Tests tests more tests

Today was our first appointment with a private immunological fertility consultant in hopes they can help with our recurrent pregnancy loss.

It’s the next step in our investigations. All the other standard RMC investigations have come up clean, bar one: the thromboelastogram. But there are the few that remain.

I was strangely reluctant to take this step because 1) it’s one step closer to reaching the end of our investigative journey and that terrifies me because if everything comes back normal then we’ll be left without a plan of action. And 2) because of the potential to spend my life savings on tests and possible treatment plans when it’s possible they aren’t necessary. Can o’ worms so to speak.

One thing’s for sure: trying to keep up with the jargon is exhausting. Cytokine this, antibody that. Here’s what’s in store for us:

Leukocyte Antibody Detection (male / female)
HLA DQ Alpha Antigens (male / female)
NK Assay Panel
TH1 / TH2 Cytokine Ratio
PAI Polymorphism
High Vaginal Swab
Semen Culture & sensitivity
Mycoplasma, urea plasma (menstrual blood)
Karyotyping x 2
Sperm DNA fragmentation
KIR genotype testing
MTHFR

Now comes the test of deciding which of the several possible routes to take. Be armed and get the full picture or forgo the tests and have faith that the thromboelastogram was really and truly the cause for our first four losses and by treating it things will all work out? But what’s our problem? We wanted answers and that’s what we can get.

The RMC doctors’ argument that had our fifth baby not had a chromosomal abnormality then it is quite likely it would have been carried to term is sticking in our minds. It did get further than all the others. Question is whether that’s enough for our peace of mind right now or whether its better to rule out all other options. This knowing comes with a pretty hefty price tag but the benefit of awareness might simply tip the scales.

It was a boy

Today we learned of the gender of our triploid baby. It was a boy. A little boy we could not save.

I asked the question not really prepared for the answer. But it didn’t matter what the answer was.

Heart = Broken.

1:100

A Triploid baby. Chromosomally abnormal. A baby with an extra set of chromosomes.
1% chance of it ever occuring.
1% chance of it happening again.
100% fatal.

I will try not to dwell on statistics.

These are the results of the karyotyping performed on the tissue collected from my ERPC 4 weeks ago. The doctors say it’s a positive sign. I still don’t get why. I’m told it was a totally random occurrence, that it had nothing to do with our age or the health of our egg/sperm. It’s simply a fluke. A horribly painful fluke. They say that next time things might just work out. That maybe the blood thinning really did work this time, and had there been a healthy fetus, things might have been ok. They’ve given us the all clear to get started again. Just like that. Encouragement. Why don’t I feel encouraged?

How should I feel about this? I really have no idea. I feel a bit numb. I feel a bit relieved. I feel a bit anxious. I feel a bit like I’ve let this baby down even though I could never have controlled this. I was never even expecting to even be told the results because 50% of the time they can’t even test it. I was expecting that we’d never know the reason why. I was too stunned to even ask the gender.

There’s a bit of relief learning why this loss happened but it doesn’t take away the pain it caused or alleviate the concern for another loss in the future. Because there is still that. Although we now know the reason why we lost one child we still will never know why we lost the other four. And it feels especially cruel that not only do we have the challenge of overcoming four unexplained early consecutive losses but that we were doomed with a random fatal consequence for the one that might have squeaked through. What are the chances of this kind of outcome for someone with a history of recurrent losses? They can’t even answer that. It feels like one in a million.

Back on the horse.

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Ugh. The very thought of it makes me feel ill.

Commence Operation Sweet Pea (otherwise known as preconception plan)

It has only been 6 weeks since finding out our baby’s heart stopped and one month since the ERPC. And although I may never get over the last loss (or the others before it) I feel like I need some direction here. Am I ready for this? Probably not. But I need to feel like I’m doing something rather than waiting, healing, grieving.

I don’t really feel like I’ve given myself a proper chance at recovering 100% but I’m hoping this can carry on concurrently. I know what’s got me motivated. It’s that damn ticking clock again. Too loud to ignore, I’ll allow myself to gently ramp it up again, trying to be good to myself in the process.

So today marks Day One of gearing myself up mentally and physically for yet another go at this.

Commence once again the charting, the supplements, the progesterone, the fertility diet, the visualisation tapes, the self abdominal massage, the yoga, the protein shakes, the OPKs, and I guess most importantly, the next round of further investigations. New doctors. New tests.

The next two months will be preparing for hopefully another Opportunity Sweet Pea while we hold off TTC until results of more tests come back. Ditched the old consultants, it’s time for a new perspective. More bloods for anti thyroid antibodies, biopsy for NK cells and the whole gamut of NK cell blood testing. Press here to empty bank account.

But it’s good. It’s a step in the right direction. If I say it out loud I’ll have to stick with it. Right? Ugh.

“Super Fertile”?

Now that I’ve reached the end of my conventional recurrent miscarriage clinic journey and they’ve tested for everything they could, I’ve more or less come up negative for everything that could cause recurrent pregnancy loss. Our case is now “unexplained.” I guess medically speaking it’s a good thing not to have something wrong with me but strange as it sounds I want something to be identified, something to be wrong with me so it can be treated. I need answers.

