IVF: ‘I had the dread feeling that I was part of some greater experiment’

In this extract from her book Avalanche, a love story, Australian author Julia Leigh unflinchingly explores her desire for a baby and the deeply personal pain of her IVF journey

The straws of sperm were shipped from one clinic to another. One precious straw was tested for the sperms motility and possible deformations. Under the microscope, everything was swimming. When it was already too late, I was ready to go.

After consulting with the doctor, I chose to proceed with an IUI, intrauterine insemination, at a cost of $2,040, of which about $670 would be reimbursed by Medicare. I would do it with a nudge of Gonal-f, 75 IU, to boost my chances. On Day 9 the clinic would start monitoring me for my LH surge.

I also had an ultrasound. It was similar to using a turkey baster at home (although I had heard the best way wasnt a turkey baster but a plastic syringe acquired at any local pharmacy). Why did I involve the clinic, why not try at home? Well, I wanted the donors sperm to have cleared the HIV risk, and more than that I wasnt sure he would have been comfortable making home deliveries.

And why not go straight to IVF? My thinking was that my eggs had never had a chance; the problem had been my husbands lack of sperm. I hoped that if my egg was exposed to healthy sperm, then I wouldnt need to undertake the more invasive, and expensive, IVF.

On the appointed day of ovulation, I arrived at the facility. A nurse there was no doctor involved tried to insert a fine plastic tube into my cervix but after a good 10 minutes of prodding, failing, she gave up, apologised and left the room to find another nurse. Alone, alone.

The second nurse had better luck. The thawed sperm which had also been rinsed and concentrated was injected directly into my uterus. It was uncomfortable, like having a bad period cramp. I asked if I could keep lying down for 15 minutes. Quietly excited, I tried to visualise conception, the sperm and the egg.

I placed my hands on my belly and sent loving energy to the womb. My doctor had said I could stand on my head and meditate if I wanted but that kind of thing wouldnt make any difference. I paid no heed. After I left, in a laneway off the main road, I found a paperbark tree and peeled away some bark, placed it under my T-shirt, gently rubbed my skin in a circular motion. Absurd but who cares. It was soothing. I believe in ceremony. Anything to counter the unnatural situation.

My friend in New York paid a surrogate. She lives in a beautiful place, interstate, so much nature. The whole thing felt really natural. Nature. Natural. She continued to repeat the word natural like a nervous tic or mantra.

Avalanche, a love story, by Julia Leigh. Photograph: Penguin Random House

The day after the procedure, I called my sister in an embarrassed small panic. Id absent-mindedly eaten some sushi, which was a no-no according to one of the books Id read, What to Eat When Youre Expecting. Oh my god, youre fine, she said. You can snort heroin for breakfast at this stage and youll be fine. Dont be insane. Its not going to be like this the whole time, is it?

Good morning, darling. Every day I greeted my belly as if an embryo had implanted. Disregarding the odds of success, I directed a loving monologue to what I hoped existed. Id long harboured a platonic crush on my donor, considering him a trusted battle-worn compadre, and I believed the child of our friendship was also meant to be. (Did I still carry grief for the lost our child? Yes, of course I did.)

During that first two-week wait, I had a heightened awareness of my whole body. Rarely did I ever stop to consider how my body was functioning, what my cells were doing. Typically I completely ignored the subtle movements that go on all the time: the inflating, deflating lung; the inch of chyme through the intestine; the tremors of the liver and the kidneys. Not that I actually felt these things, but I pictured them, sensed them. What is that way of knowing? Out on the street I noticed that all the babies, toddlers and pregnant women had cloned themselves so now they were everywhere. I smiled at young mothers. I was soft and optimistic, the holder of a wonderful secret. Its easy to do anything once.

Blood. Bloody hell. Hopes raised, hopes dashed. But I wasnt devastated: no need to take a fall straight out of the blocks. My mother was right when she said: It would have been an absolute miracle. I opted to immediately do a second IUI, again supported with nightly injections of Gonal-f.

It was impossible to gauge the quality of my eggs with only one try. I was monitored regularly but not daily and when the nurse called me with my scheduled time for the procedure I queried if the time wasnt too late, if it were possible the LH surge could have begun on the day before when I wasnt tested, if too many hours could have passed between an undetected surge and the procedure. She referred me to the doctor. He said: Ive seen the numbers a thousand times. This is how we do it. You have to trust me. I asked him to quickly explain how the time-window worked. If you dont trust me, he replied, we can cancel.

The second IUI failed. As a next step Dr Rogers recommended I use my frozen eggs and also do a fresh cycle at the same time. I took that to mean Id do a new cycle, collect a new batch of fresh eggs, inseminate them, and at the same time, thaw the frozen eggs, inseminate them too.

Why not just use the frozen?

You get more with both.

Ive already got five frozen so why do I need more?

Up to you.

Is there a difference between fresh and frozen?

There are no second-class children.

I mean, is one more viable than the other?

Not much difference.

Okay, Ill just do frozen.

Whatever you want.

Thats reasonable. Up to you. Pick your own misadventure.

Coffee. At the orientation, the dietary advice I received from the clinic was to moderate my coffee and alcohol intake and take folic acid, 500 mcg [0.5 mg] daily. I asked what was moderate and was told one cup a day would be fine. A million websites and bulletin boards advised no coffee. They also advised countless other things. Stay alkaline. Wear a lead-lined apron on airplanes. Avoid bananas.

