Fertility Focus Teleconference

Haven't taken part in this before, but if anyone is interested, this is a series of teleconferences discussing different aspects surrounding infertility. I hope it helps people:

http://www.fertilityfocustelesummit.com

Nature is too cruel - yet another example

So this morning I hear on the radio that three children have been found dead at a house in a town not too far from me. As the day goes on, the story evolves, and so far we know that the mother has been arrested in relation to their deaths. They were a family of four children, the three youngest (including twin boys) all suffered from 'spinal muscular atrophy', a defect of the SMA1 gene on the 5th chromosome. Her and her husband found out that they were carriers of SMA while she was pregnant with the twins when one of their daughters was diagnosed. I can only imagine what it must have been like to be told that your child has a disorder that is going to kill her, that you and your husband are the cause of it, and that your twin sons are going to face the same fate. From imagining a happy, hectic family life as a family of four children, they were then faced with life as a family with three disabled and dying children. The blow must have been enormous, and (almost) unimaginable. I wonder if they sought or were offered any psycological support?


http://www.dailymail.co.uk/news/article-2610940/Woman-arrested-murder-3-children-New-Malden-south-London.html

Mother's Day, Egg Donation and After Tiller

It seems fitting to post on Mother's Day. When you're not a mother and want to be, the whole day is a bit of a downer. I saw my own mother, but stayed well away from the BILs and SILs, principally because they are so unbearably smug, at least to me. 

Anyway, on Thursday DH & I went to a clinic in London that is one of two clinics setting up an 'egg bank'. While I'm told they are still some way off from actually having a reserve of frozen eggs on tap, they did say that the HFEA's increased payments to potential egg donors means that a lot more women are now willing to donate, and that they no longer have a waiting list. I think we are still keen on trying the UK first, simply because it's easier in terms of travelling and secondly that at least the child has the option of being able to trace their genetic mother when they are 18. However, it does seem extraordinarily expensive. It's going to be much more expensive than PGD. The basic cost, at least with this clinic, is £8,800, and by the sounds of it you can easily end up spending £12/15k on just one cycle, depending on all the 'extras' you may need. Gulp. 

In terms of a match, I would rather have a lady who looks like me as much as possible, but you really are in their hands in terms of who they ultimately pick. In terms of timing, because I am still recovering from TFMR No3 (I can't believe I typed those words) , I need to wait at least two periods before starting anything, which sounds sensible. Given my irregular cycles, this probably means that we are looking at June before starting anything. So that will be half of 2014 gone already, and we will still be no closer to having a family than when we started in 2007. Ho hum. 

On another note, I watched After Tiller the other day. If you haven't heard of it, it's a documentary about the doctors in the US who carry out late pregnancy terminations. Because of the ire that abortion causes in the US, there are only four doctors who carry out the procedure in the whole country. It's very, very odd for me to think that a subject as deeply controversial as a late-term abortion is now part of my own personal experience. Before I was just a spectator - it was a topic that had nothing to do with me but I could pass an opinion - but today it's a topic that effectively defines me. It's a big part of the reason why this blog is anonymous - would it be safe for me to known? It's probably not worth the risk. 

https://itunes.apple.com/us/movie/after-tiller/id796532325

The baby was UBT

I got a call from the genetics team. The analysis of our baby's chromosomes did show that they were unbalanced. I forgot to ask if it was a boy or a girl. I haven't cried at all since the scan, but the past couple of days have been very hard, as if I am wading through syrup. Work has been totally unproductive and it is glaringly noticeable among my colleagues, I'm sure. Yesterday I rang one of London's leading clinics ( read expensive) to enquire about egg donation. I have an appointment next Thursday afternoon. Our options for egg donation seem to be a) go via a clinic and hope you can take part in an egg share b) go via an agency to find an altruistic donor and c) go abroad, typically to Spain or Cyprus. I'm going to try the clinic route first and see what they say. I'd rather, if we go the donor route, stay in the UK, as then any child would be able to trace their genetic mother at the age of 18. Going anywhere else in Europe would mean that the child would never be able to find out about its mother, as donation is totally anonymous. I was reading through the posts on http://anonymousus.org, and basically it's lots of donor children who are extremely hacked off at having coming into the world this way. So I wouldn't go the anonymous route lightly, if at all. Anyway, it's all theory for now - I'll update next on what this clinic say (£180 later).

The inevitable news

Prior to having the scan and CVS, these were my fears: 1) I was frightened that the baby would already have abnormalities that would make a CVS redundant, 2) I was frightened that the baby might already be dead 3) that I wasn't pregnant at all and the whole thing had been my imagination. Apart from absent periods, I haven't had any pregnancy symptoms - nausea etc - although this is just like my previous pregnancies. 

We were both hoping that the baby would look normal for that stage of the pregnancy and that we'd go into the CVS with some hope. 

However, it has not turned out to be. I am currently 11wks and have just returned from the hospital. The baby is covered in hydrops/oedema (it's like a halo around him/her and the nuchal is 6mm. Our poor little baby. We went ahead with the CVS anyway, but knowing full well what the results are going to show. We know there's no hope, and we've already told the hospital of our decision. I should be scheduled in for Tuesday or Wenesday. 

Sorry to give you all this bad news. I rolled the dice, played with the fire and got burnt. 

I promised DH from the outset that I wouldn't be the mess I was after the first two times and I don't think I will be. I'm going to take the whole of next week off work or see if I can work from home for when necessary. Then our next decision is whether to tell our families. Apart from me, DH and you, my online friends, no-one knows about this pg. I may tell my sis and test the water about telling my parents. Who knows, we will take our time deciding. Anyway, that's it for now. 

Yikes!

My next post was meant to be about the start of the post Christmas/New Year diet - I'm jumping on the 5:2 Fast Diet wagon.  Having gained another birthday (37) and an extra stone, I thought I should at least attempt to lose the latter ahead of any fourth attempt at IVF/PGD or egg donation cycle. But then I was waiting for AF to turn up. It's never regular: 33-46 days is normal. But after our last PGD cycle in October, my first period was on December 12 (I remember it clearly since it was the evening of the office party), and then there had been nothing since, taking me up to 46 days, the outer edges for what is normal even for me. So I did a test, and as you can see, we have a BFP. Now I know the chances of this ending in tears is very high. This time, I have gone into it with my eyes open. If it goes wrong again, I will NOT be the mess I was the last time. On my own head be it. I will go to my local early pregnancy unit on Saturday morning and get dated. Then I will ask to get booked in for a CVS at the earliest opportunity, assuming I don't miscarry before then of course. The roller-coaster begins again...