The next step in my journey has lead me to a specialist Dr. Q who is so different to the other RMC’s. The primary focus is the lining of the womb. She’s told me I’m a textbook example of someone who is “super fertile.” At last, a possibility, something I can hold on to.

Click here to read about the Super Fertility Study

A normal womb will be selective when approached by fertilised embryos and may even take six months or more to choose the best quality one to implant. Apparently my womb isn’t selective enough and allows any old embryo to implant regardless of its quality or viability. A problem with the lining of the womb will cause this to happen.

The proposed treatment protocol is a course of 400mg progesterone daily started from ovulation for either a week or BFP and to continue if BFP. The good news is that the progesterone will increase the thickness of the lining of the womb which will make good embryos really work at implanting and the bad embryos won’t have a chance. The bad news is that the progesterone will make it harder to get pregnant.

But my main concern at this point is could all five of our fertilised embryos really be that poor quality? They won’t know for sure. If it’s a case of constant chromosomal abnormalities then PGD IVF might help our chances.

But Dr. Q tells me that it might not be that simple. She suspects I might have the presence of high natural killer cells in the womb which will make a nasty environment for fertilised embryos. The cells increase blood vessels and oxygenation which isn’t what you want when fertilising an embryo. Who knew? A simple biopsy will be taken after ovulation to check the levels and if they are higher than normal Prednisolone will be prescribed.

Click here to read about the endometrial natural killer cells study and recurrent miscarriage

So it’s the next piece of the puzzle. The next thing to try out. Keen to get cracking.

My medical journey to NOW

The journey to now has been a complicated one.

Having decided we weren’t ready to bring a child into this world until we were somewhat settled into a home that was comfortable and made an income that could provide for another member of our family, we left the trying to conceive part until our mid to late 30s thinking we’d have no problem in the conception department.

I don’t know why I thought this as I’ve been plagued with problems with my reproductive organs all my life, having dealt with endometriosis, fibroids, adhesions, interstitial cystitis, chronic candida, multiple laparoscopies, cone biopsies amongst other problems.

It took over a year to conceive. In the meantime, given our age we were referred to our local hospital’s fertility clinic. They put us straight onto the NHS IVF list. Whilst waiting for our specified IVF cycle we conceived naturally. That initial feeling of naivety and joy at our first pregnancy feels like an eternity ago. I lost the baby at 7 weeks, miscarried naturally.

We waited the suggested cycle to try again and low and behold success. I lost #2 naturally at 6 weeks.

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Two months after that the same thing happened, #3 was lost naturally at 5.5 weeks.

The fertility clinic was keen to start IVF anyway but it just felt wrong that we should be going through such an invasive process when conception didn’t seem to be the problem. The clinic finally agreed and they referred us to a recurrent miscarriage clinic.

More weeks went by waiting for the referral and I found I was pregnant again. #4 was lost at 5 weeks naturally. The RMC tested for their standard blood clotting disorders which came back negative despite a strong family history of thrombophilia and DVT. The clinic told me they thought it was all in my head and that the positive pregnancy tests I was getting after a missed period were actually just false positives. They couldn’t be sure but my AMH was far too low for success and I should consider donor eggs at this point. Discharged. Done.

Back to the fertility clinic. They can work with the low AMH. And we’re back in the queue for IVF. But it still doesn’t make sense to me. Why should I subject my body to such a rigorous protocol if we are able to conceive on our own? It won’t help us keep carry to term.

Another referral to a different RMC, this time St Mary’s. More blood tests, scans, a horrific HSG. A scan found a polyp which later turned out to be a recently implanted embryo. Pregancy #5 managed by the RMC. More blood tests, biweekly scans, consultations. The only thing they found was elevated clot strength determined by a thromboelastogram. Put onto 150mg aspirin and 400mg progesterone. Concurrently doing acupuncture and traditional Chinese medicinal herbs.

We hoped so much for this one to work this time. But it felt wrong from the start. Delayed growth, slow heart beat. But still a heart beat. That was something, right? Assured it was just delayed implantation we were sent home to rest and return a week later. Blood tests spoke volumes: declining estrogen, declining progesterone even though HcG seemed normal. At a routine 10 week scan we were told the baby’s heart stopped beating a few days previously. This was by far the hardest blow. No matter how prepared we were for another possible failure we were stunned when it happened again. I never had any bleeding, any cramping, any symptoms.

We waited to see if I would miscarry naturally but over two weeks went by and nothing happened. We scheduled in the ERPC and that was it. The tissue will be tested to determine if the fetus was chromosonally abnormal. If things come back normal I will likely be discharged from St Mary’s without answers. Terrified I will develop scar tissue from the procedure I didn’t really want done.

Where do we go from here? On advice from some ladies in a similar situation I’ve decided to try seeing Professor Q for a different approach. I’m hoping she can shed some light in what feels like an eternity of misunderstanding and doubt.