Hi Mum and Dad,
We are moving from Budapest to Vienna today, the weather has finally turned cold, so we've been pretty lucky, it's now down to the single digits and will probably snow lightly today, but the sun is still shining bright. We're at the train station waiting for the 11.10am train, having just missed the earlier train for the day. The Hungarian train system is pretty unexposed to the outside world, and nothing is in English but we are finally on the train, whistling through the lightly white countryside with the little huts and sheaves of wheat, watching the sun glint through the mist and the rolling hills.
Wanted to tell you some not good news, which I didn't tell you about earlier because, well, I didn't want to burden you with hope. After our check ups with Dr N., the prognosis was similar to NUH, DOR (diminished ovarian reserve) and with Z's low morphology and motility, the long wait is self-explanatory. DOR basically means that the quantity of eggs is diminished and the quality of the remaining is poor. In short, at 30, you have the eggs, quality and thus propensity or percentage chance to succeed even with IVF, of a 40 year old. After the first fruitless round and second, perhaps senseless round with NUH, he has made some progress by suggesting that until we actually get to a retrieval and transfer, (he said both rounds at NUH really were never even completed because they were cancelled upon or before retrieval) you cannot really understand what the problems are and hence, prescribing DHEA to help the primordial follicles become antral follicles and thus to raise the quantity, quality and response to IVF medications before attempting another try.
We tried again in mid Nov with a different medical protocol called Elonva; this is lower dosage, slower acting and more targeted for poor responders. If you are young, it helps by saturating the follicles that exist. It has tended to do better with younger respondents than old, because they don't have as many follicles to begin with.
We agreed to try then primarily because the later part of the year in Dec and Jan is hard to schedule with the lab as the embryologists are away and because we ourselves had planned to be away later in the month, so it would be less taxing for us. For all we know, we might get the same problem of poor response to the medications, so I just said, well, if that's so, then we are no worse than where we started and if it's poor into the year-end, at least we're going on holiday.
We got a really encouraging result, 15 follicles, 10 mature eggs, 8 fertilized. We were so happy, after two years of no fertilisation, after all the waiting and frustration and just not knowing if anything had ever fertilized, it was really something to even get this. It felt like when the sun breaks through on a grey winter's day, and you just want to stand there and bask in it, and believe in it. We thought with these numbers, surely our chances were good. My endometrium or womb lining was too thick for this cycle for transfer, but they could be transferred in any following month (frozen embryo transfer or FET is typical and has a higher success rate). That was the good part, that I reacted well to the DHEA (my FSH, which measures how hard your body has to work to produce the follicles, went down from 11+ and at highest 15 to 7.4, which is the normal range for my age and the AMH or egg density improved from 5.9 to 12, again much more normal for my age, which explained the better response to the IVF meds).
That's where the good news ends, unfortunately. There is a natural quality attrition within any cohort of embryos, but after the initial day of good news, we were swiftly told by the lab that all of the embryos showed a rather small size and a compact, dense quality (as opposed to good embryos which are nice and loose). By Day 3, 5 were poor quality and 3 were below average, by Day 5, only 1 could form blastocyst and the others were so poor that they stopped dividing and had to be discarded. How they grade embryos is cell split and fragmentation, on both counts, they were poor (there are five grades — poor, below average, average, above average and good, so that gives you a sense of how poor poor is). The one that grew at least into a blastocyst did not have enough fetal cell matter and could not be transferred; the embryologists' opinion was that even if it had implanted, there would have been an egg sac, but no foetal pole, probably with chromosomal abnormalities.
This is 90% certain to be related to egg quality, given that they pick the best 8 sperm from close to two samples of 19 million each. On one hand, you could say that we are further along; we understand something that we did not before. There is also the knowledge that there are eggs, they can be produced in a way that makes IVF viable and poor quality eggs, other than being a real impediment now, is not something that is a real health concern. Also, DOR is something that has to be carefully managed, not, as in NUH, with a very blunt sword and little care as to whether the patient can respond to the medications. On the other hand, of course, the frightening and terrible reality that this is a disappointing result and the fact that the problem was similar across the cohort, strongly suggests that it will recur. Even within the realm of IVF, I would say to start with 8 embryos and wind up with nothing to transfer is comparatively poor and rare. Dr N. also called to express his disappointment, talked through our diagnosis, which was nice of him and we will see him anyway when we get back.
