones are turning you into a psychotic nutbag. Laugh it off. Trust me on this. It’ll also make it way easier on your family who are dealing with your sorry hormonal a$s.
People who care and love you will say things like "It wasn’t meant to be", “It will happen soon”, “the timing wasn’t right”, “stop stressing about it, it will happen when you least expect it”… All these words that are supposed to make you feel better. But all you want to say is, “I don’t want to hear it anymore! You have NO IDEA what we are going through right now!” (Mom, Dad, Sis, friends, I love you!). You simply nod and answer “I know”. Don't feel obligated to share every minute detail with everyone in your support system. It gets to be a bit much when you're on your 3rd miscarriage and conversations start repeating themselves over. And over. However, those people mean well, are hurting for you, care and love you. Be grateful and appreciative that you have a them. You will need their support.
You will doubt yourself and sometimes your relationship. You will be angry, resentful, sad, frustrated, scared, and often numb. Don't be ashamed to feel that way. Know that it’s not a sign of weakness and your marriage is not a wreck (okay, maybe just a little). It’s simply a sign that you are a human being. Allow yourself to be vulnerable. It will hurt. Know it, be ready for it and embrace it along with the joy that will come.
Don’t be afraid to burden your partner. That’s why they are with you. Share in the pain as much as you share in the joy. Stay close and connected as much as you can. Lean on each other, love each other, nurture each other. Be good to one another.
Most importantly, never lose sight of why you are doing this.