IVF Positively Scary

I broke today.

Today was roughly 36 hours before I was scheduled to take my blood test to see if I am pregnant after our first round of IVF.

I found out recently that the drug that women are put on following implantation – progesterone of some sort – can delay or prevent a cycle from starting naturally. I had somehow become dependant on the idea that my body would naturally let me know either by my cycle showing up or not if I was pregnant. I’m lucky in that my body has always been reliable that way about giving me bad news.

When I realized the first time I might know that I was not pregnant would be from a nurse calling to tell me the results of blood work, I broke down and did what I said I was not going to do and took a home pregnancy test.

I was absolutely convinced that this was going to be negative. Absolutely.

It was positive.

I know this is the part where I’m supposed to be unbelievably excited, grateful, happy and overjoyed. Instead what I felt was sheer uncontrollable terror.

The problem is after a miscarriage, after a death in the family, after cancer, after celiac (okay not so much celiac) after so much loss it’s hard to believe anything good is going to happen. And, I still can’t bring myself to pin my hopes on this.

We still need the beta test results. I may be pregnant, but it could be a chemical pregnancy and we’ll get to week 7 and there will be no heart beat. The baby could easily die in the first trimester. The baby could still die in the second and third trimester. I know two women personally who had late term still births. And, as I write this one friend’s daughter who is only a couple of weeks old remains hospitalized.

There is a terror in me about loosing again. Wondering why I even tried again if I can’t face losing again. IVF is in some ways a lottery. The odds of success are less than 50% in most cases. We haven’t beaten those odds yet.

Infertility, miscarriage and death have taken away from me the ability to be hopeful and joyful about an early positive on a pregnancy test.

I don’t know when I’ll be able to celebrate this moment. When we get the beta numbers? When we hear the heart beat? When I feel the baby move? When I’ve given birth? After my child graduates? Or, has their own child.

I’ve spent my time on IVF forums and I see the women there excited and supportive of the women who do and do not make it. I feel selfish and parasitical not to be overjoyed at this moment that so many would love to have. But it’s not that simple for those that have lost. I know there are so many women who have gone through this multiple times. I can’t imagine the strength that takes.

I did manage eventually to move past the panic attack with big help from a couple of friends. For the next few week, at least, it’s one day at a time.

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Contemplating IVF

adoption

The journey to adding a child to our family has not been an easy one. Our original plan was adoption. We wanted to adopt a child, or siblings, five years of age or older with special needs. The process quickly got complicated.

The short version is that our adoption process was stalled indefinitely when five minutes into our first visit with the social worker she decided that in order for us to adopt I should sign up for life-long counselling because of a medical history that included a rape that happened 17 years ago. I was shocked, appalled and frustrated. You can read about that here. Not because I have anything against counselling but because of the judgement that this decision made about rape victims’ (1 in 4 women) capacity to be parents. We fought on for some time and tried to get CAS to clarify what type of counselling they would accept (psychiatric, psychologist or counsellor) and to this day we are still waiting for a response to that question. We could have pressed harder, we could have followed up more. But, we didn’t. We got tired and frustrated. We gave up.

The backup plan to adoption was simply – ha! – to have a baby ourselves. My mother had me and my brother later in life, there was no indication of any problems on either side, so we never thought this would be a problem.

Infertility was a subject that was as foreign to us as miscarriage (as discussed earlier).

IVF 242Perhaps another theme of this blog is taboo subjects. Infertility certainly falls into that category. The lack of discussion on infertility baffles me. I have learned more in the past year about the human reproductive systems than I have in my entire life. And, none of it is, difficult for a 14-year-old girl (or boy) to grasp. Why we are not taught these things as part of sex education is beyond me.

The whole infertility subject lies in a black box. Women and couples who are dealing with infertility are relegated to special doctors, clinics, online forums and Dr. Google. Dealing with infertility is scramble to try to find some – any! – reliable, publicly accessible information. Knowledge seems to be firewalled behind medical institutions and, as a patient, you simply cross your fingers and hope that your doctor is up to speed on all the advancements and treatments.

There is also isolation. Suddenly a feeling of being alone. You can’t simply look at another woman or couple to know if they may have had a similar experience and might be able to offer some guidance or advice.

Our journey from infertility diagnosis to contemplating In Vitro Fertilization (IVF) was thankfully a short one. I say this because I now know that many women and couples face a much longer road.

ivf-fertilizedOur first pregnancy was assisted by Clomid and we were successful on the first round. Unfortunately that pregnancy miscarried and the miscarriage follow-up tests showed that I had cancer and a bilateral tubal blockage. This means that both fallopian tubes are closed making it physically impossible for my body to transport an egg through the tube to the uterus to be fertilized.

The silver lining in all of this is that a complete bilateral tubal blockage is one of very few situations where the Government of Ontario will pay for IVF.