As to what to do from here, the obvious is that even if you have generally low quality, there are some in the hundreds of eggs that you have remaining that may be better quality. You may succeed naturally, you may succeed with IVF and it may just take time and reiteration. It can be the luck of a random draw, you can tweak the protocol to be more mindful of egg quality but really short of growth hormones or donor eggs, neither of which we are willing to consider, there is nothing conclusive. They can also try to do a Day 3 fresh transfer, before the embryo gets to blastocyst, which may be a way of trying your luck, even while it certainly doesn't add up to necessarily better odds of success. While I'm happy to get a second opinion, as you suggest, and I'm happy to hear their opinion, I have already sought multiple second opinions and I doubt a different doctor or lab will make the difference as opposed to a different medical protocol or you just produce a different batch of eggs in that round.
There was nothing wrong with this medical protocol (as opposed to previous rounds where there were follicles but no eggs, or not even follicles). I felt relaxed, and it wasn't — because of the low dosage and infrequent injections — even that hard compared to previous tries. I only wish this had been the first time, as opposed to the third time around, because probably for a first time, it would have been acceptable, encouraging, or at least less tired and emotional.
Upon reflection, I'm glad we had already planned to go away. The time alone and the distraction of seeing different places, new communities with different perspectives and beautiful scenes, have been good for us. I guess I half suspected that the bad news might start to trickle in, although I hoped so much that it wouldn't. The night before the final call, I tossed and turned in my sleep hoping and praying that somehow, miraculously, the news flow or quality would improve. I would have done terribly, having to force myself to go about normal day life, pretending to care about every movement, office hour and work. It's been far better to take a break and come back ready to be engaged. Z. is also really down and sad; I can tell it matters too to him, though he manages it far better than I do and comforts me that you have to accept the bad with the good and that whether we adopt or just move on, it is the choices and capacity to love that define you and your happiness, not the circumstances. That we are lucky to have problems that bother you, only if you let them bother you.
Still, you know, every time I pause and think about it too much, or stare out the window, or reflect on how much we have tried, how much it hurts, the life choices that I've made or waited on, or the helplessness, the compromises and risks, the tears just roll down my cheeks like they will never end. (On the plus side, I've also discovered this is a sure-fire way to get a guaranteed seat in any train or bus!) I tell myself not to be a baby and that this is nothing compared to the kind of pain of parents who actually lose a child or care daily for a special needs child. Also, that if we adopt, by the time the kid is three, with their own face and name and personality, it will be irritating enough that it truly will be secondary if not superfluous to us, whether they resemble us genetically. And that being here, or anywhere in the world that I want to be to forget or let it go awhile, is a luxury that very few people would be able to afford or exercise.
And all that is true and I know we're lucky; indeed, I know that by the time we're 40, heck, everyone will be infertile anyway and this will hardly be of interest (and hopefully, irrelevant). There are many, countless moments, though, when the incessant baby pictures of babies actually growing or streams of first month invitations, take all my strength and confidence to be different. I've just stopped talking much to people about it because, well, each case is different, many IVF patients will be easier than us and often, it's hard to deal with the noise of their success, or I can't take their hesitating pity when it's the same static state after so long — the truth, I think, is, most people will never care enough to really be there or be educated, but they can make it hard for you to care less, to be balanced or move on.
I've been talking with the Ministry of Health on feedback around how to improve public care and fertility treatment, as well as issues like egg donors, early testing and egg freezing, surrogacy, adoption, many of which are unavailable in Singapore and many of which are unregulated. All of these will become more important as Spore develops and at present, we are behind many other countries even in Asia, with very little early education and testing. After a while, I guess you have to turn from all that is wrong to what you can do about it.
We will be in Vienna for the next two days, going to the 1.5km-long Christmas market, a chocolate market and Mozart's house. Last night, we went to the Budapest opera for 30 Euros, for a performance of Strauss's Salome. It was Z's first opera; unfortunately, the easier-to-understand Nutcracker was fully booked, and the obscure physcosexual representation of John the Baptist's beheading in the court of Emperor Herod did nothing to address his dismay that opera is two long hours of loud and highly pitched caterwauling by fat Europeans. Still, he got at least equal hours of humour out of it after and a free tour.
After that, we are headed back to Paris for two last days; we are staying with an old friend J. from Harvard, who was kind enough to offer to host us. Earlier this week, he brought us out to eat and left hot mint tea with Valronha chocolate on our bedside; he's been a remarkable host. It seems strange that between the beginning and the end of the week, so much can change and the hope of a beautiful lucky year ahead has kind of disintegrated into just more of the same and travelling, a little for the sake of travelling, or doing things for the sake of not just waiting around. I'm trying to enjoy it and Z. and I are enjoying being together; it helps to see new things and together. J. has a lovely decorated apartment two steps from the biggest farmers' market in Paris in the Bastille and we will try to cook with the fresh produce at his place and come back with fresh cheeses, sausage and fruit.
Love always,