Fertility Show - London 2013

So last weekend we went along to the Fertility Show at London Olympia. There were lots of IVF clinics there, not just from the UK, but also from Spain, Greece and the US. It was a really interesting afternoon, and I'm glad we went along. There were interesting seminars from people/experts working in the industry and it was just a good way to consider our options, even though they are limited. We came back with lots of bumpf - a lot I've chucked, but some I've kept for future reference.

I guess our choices boil down to the following: try PGD a fourth time (£9k/$15k), try egg donation (around the same cost as PGD, possibly more, whether we do it here in the UK or aboard), adoption or do nothing at all. And I guess there is trying naturally again and hoping we beat (my very poor) odds. None of these options is easy. I guess I/we are moving more towards egg donation as the most realistic chance of us having a family. In the UK, egg donation is non-anonymous, meaning the child is entitled to trace their donor when they are old enough. But elsewhere in Europe, such as Spain, it is totally anonymous, and the child will never be able to trace their donor.

How do I feel about all of this? To be honest, I'm quite tired of the whole thing. The past few years have been very gruelling and I'm quite exhausted just thinking about it all. Our three PGDs didn't work for one reason or another, and I don't think it's an unusual experience. In the same vein, there's been a small flurry of articles about the impact of IVF when it doesn't work, which I thought were interesting:

Five million babies have been born thanks to IVF. But few people talk of the many more times the treatment doesn't work, says Lisa Jardine, the departing chair of the Human Fertilisation and Embryology Authority.
http://www.bbc.co.uk/news/magazine-24652639

A recent Magazine article by Lisa Jardine about the frequency with which In Vitro Fertilisation (IVF) fails prompted readers to send in their own experiences.
http://www.bbc.co.uk/news/magazine-24725655

There may be five million IVF success stories, but for many millions more women, the treatments have failed. So why do we never hear from them?
http://www.theguardian.com/society/2013/sep/27/ivf-where-all-grief-going

PGD 3 - Results

Unfortunately both embies were 'unsuitable for transfer', which again means that they were both unbalanced. Trying not to be gutted, but am. Just very, very sad.

Still hanging in there...

The eggs have survived so far and have both fertilised! They get biopsied on Thursday. Fingers & toes crossed...

PGD No3

Today we underwent PGD No3. I've been doing the short protocol for the past two weeks -  a cetrotide injection in the morning and a Gonal f injection in the evening - and it was looking good. I was producing lots of plump follicles; just what was needed for a good harvest of eggs. But it was not to be. Even though I had over 20 follicles that were over 14mm (big enough for there to potentially be an egg inside) , one ovary did not yield any eggs at all and the other yielded only two. The egg collection was this morning. When I came round from the sedation, the embryologist told me they had got two eggs. I thought I had misheard. My heart sank. The consultant later came round and said that sometimes this happens. We are both very discouraged and right now I'm writing this with the iPad in one hand and a much-needed vodka and coke in the other. They'll let us know tomorrow if either of those eggs was good enough to be fertilised. I hate the way your hopes get built up by IVF and then you have to ride the way down as you get knocked back. Will let you know how we get on.

``Where were you when my baby died?!''

Just been having a look at the TFMR boards I read, and one of the posts really resonated with me. The poster has just broken up with her boyfriend after a TFMR, and she had this to say:

''I'm gutted it's pushed us apart. I just feel numb. I'm more devastated at everyone else's reaction. Everyone is rushing around, so worried about how I am. WHERE WERE YOU WHEN MY BABY DIED? Nobody wanted coffee then.''

That's so true. Is losing a baby, regardless of the circumstance, regarded by people as too serious to even 'go there' so they never mention it or do people really think that losing a baby is no big deal? Being of a pessimistic nature, I fear it's the latter.

Podcast on Infertility

An interesting podcast about the cons & pros of living child free from Resolve, a US infertility support association:

http://resolve.streamguys.com/A%20Family%20of%20Two-Exploring%20the%20Option%20of%20Childfree%20Living%202-1.mp3

Babies & pregnant friends

There's a repeated theme in many of the infertility and baby loss forums I read, and that's about the discomfort, if not outright fear, about meeting pregnant friends or their new babies. Or being invited to baby showers; seeing scan pics and baby pics on Facebook.

What can be done about it? Before entering the world of infertility/baby loss, people probably didn't have a problem with this at all. But tumbling into the desperate hole that is infertility, changes how you exprience everyone else's good fortune: if infertility is like breaking a leg, then each time you hear about other people's 'good news' is like getting your leg broken, again and again. It becomes ever-harder to heal as you go back to square one each time.

If you are in this boat, what can you do? If you are at the beginning of this journey, then you are normally still able to psyche yourself up, take a deep breath, and slap that happy face on, faking happiness & interest for the required amount of time. As your journey progresses, this may become harder to achieve. And then you've got to decide if you are going to decline meetings the direct way or the indirect way. The indirect way means 'things come up' at inconvenient times and 'you're terribly sorry, but you just can't make it'. The more direct, honest way, is to simply say that you are having a hard time dealing with your struggle to have a family, and that seeing babies or pregnant women is very upsetting for you, bordering on a phobia. You say that you hope one day she will understand, and that your reaction is sadly very common for people dealing with your situation.

At different points in the past five years I have tried all three approaches, but these days I find it easier to stick with people who don't have kids and are very unlikely (for various reasons) to have them. My life has changed drastically in the years we've been ttc, and my friendship base has totally changed. I guess it's to be expected when the lives of the people you're closest to go in a completely different direction, but it's still hard to live with.