Deciding on IVF has been difficult. If the government did not offer coverage for IVF then my answer would be a simple no. This would be based on a financial decision. After blood tests, hormone tests, lab fees, sperme and egg storage and the IVF procedure itself most couples in Ontario are facing somewhere between $15,000 – $20,000 per IVF cycle. And, that’s before the medications. That’s simply not a financial reality for me.

public_funding_ivfHowever, the government does pay for it. I feel like not taking the opportunity is a slap in the face to couples who would give almost anything to be in my position. Not to mention the people who worked very hard to convince the government to cover IVF (in some limited cases, so far). It also falls under the regret the things you do, not the things you do not do category. In a way I’ve won the IVF lottery and walking away from that feels senseless.

One question I’ve been asked a few times is: how will IVF treatments affect the cancer. I have a team of doctors at Mout Sinai and at Princess Margaret. The agreed consensus is that cancer treatments would seriously diminish my chances of successful IVF procedures. While IVF treatments may post a slight risk to cancer, but are not considered serious.

More difficult, and I hate to admit that I am influenced by this, is the social stigma. I have been told by many friends that they would simply never do IVF. In all cases these are women who have never had to make the choice between: do IVF or do not have a child.

Infertility AwarenessHearing these statements is difficult. It’s difficult because I know they are said from a place of caring. I assume the person saying them is trying to comfort and connect with me about this difficult decision. But, I don’t think it’s a statement that anyone who is not themselves faced with the choice can make. I certainly didn’t think about IVF until it became a choice between trying IVF or not having a child. I don’t think anyone comes to IVF without facing that choice. IVF is a measure of last resort and you have no idea what your measure of last resort is until you look it in the face.

It’s also difficult to hear because in many ways I think choosing IVF or any other fertility treatment should have no more social stigma to it than choosing to go off birth control or to not wear a condom.

poster_knocked-up-3Perhaps the most infuriating thing I hear women say is It’s always the ones who aren’t trying who get pregnant. Why, is it more socially acceptable to seemingly get pregnant by ‘accident’ than to make an informed and eyes-wide-open mutual decision to have a child?

These statements reflect a bizzarre social norm where when a woman pursues fertility treatments she is crossing a line and using science to do what her body cannot, and this is bad, taboo and stigmatized. But,  at the same time unplanned and surprise pregnancies are socially acceptable and celebrated to the point that they make up several mainstream blockbuster movies. It all feels very Kafkaesque.

I’m sure there is a feminist thesis in here about our social valuing of women being able to control their reproductive rights. But, I will leave that for another time.

Today, I acknowledge my internal conflict over the offer of funded IVF treatments. I acknowledge the tremendous amount of work that has been done by scientists, doctors, women before me, advocates and policy makers to allow me this choice. I don’t take this choice lightly. I will likely try at least one IVF treatment, because in the end I want to know I used all the options available to me. I am in a place where I can accept they may not work, but cannot accept that I did not try.

My Miscarriage

Miscarriage

I wasn’t planning to write this post until I reached the one year anniversary of my miscarriage in September 2013. However, a friend’s recent experience reminded me that this remains a topic that is not generally discused. And, as a result of this taboo, many women are left feeling alone and like they have failed. It wasn’t until after I had my miscarriage that I found out how common they are and how many women in my life have gone through one (or more).

I hold a personal belief that living a transparent life is something that is good for me. And so, I would like to share my story of miscarriage in the hopes that another woman will not feel as alone when she experiences one.

After hitting some roadblocks in the adoption process my husband and I decided to go the biological route. We were, of course, very happy when we found out we were pregnant. Having a number of friends who already have kids we had a lot of support. We were lucky enough to get taken on with a well known midwife clinic and we had managed to find a number of subsidized daycares that had open wait lists.

week7-facial-featuresI was a bit concerned about the pregnancy from about 6-weeks. I had very few pregnancy symptoms. No sickness, no dizziness, no real weight gain. Everyone told me not to worry and that I was just one of the luck ones. But, I still worried.

I was not entirely a surprise when we went for our 12-week ultrasound and were told that there was no heartbeat and that the gestational sack had calcified.

In hindsight there were some things I wish I had known to self-advocate for. My OBGYN dismissed my concerns when I asked about testing my beta HCG’s after we found out we were pregnant. He told me that if the results were not good there was nothing they could do. I understood then, and now, that they could not have done anything to save the pregnancy. However, in hindsight they could have saved me from a truly brutal miscarriage and prepared me for the likely negative outcome of this pregnancy.

