Our journey to my 8th pregnancy
We’re expecting. 6 months in and it’s going to be a summer baby.
I was supposed to joyfully announce something like this 3 years ago. We were supposed to have a 3 year old by the time Tokyo2020 was being hosted where we live. Though, I suppose anyone who had plans revolving around the Olympics had to scrap them after COVID-19.
Human pregnancy is a long process that takes 40 weeks. For us, it’s going to be 208 weeks until birth, counting from the first gestation. I suffered from a condition known as recurrent pregnancy loss (RPL).
We spent thousands of pounds just on testing and yet we still never found out what was exactly causing the miscarriages. From the limited information we found, Preimplantation Genetic Testing for Aneuploidies (PGT-A) seemed like a possible solution for us.
PGT-A has rapidly spread throughout the world over the past two decades and is currently available in over 30 countries. However in Japan, the Japan Society of Obstetrics and Gynecology (JSOT) only allows it’s usage to a limited number of patients with specific conditions. We didn’t meet the criteria required, one of the reasons being that we were too young!
I was filled with despair.
My request to get tested for RPL was denied by a doctor and I was forced to go through three miscarriages before being able to do testing.
I wasn’t allowed access to a possible treatment for reasons that made no sense set by JSOT.
When I asked for advice to a genetic counsellor his answer was “Just keep trying. We’ll think about it after five miscarriages” !
Actually, despair doesn’t even come CLOSE to cover how I was feeling at the time. I hated the doctors. I hated the genetic counsellors. I hated medicine in this country.
Full of rage, I desperately searched for more information. There had to be a way. Then Bingo. There was a clinic in Kobe that got dismissed from JSOT for performing PGT-A since 2004. A clinic run by a doctor who strongly believed in the freedom for patients to choose PGT-A. I learned that patients from all over Japan went to this clinic, and despite accepting patients with the most refractory cases, they boasted astonishing success rates.
I wanted to fly to Kobe immediately but it was an extremely tough decision to make.
Trying PGT-A requires in vitro fertilization (IVF).
Is it possible to frequently visit the clinic in Kobe, with a full-time job and living in greater Tokyo? It takes four and a half hours to get to the clinic from my house using the bullet train or plane. There was no way I was going to quit my job knowing the whole process may cost over tens of thousands of pounds. Even if I did quit my job to make time for getting treated, what’s going to happen if the whole thing fails in the end? I will have lost my career, my savings, my future with a child, everything. It was the biggest gamble of my life.
I wish it was easy to just give up on having a child.
But I grew up in a happy family of five and I just never pictured a future without children.
We kept trying in distress.
Then I had my fourth miscarriage. I noticed it was starting to take longer to conceive, so we decided to try Intrauterine insemination (IUI).
Our first IUI resulted in a chemical pregnancy (a very early miscarriage). The second IUI again resulted in a chemical pregnancy.
I fell further into despair.
After my third pregnancy, I developed a kind of special ability where I could usually tell if I was pregnant long before using pregnancy tests. But this ability could not tell me how long each pregnancy would last.
After each IUI, my mind was on a constant roller coaster of emotions. I was going insane in a storm of hope and anxiety. I knew it was better to take my mind off it. I knew I should keep calm and don’t expect too much. But I couldn’t help it. There was no way of repressing my feelings. My hopes were ripped apart time and time again.
I couldn’t take it anymore.
So be it. Bring it on IVF. All bets are off. Our last hope relied on Kobe and PGT-A.
We agreed to give ourselves one year.
If that doesn’t work out? We will live happily as a family of two. Travel around the world. Move to an exciting new place which would have been out of reach with a bigger family.
Thus, our life revolving around fertility treatment began.
The hardships of living in infertility limbo was hard to explain to anyone who’s never experienced it. But now thanks to COVID-19, I have a feeling you can now all recognize some of the feelings.
It’s impossible to answer the question “How have you been?” honestly, whilst pretending that none of this IVF thing is happening. You can’t even plan things a couple of months ahead. There’s no way of knowing how long this is going to last. You are in great pain. But there are so many out there in even greater pain and you have to be considerate when expressing your grievances. Things are completely out of your control. Your efforts aren’t going to solve the situation. It’s no one’s fault, but you can’t help feeling impotent. You have to base your strategies on unreliable statistics because that’s all you’ve got. There’s SO much the government can do, yet they are utterly useless. They cannot claim they are tackling birthrate decline, when they make people pay 100% of the infertility treatment fees!
Moreover it feels so lonely. There are so many of us out there but you feel like you’re completely alone.
In Japan, 1 in 5.5 heterosexual couples have difficulty conceiving (1 in 7 couples in the UK).
From the latest statistics, 1 in 16 babies were born using IVF in Japan, but most couples choose to keep it a secret.
The chances of having a miscarriage is about 15% per pregnancy. For older women the risks are higher. If you’re older than 40, the chances are over 50%. But again, hardly anyone talks about it.
Our first egg retrieval was a crushing defeat. This is a tweet from the time.
“I’ve been to the clinic 8 times in the past couple of weeks, spent 4 and a half hours each way to Kobe for half of my appointments, had to live with the humiliation of the gynecological examinations, got sexually molested by an old man on the plane, became worthless at work having to be off so often for reasons I can’t explain, injected myself with a syringe everyday, my organs are a mess, had to be put under sedation for the egg retrieval surgery, and paid 4000 pounds. And what did I achieve? WE ACCOMPLISHED…NOTHING!!”
None of my eggs even made it to try PGT-A. I didn’t see that coming.
During IVF, (1)Eggs are extracted from the ovaries (2)The eggs are fertilized by sperm in a lab (3)Then the embryo is transferred back into the woman’s body. But what the basic text book doesn’t tell you is that there are SO many things that could go wrong in between these steps. And you must overcome every single one of these hurdles to result in a baby.