One in 10

http://1in10blog.wordpress.com/

2yr and 4yr anniversaries

These past few days mark the second and fourth anniversaries of my two tfmrs. The first was on May 22 2009 and the second on 28 May 2011. This year I am not feeling as bad as the first anniversary of my second tfmr. After that second tfmr, I pretty much cried at some point every day for the next year and a bit. The first anniversary was an important watershed moment. Since that time I've found out I'm a de novo balanced translocation carrier, had two unsuccessful rounds of ivf/Pgd and am now taking anti-depressants to stop myself spiralling into the worst of my depressive episodes. Myself and DH are currently having joint fertility counselling at the ivf hospital. DH wants to carry on with the ivf, believing we have a good chance of success, while I've had enough, and in a much more negative frame of mind about our chances. Basically I don't think they are good. I realise I'm a pretty glass-half full person anyway, and he's the opposite, but I just don't want more injections, scans, poking and prodding. Plus he refuses to go anywhere near me 'naturally' which I realise is understandable but still upsetting. DH is quite clear that a future without children is not acceptable to him. I am more sanguine about it. I have thought about egg donation and adoption, and I'm not there yet. I don't know what I want. I think what I need is a good, long period of psychological stability and I may slowly revert back to a semblance of my old self. 

A few things you shouldn't say to a childless woman

Pretty good article from Australian publication, The Age, on some of the things people with kids say to those without:

http://www.theage.com.au/comment/a-few-things-you-shouldnt-say-to-a-childless-woman-20130503-2iyj5.html

Impact of Grief

Our circumstances are of course very different, but I can relate to much of what this blogger has to say about how he feels, six months after he lost his wife.

http://lifeasawidower.com/2013/05/01/six-months/

Had Enough

I haven't posted recently because I simply haven't known what to write. I started bleeding a few days before my BFN and thinking that it was all over, I googled furiously, and there were posts saying that people had bled before taking the test and they still got a BFP at the end of it. But wasn't to be for us. TBH, it didn't feel like I was going to get a BFP; i pretty much knew the result before I took the test. I had taken that day off work as i didn't want to be in work whatever the result. DH was at home anyway as he has not been working since June last year.

As soon as i got the BFN, I went straight to my GP and explained that I almost certainly needed to go on anti-depressants as while i was still in the 'numb' stage, I feared that my thoughts would soon go into a death-spiral, and I was anxious to avoid that if at all possible. The death-spiral thoughts have been plaguing me for around two years now, effectively since we got the bad news about baby no2; they manifest themselves by insomnia from 3am-5am, and my thoughts are negative in the extreme. I had hoped that seven months off and therapy would help, and while it did help to some extent, it wasn't enough on its own. The thoughts would normally lift once i got myself out of bed and off to work, but getting out of bed when you are in that mind-set was getting increasingly hard. I should probably have been on anti-ds ever since we got the bad news about baby 2, but I had held out. Now that we got our BFN from PGD2, I knew that would be the only option. They have definitely helped, and my thoughts have been more controlled and not as negative as they could be.

However, having said all that, I did have a breakdown on Saturday morning. DH told me that my SIL2 has had her first baby, so that's three babies on DH's side now from his two brothers. His cousins also have three babies now and I'm sure there are plenty more to come. Anyway, I had a total meltdown. I really don't think I can do this anymore; I've had my fill.

BFN

Unfortunately, I tested today and it was negative. These embryos haven't taken sadly. Numb at the moment.

Leaning In

So, I’ve received my copy of Sheryl Sandberg’s ‘Lean In’, her treatise on women in the workplace. She is phenomenally successful and it’s easy to see why: she is ultra-smart, ultra-hard working, and she’s charming too. Not the ball-breaker stereotype of the successful business woman. In the ‘olden days,’ I would have normally considered myself to be very ambitious. I did well at university and had planned, in my idealistic moments, on being a working mother. But the events of the past few years mean that it’s an achievement just getting out of bed and getting to work. The mental energy it takes just to project the fine sliver of normality needed to function in the workplace is enormous, and most days I’m hanging on by my fingernails.

So I find myself asking: what would she do if she’d been dealt the cards I’ve been dealt? What if her children had been born dead rather than alive? Would she have still have fired off emails in the immediate hours after their birth, and then returned to work within three months, hitting the ground running like nothing had happened? How would someone like her have handled it? Am I on the overly-negative/depressed scale of things, or would someone with a more naturally optimistic outlook have coped better? I really don’t know. I’m just lucky that I still have a job given the recession and the scale of the job cuts all around. I’m lucky that I can still function in my job, in fact it helps to keep me sane and thinking of other things, even if I am a wordless misery while I’m here.  

But work is still only a temporary distraction. What has happened to me dominates - still - most waking thoughts. But now I at least can watch a program like ‘Born to Be Different' without crying. Realistically, all the conditions that these children have been born with would normally be identified in the ultra-sound scan, and many expectant parents would choose not to carry on. That does disturb me. The alternative life I would have led if I’d kept my babies (as long as they hadn’t been stillborn) is what this programme focuses on. That is the truth of the decision I made and I have to live with that.  

But we have had some hope recently. We have now completed our second round of IVF/PGD. And this time, for once, we have some good news. I was put on the ‘short protocol’, which meant a two-week treatment plan rather than a six-week treatment, which was a lot better (though I did have to do double the injections). We managed to get 12 eggs, of which eight fertilized. And two were ‘suitable for transfer’. They went ‘back in’ a few days ago, and then I have to do a pregnancy test next week. Watch this space…

IVF Drug Costs

I've just been looking into prices for IVF medication for our forthcoming PGD attempt (No.2). If I'd thought there would be a standard price for the different drugs (fyi this time I'm doing the short protocol rather than the long protocol for No1) , then I was much mistaken. As you can see below, the price variations aren't small, they are HUGE. It's a Moroccan bazaar out there! (numbers green are the cheapest prices and those in red are the most expensive)

	Gonal F 900 iu pen x 2	Buserelin 5.5 ml vial x 1	Cetrotide injection 0.25mg x 7	Oestradiol valerate (Progynova) 2mg x 84	Ovitrelle injection 250mcg x 1	Delivery	Total
Healthcare at home	£307.20	£18.99	£107.52	£10.07	£8.28	£30.00	£482.06
Asda	£564.00	£14.32	£158.27	£7.30	£31.38	£0.00	£775.27
Central Homecare	£564.00	£16.47	£193.20	£7.60	£38.31	£0.00	£819.58
Fertility2u.com	£595.00	£21.50	£191.73	£21.60	£37.94	£20.00	£887.77
Chemist Direct	£752.00	£35.64	£218.40	£10.08	£39.50	£0.00	£1,055.62
Boots pharmacy - over phone	£634.00	£33.02	£189.91	£9.85	-	£0.00	£866.78
Boots (My local branch)	£846.00	£41.28	£237.39	£8.01	£47.07	£0.00	£1,179.75
Co-op pharmacy online	£676.80	£16.51	£189.92	£8.76	£37.66	£0.00	£929.65
Lloyds pharmacy online	-	£16.51	£189.91	£8.40	-	£0.00	£214.82

Why we get screwed up...

