Thursday, 19 July 2012


Where's the time going?  I was going to be very disciplined about this but eh,  I think a D- score on that one!

Speaking of time, looking back is always something that almost makes me feel the time goes by very quickly but there's no doubt when we're in the middle of something, it goes by very slowly.  Maybe because I was always thinking forward; to the next appointment, the next stage, starting the next part, to bring us our precious baby or babies.  In a way, I was always like this, I'm not very good at living in the moment, it's a skill I'd like to work on because poof, like a flash, time goes by.  I find myself living in a weird timeline; living today in slow motion but fast forwarding to the future.  

In March 2005 we had our first apt with the fertility clinic.  I was lucky, my dad worked at the main hospital and we got to see the specialist fairly quickly.  I didn't know what to expect, except that it was clearly my issue and that hopefully it'd be sorted out fast.  He's a nice man, quirky, professional, but a little dismissive.  'Told us he'd schedule tests but that really there were things we could do to help ourselves, were we having sex properly (?!), enough, at the right times?  And for a moment I doubted myself, was I jumping too fast here?  Maybe all those ovulation tests didn't mean we were still ttc'ing at the right times?  But, like most people trying for a baby, I had this down to a fine art and deep down I still really felt we had real issues.  So, hormones checked (normal), test to check if sperm could make it through or if I had a hostile womb.  Really?  A hostile womb? Now I liked to think I'd a nice, warm, welcoming womb, and I wasn't too keen on its nice personality being questioned!  So, sex in the morning, then into the clinic to see (the beginning of uncomfortable, slightly iccky (technical term, that!) tests.  I remember lying down on the doctor's examination bed, and thinking I was like a car up on bricks, and also feeling the doc was like a miner going in to check the gold collected ('come to think of it did he have a light strapped to his head or am I imagining things?!).  He was working his way around, checking, looking and not saying very much and I really didn't like how this was going, I wasn't hearing anything reassuring, no "ah yes, there they are, all the little swimmers doggy paddling like mad, where they should be at this point".  And as he extracted himself (o that sounds really bad, but I'm pretty sure you know what I mean!), a fairly serious look on his face.  O my God, what if I didn't have a womb?!
What if I had but it'd eaten up the sperm whilst shouting "ha, 'think you can get through here?, no chance".  When I dressed up and sat back down he told us that things weren't as they should be.  He couldn't see any sperm (if I remember correctly) then mentioned that there could be a problem, sometimes the likes of testicular cancer can cause this.  Whoah!!!!  Hang on there.   We came in to see why my body wasn't producing a child and now you're suggesting I may have a potentially dying husband?  What?  Could someone rewind that tape please and change what you've just said?  Within moments the doc was asking dh to drop his trousers there and then and examing for lumps.  Good news, no lumps.  Relief and anti adrenalin rushed through me.  So, good news, no cancer, bad news, no idea what's wrong.  

So, he continued his normal run of tests, next steps sperm count and  chromosome testing, no problem, they said, these rarely come back showing a problem they said, we'll ring you and give you the results which are likely to be normal, they said.  Phone call a few weeks later, please come on in to talk to us.  I remember asking just for the results, we were both working and it was hard to get time off.  But no, they were adamant, we don't give these results over the phone.  Hamm.  That doesn't sound great.  Not liking this very much.  But of course we'll go in.  So, off we go, and when we sat down they told us, very gravely, that the tests weren't normal.  In fact, they were so far from normal that they couldn't actually help us. Pardon?  Dh and I both looked at each other, we looked normal, felt normal.  They'd like us to go for genetic counselling.  Cue complete blonde moment (apologies to blondes, I'm one myself!).  What's that?  'Turns out, when there's a serious genetic defect, a genetic expert should be involved to tell us exactly what it means.  But they could tell us something at the hospital, in fact, 2 things.
The first, we were infertile.  The second, the genetic issue was so severe, they would not be able to perform IVF for us. Oh and the third and equally devastating blow, dh had the genetic issue.

 And that, dear reader, as they say, was actually the biggest, hardest, blow.  Why?  Well in my own mind I'd absolutely known, yes, known, our issue getting pregnant and having children, was mine.  'Had to be.  I was overweight, I was the woman, I'd had several health issues as a child. And, somewhere deep down, beneath all that, the feeling, the knowledge, that I could deal with that.  That if my body let me down, that I could handle it. But my husband?  My lovely, kind, warm husband? He couldn't have anything wrong, and, again, deeper than that, he wouldn't handle it.  Now I don't say that in a condescending way.  He's an educated, strong man.  But somehow, rightly or wrongly, I had fallen into the belief that if it were my issue, I'd be able to process and deal with it.  And it would be sorted.  I wanted it to be mine, not his.  Because, I suppose, there's a total loss of control if it's not your own.  And because, I felt, this would hurt him to the core.  And it was a hurt I knew I wouldn't be able to heal.  And that scared the hell out of me.