I decided to cut out coffee completely. After three months of IVF failure, I reverted back to one cup a day. I trawled the internet and found the study about caffeine … it concluded that five cups a day was to be discouraged. Sometimes I felt guilty when I had my morning coffee: what if this coffee was the one thing between me and pregnancy? Most times I thought if one coffee a day kills my chance, that dear embryodarling wasnt strong enough to last the nine months anyway. I oscillated between guilt and pragmatism, and that movement, that kinetic energy, helped drive the little engine of endurance.

I saw Paul at the pool. Vampire! Monster! I swam as if I were drowning, thrashing the water, wild-armed, wrenching my head from side to side. I moved fast. No chance to ruminate. At the end of each lap, I paused to catch my breath. Exhausted.

The month after the second failed IUI, I readied for a frozen egg cycle at an out of pocket cost of $2,705. Again I was monitored closely so that we could time the transfer of the embryo to be in sync with my natural cycle. The frozen eggs would be thawed and artificially inseminated the day I naturally ovulated. I was told that three out of five eggs had survived the thaw and they had been injected with sperm selected under digital hi-magnification by a scientist, a procedure called intracytoplasmic sperm injection or ICSI.

Actually I always did ICSI the doctors never recommended straight IVF, which is where the sperm fight it out in the Petri dish en route to the egg. ICSI cost an additional $730, which in the scheme of things felt nominal (how quickly the scales transmogrify). Later I read a study that questioned why so many doctors always recommended ICSI, speculating there may be some benefit to a stronger fitter sperm fighting its way to the egg in the Petri dish, just as it did under the auspices of Mother Nature.

Overnight one embryo showed development but it was atypical. It contains three pieces of genetic information. Three pieces of genetic information! The nurse told me that it couldnt be transferred. My sister and I joked about dirty pipettes but in fact my egg had divided abnormally and carried an extra set of chromosomes.

The nurse had further bad news: my remaining two embryos had shown no development. They would be kept another night and checked in the morning to see if there were any changes: I was warned this was unlikely but not impossible. I had been out on a boat that day, up and down, up and down, rolling on the heavy swell, and come evening I had full-blown vertigo. If I dipped my chin an inch to look at a screen, I felt as if I were about to pitch face-first off a cliff.

The next morning, in my vertiginous state, I got the polite, carefully delivered news that there were no signs of improvement. All five embryos were to be discarded. All five gone, tossed away, discarded. For a long moment I was silent and then I quietly asked the lab assistant, You definitely destroy them? It troubled me how invisible everything was: how would I know what they really did with my embryos? Who monitored the checks and balances? Scenarios for horror movies made themselves known. Evil lab assistant sells embryos on baby black market; evil doctor fertilises eggs with own sperm to create own private colony of children; evil research director conducts clandestine experiments to grow babies full-term ex-uterus … As it happened, in all my five subsequent egg collections I had a much better success rate with embryo development, always ending up with something that could be transferred.

I was having trouble sleeping so in the middle of the night I walked down to the playground at the end of my street. All the ghost-children were at play. There were little boys crawling over webs of rope, little girls kicking up their heels on the swings. They sang and squabbled and thrilled at making footprints in the dirt. I told a girl I loved her outfit. Its not an outfit! she said. Its a tiger suit! A black-haired boy sat beside me and whispered in my ear, Change doctors.

I went back to the same clinic website and found a new doctor, to be known as Dr Nell. My GP wrote a referral. No one at the clinic asked any awkward questions as to why I was switching. On the wall of Dr Nells office was a noticeboard pinned with thank-you cards and baby photos. Her manner was kind and thoughtful.

We discussed my options for the next cycle. Id do a new egg collection. She raised some optional extras that were available as part of the service. The first was a chromosomal test that could be done on the embryo that would cost an additional $3,670. It was especially helpful, she said, for women whod had recurring miscarriages. That test needed to be booked months in advance so I didnt opt for it. For $265 I was also offered assisted hatching, whereby a lab technician would use a laser to thin the outer shell of the embryo, making it easier supposedly for the embryo to hatch out prior to implantation. Older women, I was told, have a harder outer shell. The procedure carried a small risk of penetrating the shell and damaging the embryo.

And on top of that if I wanted I could try embryo glue for $150, this was also supposed to aid implantation. I asked her whether there was evidence for increased chances of success with the assisted hatching and the embryo glue. They apply pigeons, to draw the vapours from the head. She said there was no clear evidence but that if I went ahead I could say Id done all I could. What would you do if you were in my shoes? I asked. She said, Its up to you.

This time I didnt use the glue but I did in subsequent cycles. The cost ended up being $9,675 (plus anaesthetist and day-surgery fees on top). Medicare reimbursed just under $5,200. I had the dread feeling that I was voluntarily participating in cutting edge medicine, that I was a part of some greater experiment, a credulous and desperate older woman, and the only thing that made me think these dread thoughts might be mere anxiety, that actually I was the lucky beneficiary of years of advanced medical research, was the calm and caring manner of my doctor, who on a personal level did seem sincere in her desire to help me fall pregnant, just as she had helped all the women who had sent her those colourful cards pinned to her wall.

Extract from Avalanche by Julia Leigh, published by Hamish Hamilton, $24.99.

Read more: http://www.theguardian.com/society/2016/may/07/ivf-i-had-the-dread-feeling-that-i-was-part-of-some-greater-experiment

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