I'm interested in the psychology of pregnancy, given my own disastrous experiences and the really horrible aftermath, that I still live with every day. I read something in a newspaper recently which may encapsulate the journey a woman's head goes through when she finds out when she's expecting a planned a baby. This is a quote from a newspaper from Sarah Storey, who competed in the London Paralympics for the UK team. She and her husband planned to have a baby after the Paralympics, and, lucky girl, she's found she's pregnant only a matter of months after the event. At 13 weeks gone, this is what she had to say:

`` Mrs Storey, 35, told The Mail on Sunday that she had hoped to have a baby soon after London 2012 so that she would be able to compete at the Paralympics in Brazil in 2016. 

‘We were very fortunate that it worked out the way it has and it’ll be three years before the Games in Rio so the baby will be running round and almost ready to go to school by the time it comes round,’ said the cyclist, from Disley, Cheshire.''

I guess she must have found out at around 4-6 wks, and between that time and the official announcement, she's already mentally calculated 1) the age of the baby when the next Paralympics comes round 2) started to imagine that her baby will be running around and 3) will be almost ready to go to school. So basically in a matter of moments/weeks, she's already visualised how much her life will have changed in the years ahead. She already has new plans and hopes for the future because of this baby. And not for a minute can she imagine that it can't come about. The due date is when her baby will be born alive and healthy. By Christmas her baby will be X months old. For Y family event the baby will be Z old. And so on. I think this must be true for almost all women who fall pregnant with a wanted baby. And when it doesn't work out, that's when you're really screwed. Anything that happens to alter that specific future makes those events, when they arrive, terribly sad. For the vast majority of women, they will be lucky in that their imagined futures will come true. But for those who lose their babies, family occasions such as Christmas, become a particularly cruel form of torture.  

Sad again

Sometimes I feel like I'm a human tent post, being repeatedly hammered into the ground. The feeling of relief, boardering on elation that i felt after the end of our IVF treatment has not lasted. What is it this time? DH has just told me that SIL2 is expecting. I knew this would be coming after her m/c earlier this year, so why do I feel such desolation?

It's our turn to spend Christmas with DH's family and already there will be five under thrrees, and SIL2 will be obviously imminent and i wouldnt be surprised if somebody else will be expecting 'happy news' by then too. It's very hard at the best of times dealing with small babies and pg women, so how will i handle next week's Christening, let alone Christmas. I've never dreaded Christmas until we started having our fertility issues and other people started having babies, but the pain involved in having to tolerate it all is heartbreaking. When will I stop feeling like this???

Woman loses all seven of her children

Recently in the UK, there has been debate about IVF babies potentially having 'three parents' - it's a new technique primarily intended to combat problems with mitochondria, part of the female egg structure. The woman mentioned in the link below has lost seven - seven!! - babies/children to this condition. How on earth did she get through it??????? Twice has been more than plenty for me.

http://www.bbc.co.uk/news/magazine-19648992

Livid

I don't know whether to laugh or cry. DH had told me a few days ago that his second brother and my sister in law would be having a christening for baby no2. Today BIL popped the invite through our door (i guess he didnt have the guts to knock and come in). I plucked up the courage to look at the invite. It was a big square picture of the new baby. Then I made the mistake of turning the invite. There, they'd listed the names of the godparents to be. SIL2 has been picked as the godmother!!! At this point I went nuclear with rage. I had been wondering this whole time whether their behaviour these past few years has just been thoughtless or have they been purposefully cruel. I had always wanted to give them the benefit of the doubt. But now I'm pretty sure what camp they are in.

End of a journey

I have to say that my one, overriding feeling since the end of our IVF treatment is one of relief. Relief that for the first time in four/five years we are not: trying to get pg/being pg and worried as hell/getting a devastating diagnosis/living with the aftermath of loss/waiting for IVF/going through IVF. Really, pretty much every moment of every day during these past few years has been dominated by one or more of those things. I feel relief that I've finally reached a point where I can do and plan things that are nice for a change. It feels like I've been let out of a prison. At the moment, I really don't feel like I want to have a baby at any cost. So far, the cost in emotional terms has been too high. Neither am I so hell-bent on having child that I am willing to put myself through IVF cycle after IVF cycle regardless of the financial and psychological cost. I would go as far as to say that I just want to wash my hands of the whole thing. I firmly believe I can still have a perfectly nice life without a child and I don't want to spend another five years being as emotionally crushed as I have been so far. I have longed for freedom, and now I have it.

All four were unbalanced

Just had the confirmation I wanted: all four embryos were unbalanced.

Snake

Looks like I spoke too soon. We've just been kicked down a snake again. Of our four embryos, 'none are suitable for transfer.' I don't know if that's because they were all unbalanced or whether some did not survive the biopsy or whatever, because the guy telling me this news did not have any of that information. So I'm very hacked off. In addition, our 'follow up appointment' is not for another four weeks. Four weeks wait to get more information. It can't change what's happened, but it would be nice to know the details. This whole thing has been another spectacular waste of time... and of hope.

Hope

An odd, unfamiliar feeling has come over me over the past couple of days, especially since yesterday. It's a feeling of lightness, replacing what I realise is a persistent heaviness. I think it's hope. We haven't been kicked down yet another snake yet; we are still hanging on to a rung on the ladder. As of yesterday, we still had four embryos. They'd survived since Saturday and today we'll find out if any of them are free of this unbalanced translocation. I realise that I've actually hated being alive these past three years. I know it is utterly ludicrous compared to people living with chronic or terminal illnesses, but I have actually hated being conscious this whole, entire time. My mind has not been able to stop thinking about our situation. From the moment I wake up to the moment I fall asleep, that's the dominate thought running through my brain. Every other activity offers only temporary distraction. You know it's got to be bad when you actually look forward, as I did on Friday, to the oblivion of a general anaesthetic. For half an hour or so my poor, exhausted brain was completely switched off, getting a much-needed rest from the never-ending battering of its own thoughts.

Embryos

They rang us this morning, and out of our nine eggs, five were mature and of these five, four fertilised. So we have four embryos. Let's hope they last till Monday when they will be tested for this BT.