July. We had our second egg retrieval. A total of 20 eggs extracted and only a single genetically normal egg.
We could have opted for more attempts at egg retrieval so we have more eggs ready to transfer. But I was already sick of all this, so we decided to transfer that one egg.
However, then we got stuck on some other small hurdles… We finally had our egg transferred in December. 8 months had already passed since we began traveling to Kobe.
Our judgment day was Christmas Eve. My Doctor told me I was pregnant for the 8th time. Due to my medical history, we then attended weekly checkups. Everything went surprisingly smooth. Apart from the journey to Kobe and back being an absolute nightmare because of morning sickness.
At 9 weeks I graduated the fertility clinic. I’m still on medication, but I was no longer a patient but just a healthy expectant mother. Which leads to today.
In less than a year, we traveled to-and-from Kobe 24 times. Sometimes I had daily appointments, in which case we stayed overnight in the area, so I haven’t counted the exact number of times I had to visit the clinic.
We spent a grand total of 19,000 pounds on fertility treatment and another 9,000 pounds on travel expenses.
Our travel expenses could have been nearly halved. But my husband decided to be there for me 90% of the time. And I have no regrets about it.
Our infertility journey was like a three-legged race.
On day 1 for his new job, my husband asked his manager to take time off to attend my medical appointments.
Every night he would inject drugs into me because I struggled to press the syringe in from the pain.
He would always be holding my hand when I woke up from the anesthetics.
Traveling to Kobe wasn’t all miserable but felt a bit like a mini-holiday thanks to him.
Whenever I panicked about the bills he’d laugh reassuringly “Think about it Miho. Is there anything more important to use the money for?"
My periods usually began at night. The sign of another failed month. He would always be awake even when I silently creeped back to bed, cuddling me until I stopped crying.
He loved me no less despite the happy bubbly girl he married was lost, and all that was left was a depressed unrecognizable version of her.
When anyone asked “So it’s the egg’s fault?” he’d defend me saying “The current science is very limited about men. It could be me that has the problem”
One day, I plucked up my courage and asked him the question that had been bugging me for months. “Why don’t you remarry someone else? You still have a chance” His answer was crystal clear. “The day I married you, all my dreams came true. Everything on top of that, a better job, children, is just a bonus. I’m living my dream right now”
The genetic counsellor once told me that I am a carrier of a genetic disease that only one in a million people suffer from. Perhaps good things and bad things balance each other, because I found someone who is one in a million.
I tried to make this as short as possible, but that has turned out to be very difficult. I haven’t even written a hundredth of what I wanted to mention but I suspect no one would read it if it dragged on for much longer…
I can assure you, that someone you know well is that 1 in 5.5 who have difficulty conceiving. They may even be in the turmoil right now. But it’s very likely that you won’t ever even hear a hundredth of what they are going through.
I was quite open about my situation to my family and close friends. But I never felt like I could communicate what I’m REALLY going through. It felt like it was too big a burden to share with anyone.
I am able to write this essay right now because I was lucky. There are so many of us out there not just in Japan but all around the globe who are struggling silently. Unable to express their feelings during and after their fight with infertility.
When it comes to infertility and miscarriages, every couple has a different story. I cannot claim that my story is a typical one but I hope that it helps someone feel more familiar with the issue. If you’re someone I know and you’re trying to conceive… I don’t care if we haven’t spoken for years, if you need someone to talk to, I can be that person. I’m sorry that any hugging will have to be virtual for a while.
I tried to avoid using technical terms here but my background in Biology and struggle over the years has turned me into an expert when it comes to fertility treatment in Japan. I would even claim I can give better advice than the average gynecologist (not everyone specializes in fertility issues). I know I sound arrogant but there are too many doctors and clinics you can’t place your bets. Based on studies conducted by the International Committee for Monitoring Assisted Reproductive Technology (ICMART) comparing 60 countries in 2016, Japan has the worst performance record of IVF. Knowledge is power, and if you don’t arm yourself with it you’re bound to end up on the longer routes.
I have a feeling that the wounds I sustained over the past few years are never going to completely heal. Even after a rainbow baby. But during moments when I feel like I’ve managed to help someone going through the familiar struggles, I feel like the scars fade a little. I wouldn’t wish what I went through on ANYONE. But infertility and miscarriages will continue to happen to a certain number of couples trying. In that case, is there anything I can do to make the struggles even the slightest easier? shorter? This essay is one answer to the question I have been asking myself a hundred times. What can I do?
Another thing that I have been taking part of is supporting a petition in Japan to get fertility treatment covered by the national health insurance. Currently, infertility is not seen as a "disease", excluding it from insurances in Japan. We may not be able to cure infertility, but the least we can do is lower the financial hurdles. Please help us! (Sorry there is no English explanation on the website)
*UPDATES (as of October 2020)*
Thank you to those who signed the petition above! (more is always welcome!) We handed in the petition in July and things are REALLY kicking off! As a result, I have been attending meetings with politicians, members of the Ministry of Health, and the media. Fertility treatment is now a huge focus of the new prime minister and you can find out more in the following Japan times article.
Lastly. To those of you reading this who had nothing to do with infertility or miscarriages, thank you. I kept my faith in humanity no matter how many times I was hurt by words of ignorance and prejudice, thanks to empathetic people like you.
To the infertility warriors out there who are still in limbo. I really really wish that your dreams come true soon. My heart aches thinking about you, especially now with COVID-19 making matters even more complicated.
It’s still early with no guarantee that my pregnancy will result in success, but we are most likely to try IVF for our second child again, just like the Obamas did with their two beautiful daughters.
We’re in this together. You’re not alone.