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.

Advertisements

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.

20130729-070037.jpg
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.

Recurrent nightmare

The dream I seem to be having over and over these days is one that haunts me in my waking hours. Probably something to do with the freshness of having been told 10 days ago that our baby’s heart was no longer beating and waiting for the impending ERPC this Thursday.

In my dream I can feel our baby is still alive and strong and wriggling comfortably about inside when they force me into anaesthesia and rip out the baby in an ERPC only to realise afterwards that they made a huge mistake and they should have read the scan report properly. They confirm sheepishly that 1) this was my last chance to have a child and 2) I will have a 99% chance of developing Alzheimer’s later in life as a result of my choice to have the ERPC but that not to be discouraged because at least I’ll forget about the need to have my own child. They briskly, sheepishly apologise and ask us to please leave quickly because the waiting room is filling up with happy couples who are waiting for their positive 12 week scan report in order to be discharged to a local hospital for the duration of their joyously uneventful pregnancies.

The strongest feelings I get from this dream? Dread. Regret. The recognition the authorities got it wrong.