Eggs collected

The egg collection happened this morning, and they got nine. We'll find out by the end of Tuesday whether we have any embryos suitable to transfer.

Olympics - a welcome distraction

For anyone living under a rock these past few months, yes, the Olympics are here and they've finally started. And for anyone living in London who somehow wasn't aware, every square inch of space seems to have been taken up by bright fushia flags proclaiming 'London 2012', meaning that there is absolutely no escape! 

But the whole thing is proving to be a welcome distraction from this IVF, which was fine at first but now feels like it's getting more tricky. Since I have PCOS, I'm reacting pretty strongly to the Gonal F injections I've been taking since last weekend, and the follicles on my ovaries look like an accident in a popcorn factory... This shot is very similar to what they look like: 

The reaction is so strong, that after four days on 150iu of Gonal F a night, they cut it in half to 75iu for two days, then told me to stop entirely. I've had a blood test and a scan two days in a row now, and at first they thought they might do the egg collection in two days time, but I guess they want to give it a bit more time for for more of the follicles to develop to sufficient size (I have 20+ of varying sizes on each ovary, yikes), so I've just given myself another 112.5iu of Gonal F tonight. At first I felt fine, as I have done since this whole thing started at the end of June, but now I'm getting lower back pain and I'm not being quite so blase about things. 

I'm back again at the hospital tomorrow morning for another blood test to see what should happen next. At this rate, they'll do the `egg collection' (what a lovely thought!) by the end of the week. 

Update

I thought I'd write a few words on what has happened since I last posted:

• my cousin has had her baby, a boy
• SIL1 has had No2, another boy
• SIL2 has had a m/c
• I have started IVF/PGD

I started the 'down regulation' at the beginning of the month, taking a nasal spray twice a day. On Friday I had a scan to see if it had worked, i.e. if my ovaries had been shut down. That showed that they had, and since I have PCOS, I had about 18 folicles on each ovary. So the scan was the green light to start the injections, and last night I had my first injection of 150iu of Gonal f, which will kick start my ovaries into producing eggs. I will inject once a day while still taking the nasal spray; then I will have a blood test on the Wednesday (25th) which will determine what happens next: if they need to alter my dose of Gonal F etc. Because of the PCOS, they will probably need to scan me every other day to make sure I am not overreacting to it, and risking ovarian hyperstimulation syndrome (OHSS). Anyway, that's where I'm at. Hopefully not long to go now until we find out how it's going to go.

Anniversaries

Today marks the first anniversary of the loss of our second baby boy. And six days ago it was the third anniversary of the loss of our first baby boy. I went to the cemetery where our boys' ashes are scattered and spent time at their memorial, bringing with me a couple of all-weather toys to put in front of it, along with the plants my husband had put there. It was a blazing hot, beautiful day, totally incongruous with the significance of the event. It was bizarre, standing there, thinking that about four and half years of our lives, almost all of our married life, has been taken up with heartache, each one arguably worse than the previous one. It's not something we were designed to withstand.

In a way I'm glad we've got to these anniversaries. While I want to start putting it behind me, drawing a line under things, I don't know if such a thing is possible, or at least, I realise I'm not in control of my feelings over any of it. As I've said once before, I'm sick, if not bored, of my existence on Planet Dead Baby. It's a place far, far away from Planet Earth, where the scenery is an unchanging grey, lunar landscape. And it's a planet with a population of one. Me. But perhaps I'm accepting this is where I have to stay for the foreseeable future.

Part of me is very discouraged by the realisation that possibly the only true source of release (but not the solution, by any means), is another baby - live of course. At least you have to spend most of your day focused on this new baby rather than on your dead ones, as I do now. The bloggers at From Under the Weeping Willow, Stillborn StillStanding and Knocked Up, Knocked Down have gone on to have new babies, and for the last two at least, they have stopped feeling the need to blog any more, which I'm enviously interpreting as a reflection of their 'happy ending'.

I was off work for seven months following our last loss, and to be honest, looking back now, the whole period is a blur. I wonder what I did in that time. Some people could manage to circumnavigate the globe several times given that amount of time, but for me, just getting out of bed and getting dressed was an achievement. It took me that long to pick my broken soul up off the floor and be able to put on my office 'face', but going back to work did not mean that everything was now fine. Far from it. Furthermore, it's the sort of experience that sorts out your friends and family into those who genuinely care about you, and those who are the fair-weather type. At least I now know who is who.

Frustration

A bit of an 'argh' moment I'm afraid. We went to our initial PGD consultation on Thursday and first off, they said that due to the waiting list, we aren't likely to start the actual IVF process until August or September. Having waited since early January for the probes to be developed, which they now are, to be told we have to wait another 3 1/2 - 5 months before starting treatment is utterly infuriating. It's it's not like I want to give myself injections and pump myself full of god-knows-what anyhow! Why oh why can't they run the waiting list for ivf concurrently with the probe development? Sorry, this is hardly the worst thing in the world to happen but I do feel like a toddler wanting to throw my toys out of the pram.

It's just that I've been stuck on Planet Dead Baby for so long now, I was really hoping that I was up for parole, but it looks like I'm going to have to try to hold on to what's left of my sanity for a little while longer.

I suppose it comes down to the fact that if we're going to get any of the - perfectly likely - scenarios of there not being any embryos to create/all the embryos are UBT/no normal ones survive to transfer/etc etc, I just want to face that sooner rather than later. And if it's a BFP then all the better, but I JUST WANT TO KNOW!!!! 

In the past four years I've had a m/c and gone on to give birth twice, with both babies being dead (sorry to be graphic) and with other family members rubbing it in by having perfectly healthy, live babies, I've had as much as one human being can take on that front. I guess another few months can't do any harm, but I still feel knocked back. Had sooooo hoped it would be sooner. I just feel I'm getting older and older. Grey hairs are appearing and being plucked out as and when  .

Sorry. Evidently feeling sorry for myself. Rant over.

Approval for one round of IVF/PGD!

It's now been almost 10 months since we lost our last baby. I wanted to write down how I felt after this time. I drafted something but got sidetracked before I pressed 'send'. At the time, I was in a very bad way. But since, the clouds have cleared somewhat. This is down almost entirely to the fact that I got a call from the hospital where we are going to have our IVF/PGD, to be told that our PCT (district health authority), has approved us for funding for one round of the IVF/PGD. I could have dropped to my knees in gratitude. It felt, and still feels, like this is the one piece of positive news that's happened to us in the last four years. I've perked up significantly since. It may not be a light at the end of the tunnel, but it means we are finally moving through this seemingly never-ending tunnel.