I also wish I had pushed harder for an early ultrasound. Many women are given an ultrasound around 6-8 weeks. This ultrasound is to check gestational size and confirm the presence of a heart beat. Here again, it would not have made it possible to save the pregnancy, but it could have given me a much earlier warning that something had gone wrong with the pregnancy and allowed me more time to make choices.

midwiferyLogoThe midwife discouraged the early ultrasound. The philosophy of most midwife clinics is as few interventions as possible, ultrasound being seen as an intervention. I’m generally a supporter of natural routes. But, I wish I had listened to my intuition that something was wrong. Instead, I felt like the OBGYN and the midwife both treated me as an over anxious patient who needed to be talked off a ledge as opposed to a woman who genuinely had concerns about what was going on with her body.

The medical system left a lot to be desired when it came to handling the miscarriage. I am thankful that the lab where the 12-week ultrasound was preformed called in a doctor right away to give us the news that I had what is called a missed abortion. I am thankful that they didn’t make me wait to see my own health care practitioner to get the results. It was obvious from the technician preforming the ultrasound that something was wrong and the wait would have been torture.

Unfortunately this is where smooth transition of care ended. The lab where I had the ultrasound was not equipped to preform a D&C, a type of surgical abortion, nor are they equipped to prescribe the medication to trigger a chemical abortion. They sent me home with the news that the fetus inside me was dead and that I needed to contact my health care practitioner.

Missed-abortionWhen I contacted my midwife she was unable to help. A midwife clinic is not equipped to handle a missed abortion.

The only option given to me was to set up an appointment for an abortion at a clinic or hospital. I booked the first available appointment, which was the next morning.

At no point in this process did any health care practitioner explain anything about what a miscarriage would be like, warning signs, what to do or signs that something has gone wrong. I think like most women I assumed there would be blood, lots of it, and pain. But I had no guidelines aside from that.

My body began the miscarriage on its own at about 5:00 pm that night. By 10:00 pm I was getting concerned that something was going wrong. By midnight I knew that something was really really wrong. We called an ambulance, and I was rushed into Mount Sinai emergency with a hemorrhage. I was very very lucky that I live in downtown Toronto throwing distance from an ambulance disbatch.

Here are the things I wish I had known before my miscarriage:

  • One in five pregnancies ends in miscarriage.
    And, this does not include miscarriages that go unreported because they happen early in the pregnancy or miscarriages that are unnoticed because they happen before the 4 week mark, or miscarriages that are termed chemical pregnancies because they only last a few days and would be completely unnoticed except for women testing early and frequently.
  • A beta HCG test can’t save your pregnancy, but it could give you the choice to have a chemical miscarriage earlier if you know the pregnancy has failed.
  • An early ultrasound can provide the same options as the beta HCG but later in the pregnancy.
  • There is so much that can go wrong between conception and live birth, and it’s not likely your fault if it does go wrong. It just happens, and it happens often.
  • You are not alone. There are so very many women out there who have gone through this. After my miscarriage I heard from so many friends and relatives of stories about their miscarriage(s).
  • A miscarriage is a loss, and there will be a grieving process.

These are the pragmatic elements of miscarriage. More difficult are the emotional elements. Every woman, man, couple will react differently and will experience grief and loss differently.

I found that the grief over my miscarriage, while much different than the intense soul-ripping grief over losing Sean, was difficult to deal with for different reasons. It is an invisible loss that is not socially acceptable to talk about openly with most people. As a result it was easy to feel isolated and alone, and at the same time to feel a lot of pressure to move through it and move on quickly.

Unexpectedly there was the sense of guilt or shame that would invade my thoughts. The frequency and common place of miscarriage was almost completely unknown to me. Growing up the message being shoved at me and my generation was about birth control and not getting pregnant. The concept that a pregnancy could so easily and will so frequently end in miscarriage was never made known.

In this context I felt very let down by my body. I felt like I had failed to achieve some basic human element. That I was somehow defective or incomplete. Without subscribing to the idea that women exist solely to make babies, my inability to carry this pregnancy to term felt, on some level, like I had failed as a woman.

pregnancy and infant loss by Shana Smith

Following the grief and guilt was the fear. Fear that there will never be another opportunity, fear that another pregnancy will mean another miscarriage, fear that the future I thought would be so simple is beyond my reach.

A particularly difficult element for me to deal were the social elements. Well intentioned yet insensitive comments made by friends and family who knew and did not know about the miscarriage, but had not had one themselves.

I am very thankful to have amazing people in my life. I was able to reach out to friends and find support that I didn’t know existed. Women who had been through miscarriage and fertility issues freely and generously shared their experiences to make me feel less lonely, less guilty and less fearful. This was a tremendous help.

Every person is going to work through this proces in their own way, in their own time. For me, perhaps it is the perspective of losing Sean, or of other challenges life has thrown me in the past year. The pain of the miscarriage subsided relatively quickly. The fear is there, but does not rule me. Life will be what it will be and there will be nothing I can do to change that. In the end I am like millions of other women who face the challenges of miscarriage and fertility problems as part of the course of my complex life.