We left that clinic and we just walked. Walked, dazed, unable to talk, numb, not really taking anything in but the words "infertile" and "not able to ever have your own children".  We walked around the markets of Moore St, up into Henry St, just walking.  Then, we went back to work!  Seriously?  What were we thinking?  But I suppose we weren't thinking, we were just......being.  Autopilot kicked in.  I rang my sister, she rang me back, I cried in the corridor by the lifts on my floor, I couldn't talk properly, sobs, half sentences, no sense. 'Came home, talked to my best friend on the phone, she cried, I cried, 'still very little sense from my side of the conversation.  'Was due to go out to a psychic party with my twin.  I went.  It was funny, a group of girls sitting, chatting, laughing, going over what the psychic lady told us. And it was a good diversion.  Yet I was there and not there.  'Somewhere above my body I was watching myself and the whole scene.  I went in.  I knew she could see "NO CHILDREN HERE" tattoo's in invisible ink on my forehead.  But, amazingly, (after all the "I see money ahead and I see a funeral") 5 children.  Screech of mental brakes.  Pardon?  Yes, children.  Really, and will it all be natural?  O yes, I don't see medical intervention.  And then I laughed, that hysterical, mind-detached laugh. Well, Mrs Psychic lady, we just got the news today that we're INFERTILE!  I think that may have thrown her a little!!!!  Needless to say, after telling me she could only let me know what the cards said, the session was pretty much over.  I don't think I even kept it to myself, which really would have been the best thing to do, rather than tell a lot of, albeit pleasant, strangers, what happened!

And all the time I just did not know what to do about my husband.  He was hurting beyond belief, in shock, in terrible pain.  His sperm test was showing practically zero motile sperm, due to the crippling chromosome results.  We didn't talk much about it, couldn't.  We'd start, then it'd get too much and we'd stop.

 We agreed to go to the genetic counselling and while I think of counselling in a "let's sort your life out" type of way, (and something I have great respect for),  in this case it wasn't like that. It was the science, and the repercussions that would be dealt with. And that was what we needed. Mr R, (let's just call him that), is a renowned geneticist, a wonderful, funny, professional who calls it as he's sees it and lays all the cards on the table.  He works in a different hospital to the reproductive clinic and we made an appointment to see him.  Ours was an interesting case. (We didn't actually want to be interesting, we wanted to be normal!).  In fact, it was the first of it's kind.  Our chances of becoming pregnant naturally were akin to winning the lottery a hundred times.  But, if we did, then the child would either be: miscarried, or a healthy girl, or a healthy boy but with the same chromosomal issue, or a child who would have brain, heart and multiple organ abnormalities and  deformities.  A child who could never be cared for by us but would need 24/7 intensive medical care.  Bang!  That's it.  This was the reason the clinic couldn't help us, because any higher than a known one in four chance of embryonic dangerous health issues meant ivf was not possible.  And we had a one in two chance.  If I became pregnant naturally (not gonna happen in reality), the amnio test would be done but also a later test, one that would tell us the health of the baby.  And the results of that couldn't be given til 20 weeks.  Then we'd have the choice of trying to continue the pregnancy, or not.   How could we make that choice?  Neither of us even thought about it.  We couldn't have done that.  As Mr R had said, by 20 weeks, I'd have had a bump, would possibly have felt movement, would have carried our baby.  The choice, one which people have to make at times, was not one we could have made. How could we bring a child into the world who would have such devastating birth defects that he or she would never know joy, know love, know possibly anything but suffering. And yet how could we end our child's life?  I am so glad, and feel so blessed that we were given that knowledge before any such decision would have had to have been made.  My heart aches for women, and couples, who learn in pregnancy about such things.  It's a choice that however made, has to be one of the most painful and horrendous things, that could ever happen to anyone.  Mr R, if you ever read this, please know you gave us a great gift that day.  Without this consultant laying everything on the line for us, had we actually conceived naturally, we could have had one of the worst times of our lives.

The only way for us to have a child was ivf with pre genetic diagnosis.  We'd never heard of this but basically, it means that an ivf cycle is completed, eggs harvested, fertilised and then tested for genetic defects. It was not, in 2005, available in Ireland but it was available abroad and Mr R would help us with all the paperwork.  There was an issue that I'll allude to later, but unfortunately without too much detail, because it still has the potential for legal action, that Mr R helped us with also.  He is a man of immense integrity, charity and heart, that even in the face of intervention from the State, he stood by us and championed us.

So now, ironically, instead of trying to have a baby naturally, we were to take all precautions!  Aren't there funny steps on this road?!  We'd never even used a condom before!  And now we were told to make sure and have a supply at the ready! 

But now, what to do?  We couldn't have our own child naturally, and the hospital we attended couldn't help.  They nicely but firmly, quite literally closed the file.  But, they did advise us of another hospital in Dublin that could work with a hospital in Brussels, who use pre genetic diagnosis or pgd as it's commonly called.  While Mr R would be able to help us with the paperwork, he didn't perform reproductive medicine so we still needed a hospital here.   

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