Edvard Munch's 'The Scream' could fetch $80 million at auction

Ha! So one of the four versions of Edvard Munch's 'The Scream' is to be sold, and could fetch $80 million at auction, according to press reports. If you read one of my early posts, you'll know that this picture summed up my state of mind when they found abnormalities in our second baby boy. To an extent, the inside of my head is still represented by that picture, though the sheer terror I felt at the time has ebbed and been replaced by other (unhelpful) feelings.

Since I don't think I've got a spare $80 million the last time I looked, I'll have to leave it to the international art world to pick up the tab...

 http://www.telegraph.co.uk/culture/art/art-news/9095836/Edvard-Munchs-The-Scream-to-fetch-80-million-at-auction.html

World Gets Smaller

Amazing, have just found someone who used to work at the same company as me who has a balanced translocation. She had a series of miscarriages before identifying the BT problem. She then went on to have three cycles of IVF with PGD and now she has a baby boy. The world seems to have got a little smaller.

Impact of Baby Loss Poorly Appreciated, Part 2

I've found this blog a very good, and healthy way of venting feelings & emotions that wouldn't otherwise be aired. I thought I'd write about a few of the things that have been bothering me in an effort to exorcise those particular demons. Today's post is about an email I received from a friend, someone I used to work with a few years ago. We live in the same town and got pregnant around the same time, so our babies were due within two weeks of each other and we were looking forward to bringing them up together. But of course, mine died end May 2011, and hers was born 12 weeks later as expected. Here's the email she sent me shortly after he was born.

Hi X,

Not sure if you've been on FB - XXXXX XXXXXX was born last Sunday. It was quite a long and drawn out ordeal getting him out and ended up having an emergency C-section after days of contractions and then forceps but I still couldn't push him out.

Still recovering this end but was all worth it though as he's adorable. Apart from my dark hair hard to tell who he looks like yet as he's changing by the day.

How are you? Has DH gone back to work yet? What are your plans?

No I haven't been on Facebook to see your happy photos of your new, live family. I avoid the dratted thing like the plague. If it's not baby photos ,it's sodding scan pictures.

I think this email clearly highlights how unbelievably unappreciated the impact of having a dead baby is. If my husband had died, do you think this friend, or anyone else for that matter, would be sending me pictures going, 'here's my husband!', 'he took his time proposing, but I got a wedding in the end!' No, of course you wouldn't, because it would be crassly insensitive.

But with babies, especially those who die before term, the same rules evidently do not apply.  I don't think it could have occured to this friend for a minute that I'd be upset to receive news or a photo of her baby. To be honest, when I got that (somehow I knew she would email me and it was an email I was dreading receiving) it would have been quicker and less painful if she'd simply come round and stabbed me in the heart. 

Despite giving birth to one dead baby, let alone your second, it still feels like you are meant to be delighted at everyone else's baby; the concept of grief for your own is just plain bizarre.

Impact of Baby Loss Poorly Appreciated, Part 1

In the same vein as the previous post, I thought I'd list all the other instances where my losses appear to count for nothing. I apologise in advance, as this is typical female-who-can't-let go-brings-stuff-up-ages-after-its-happened.

• We were in a restaurant with my in-laws, my husband, one of my brother in laws and his wife. She was pregnant with what became the Boy Wonder. She and my mother in law COULD NOT stop talking excitedly about the pregnancy. On and on they went. Both of them knew full well that I had lost two pregnancies at that point, but how I might feel about things didn't enter their minds. I couldn't actually concentrate on having a conversation I was so upset. My hands were trembling and I could only just about hold the cutlery. I felt two things 1) that I desperately wanted to vomit in the toilets, 2) like I wanted to walk out into the middle of the street, hoping that there was a suitably large, fast truck coming in my direction. But I sat there being English. When that awful dinner was finally over, I went home and just bawled my eyes out. But what I feel is wrong and I am being unreasonable.
• When my in-laws put pictures up in their house when the Boy Wonder was born. It absolutely broke my heart. Why wasn't it our baby they had pictures of instead? And as time has gone by they have put up pictures of all the other babies that have since been born into the family. I cannot bear to go round there anymore because of those pictures. In fact, when we stayed there for a week in June after our most recent loss (they'd gone on holiday) I took ALL the pictures down. I was SO relieved. :-)
• When Boy Wonder was born and my in-laws started buying all sorts of things for him. My heart kept breaking. Why wasn't it for us? Why did Boy Wonder get to live and be doted on and mine become a pile of ignored and forgotten ashes? Christmas was awful. I had to sit there as present after present was unwrapped for Boy Wonder. I don't think anyone noticed me disappearing to the toilet to cry.
• When it was announced that mother-in-law was now going to babysit him once a week while SIL went back to work. Why why why. I was heartbroken. I wanted to say, please, please don't. Please don't.
• At the wedding of my other brother-in-law, eight weeks after the loss of our third baby. Remember that both my mother-in-law and father-in-law did see this baby. I arrived at the church and saw my mother-in-law and chatted with her. Saint sister-in-law arrived with the Boy Wonder (he was the only baby/child allowed to the wedding) and a welcome party of doting maiden aunts crowded round them. My mother-in-law instantly forgot I was there, turned on her heels crying out 'oh my sweet little boy'. Reader, I am sorry to say, but from that moment I truly hated her.
• Still at the wedding, filing into the church: I overhear sister-in-law point to BW and say 'Look what happened since we got married!!'. I would have quite happily murdered the both of them there and then. But my only weapon was a handbag, which was hardly deadly. So I sat down and tried to keep smiling even though there were tears in my eyes.
• Wedding reception: Out of 10-odd tables, yes, you've guessed it, I'm on the same table with SIL & BW, right in front of them. Sister-in-law CANNOT stop showing him off. He is the only baby allowed at this event, and she is going to milk this to the maximum. I spend as little time possible sat at that table, and when the meal is over, I spend most of the rest of the wedding crying under a tree. I'm not aware of anyone wondering where I am.
• Later at the wedding: I sign the guest book, a record of congratulations for the newly married couple. I flick through the other entries, and come across one signed by my husband's younger cousin and his wife who were also sitting at our table. It's signed from them, their baby daughter and 'peanut'. So she is expecting No2. I twig that everyone in the family must know about this and they are too afraid to tell me. Feel pleased.
• Some weeks later, myself & mother-in-law go out for coffee. We do touch on the subject of my loss and i say I am still seeing the bereavement midwife/counsellor about this (At one stage i was seeing her weekly, I was that bad). She seems genuinely baffled and implies that talking to my friends should be enough. The place we are at is packed with babies and toddlers and I've done my best to zone them out. But she helpfully points out one particularly cute newborn to me. I guess he'd be as old as our baby if he'd been born at term. It's at that point I really realised that she genuinely has no clue as to how much I find that upsetting, or indeed that I would find it upsetting on any level. I should have said there and then that I thought it insensitive, but the moment passes.

Now I wish none of those things had bothered me, but they do. I totally understand if you think I'm being childish and/or bitter, and I'd agree with you. I think the strongest feeling that comes out most from the above is the sheer strength of my jealousy. I wish those events hadn't felt like they were stabbing me in the heart and that I was more grown-up about it, but this isn't how things are panning out.

SIL PG With No2

I couldn't write this before now. But SIL1 (mother of the Boy Wonder) is pregnant with No2. When I was told, my reaction was unprintable, but it's safe to say it involved lots of unladylike expletives & mutilating of voodoo dolls. Why she gets all the luck and we're stuck in this hell I have no idea. It just compounds the hurt.

Article from Independent - impact of miscarriage

Here's a link to a really well-written article on the impact of miscarriage. I can relate so much to her feelings.

http://www.independent.co.uk/life-style/health-and-families/features/miscarriage-the-loneliest-grief-of-all-1516750.html

De Novo

Just found out that I am 'de novo' - in other words, my parents have been tested, and neither of them have a balanced translocation. So I am a one-off. Or as I also put it, I'm like a mutant from X-Men, just without any special powers!

Back to work after 7 months

So, I took the plunge, and now I'm back at work. No phased return, full-time straight away. It's probably a bit unwise, but i'd got to the stage where being at home was doing me more harm than good. In all, it's been a grand total of seven months away. I was lucky, as I was entitled to 10 'keeping in touch' days where I could go into the office without affecting my leave, and it helped build up my confidence, which had largely vanished. And another good thing about being back to work - I'm still very depressed, but that's fine at my workplace at least - come across as happy and they'll think something is wrong with you!

Christmas & New Year - tough to get through

Christmas and New Year have been much harder to get through than I anticipated. My husband and I alternate Christmases with our families, and I was so relieved that this year it's our turn to spend it with my family. There are no babies in our family, while there are now three in my husband's. However, just before Christmas, my mother told me that one of my cousins is pregnant. This came totally out of the blue for me. I don't know why it should be, but it hit me like a ton of bricks. My mother told me as she couldn't bear to tell me herself. She was herself a twin, with a sister who didn't survive the birth. She only found out in her late teens/early 20s when she found some paperwork relating to the fact that she had a sister she knew nothing about. It must have been a massive shock and i think she took it quite badly, unsurprisingly. On Christmas day itself, I said nothing. We didn't talk and I stayed away from her as much as possible. What I was feeling was my very insides twisting with pain. Christmas day was also my birthday. I went to bed feeling utterly wretched. What etiquette is there to negotiate the social interactions of one woman who has given birth to two dead babies and a woman who is happily expecting her first? There is none. I woke up the next morning and sobbed in the bed. I went to bed that night and got up and cried again. It was 2am. I cried again the next day. I guess it didn't help that I overheard my grandmother say how pleased she's going to be a great grandmother at last. That was meant to be my priviledge.

IVF/PGD - process starts

We've finally had our first appointment at the IVF/PGD clinic to talk through the process. I guess they were checking us out as much as we were - suitable candidates to be parents??! I am not looking forward to starting IVF, as I hate needles and the thought of injecting myself with hormones. I was still hoping we'd get there eventually naturally, but so far it hasn't happened, and given what has happened to us, I guess there's not much alternative. They will send us the forms to get everything started, and then they'll start developing the Fluorescent In Situ Hybradisation (FISH) probes they will use to analyse any embryos we manage to get for the unbalanced translocation. This shouldn't take more than three months, and then we will be able to start the treatment.

A week sailing

I did something a little bit brave, and signed myself up for a week-long sailing course - 5 nights on a sailing boat, staying in a different marina every night. Now this would be ideal in the middle of the British Summer but it was end November/beginning of December, and we actually had gale-force winds for the first three days! Plus it was very cold, and there's no heating on a wooden boat, so you're relying on plug-in heaters, which of course aren't on when you first wake up in the morning! Brrr.

From what I've been through, this week was good for two reasons: one, my days were spent thinking about how to survive the next wave/avoid being washed overboard/not getting whacked on the head by the boom, instead of torturing myself about dead babies and about others having seemly perfect pregnancies with perfectly healthy babies at the end (mainly the SIL). And second, I was so exhausted by the end of the day that i went to sleep as soon as my head hit the pillow, even though I was in a minute, cramped space in the bow of the boat. These days I find it very hard to sleep as my head is swimming with unpleasant thoughts, or once I'm asleep, I wake between 3am-5am, again with these poisonous thoughts swimming around, and as a result I'm always very tired.

Anyway, here are some of my favourite photos from that week:



Moving On

This is likely to be my last post in a while. The cemetery rang to let us know that our plaque, to our two boys, was ready. We went to visit it, and it’s perfect. Granite with gold lettering, it shows their names, dates of birth, and how old they were when they were born. The time was right to scatter our second son’s ashes, which we did on the lawn in front of the memorial plaque. Now they are both together, and it feels like we’ve come to the end of this particular chapter in our lives.   

I want to move on now. I know I can’t speed things up, but I also know I don’t want to feel like this my whole life. My major remaining issue, which is really going to ruin my life if it doesn’t resolve soon, is the bitterness, jealousy and, I’m sorry to say this, the utter rage I feel towards family and friends who’ve had babies since we’ve been trying. The way I feel about my two boys, when I’m on my own or with adults, is an aching sadness. But when I’m confronted with the children of friends and family, as I’ve mentioned in the past, then the pain becomes poleaxing.

But I don’t want to always feel this way. I want to be a favourite, spoiling auntie, if only I can get over these feelings. When – if – I get to that point I’ll post again, as it will be interesting to know how long it takes.

Before I sign off, I wanted to make a note of a few things that I hadn’t mentioned in past posts. Firstly, it took me a whole year before I even showed my mother the photos of our first baby. And only after we had counselling for our infertility issues and I couldn’t hold back on my sorrow any longer.  But even then I couldn’t be completely honest with them. It took the arrival of our second baby and to be confronted with organising a funeral service for both of them for me to admit to my parents that we’d named our first son. That communication was terrible, and it’s my fault; I don’t know why it was so difficult, but it was.

Secondly, I’m still not back at work. I had our last baby end May, and it’s now almost November. I will go back to work though, scaling up my hours and days until I’m back full time. I’m not on anti-depressants, anti-anxiety medication or sleeping pills, but I would be if I hadn’t had this time off to digest what has happened to us. And also, I have had a lot of skilled counselling, which has proved invaluable and a big reason why I seem to have preserved a semblance of sanity.  There is a dearth of experienced professional psychological help in this area, but if you can find it, I recommend it to anyone.

                                                     

Time for reflection

I'd been feeling ok until last week, when my husband forwarded me an invite to his cousin's daughters two-year birthday party. I fell into a deep depression again, not helped by another email soon after which was putting a date in the diary for all my husband's family to get together before Christmas, since not everyone will be there on the day. That means three babies/toddlers will be there, and at the moment I see them as the 'ghosts' of the babies we thought we were having but never did. The pain is quite extraordinary. I told my husband that I really didn't want to go and he was ok with that, which relieved me. I hope I change my mind closer to the time, since I do realise I'm dividing him, not least the rest of the family, and it's not like I can make those children 'unexist'.

However, at the weekend, I read about the controversy that Ricky Gervais set off when he referred to 'mongs' - i.e. an insult to those with Down's Syndrome. He had a run-in with a lady called Nicola Clark, who is the mother of two girls with autism, who rightly took issue with his use of language. I'm now very alert to the lives of people with multiple children with disabilities, firstly because frankly, until my experiences, I didn't realise it could happen more than once. I started reading her columns in the Guardian Newspaper, and was drawn to one column where she discusses how she is reluctantly considering asking for one of her daughters, 14, to be taken into care, as neither she nor her husband can take much more of her violence and aggression. I started to read all the comments below her article, many of which are from people also facing a very tough time with their mentally disabled, but physically able, children.

Here, I reproduce one of the comments, which in my view is unbelievably harrowing:

``Let me tell you what we have spent this morning doing so far. We have put up 3 enormous pads, with attractive owls, animals and numbers on them (wipe down tough plastic) on the walls of my son's bedroom because his headbutting has smashed and cracked the plaster right through to the lathes.

So we are constructing what is basically a semi-padded cell.

The endless round of biting, headbutting, kicking, scratching, slapping, punching screaming, and utter destruction of our house has just become normal.

Imprisonment in the house has become normal too, only going out for food. Supermaket trips can be a bit hit and miss with our dear little 'Destructinator'.

He's doubly incontinent, doesn't speak, but at last he's in Special School which is great, because the insanity of life stops for just a few hours a day during the week. School holidays become terrifying, and already I'm getting upset over the 6 week Summer holiday.

Nicola, you are not alone in your family struggle to live with this. People who live daily with this can really understand how it gets to a point where you sadly have to realise you can no longer go on, you are breaking, after finally living at breaking point for years.

I suggest you try residential care as an assessment placement for a few months. See how everyone gets on, so that you can keep your options open.

I'm so sorry that it's come to this for you, but I understand totally how it is, and understand how it's become impossible to carry on.''

I suppose I'm trying to get my heart to accept that our boys, if they'd turned out physically like their father, would have become 6ft4 and 14st of mentally disabled adult male, and that's not a great situation to be in.

 If you have time, do read her article and the comments below - the link is here: 

http://www.guardian.co.uk/commentisfree/2011/mar/31/daughter-care-vulnerable-disabled-people

So, what now?

So now the enemy has a name: an unbalanced chromosomal translocation. So what can be done? We have the following options: First up, `try again' and *hope* nature will be kinder this time and create a baby with either normal or balanced chromosomes. Because they know what the problem is, we can be given a CVS from 11wks, when they can check the chromosomes. However, and I'm sure you're ahead of me on this one, this means that if the test comes back and the chromosomes are unbalanced, we have the choice of letting nature take its course or bringing things to a premature end. Again. Right now, the thought of ending a pregnancy a third time is almost too much to bear. Because this thing can keep happening over and over, I could be faced with taking this decision countless times. Argh!!!

Already, I have to look in the mirror in the morning, and the person who looks back at me is a Woman Who Has Had Two Abortions. Who is she? I never thought in a million years I would say that about myself. I thought that as long as I was careful and in a stable relationship, then surely I would have minimised my chances of having an 'accident' and being faced with a choice I'd rather not make. But envisage what has actually happened to us over the past three years? Never, never, never.

It has to be said that trying again naturally is the hospital's preferred choice if we do want a family. I get the impression that as long as we get a diagnosis before 14 weeks, then I should be pleased because I can have an op and that's the end of it. Personally, the fact that it's an operation rather than labour & delivery gives me no comfort whatsoever. In fact I preferred to give birth to them both. At least we got to see them and to cuddle them. In fact I would go so far as to say I preferred having my last boy later, precisely because he had got to the stage where he had layed down some fat and looked a bit more like a baby. Our first baby was still very young gestationally and had quite delicate, transparent red skin. Anyway, I digress. Back to options. So to recap, we have `try again & test at 11wks'. On a glass half-full view, because it's chromosomal, we have a 50/50 chance of it not happening again, so yes, maybe nature will be kinder and give us an unaffected baby.

Secondly, we can try IVF with so-called pre-implantation genetic diagnosis (PGD). This is where they do standard IVF, but before they pop any embryos back inside you, they take a cell and test it for your particular genetic or chromosomal condition. Only embryos free of your particular genetic or chromosomal condition are put back, and hopefully the embryo will take and turn into a live, healthy baby. Cursory research indicates that while it can and does work, there are no guarantees. There are all the usual problems associated with IVF, and in some cases ALL of the embryos they manage to create are found to be affected, leaving none to transfer. Another factor is the cost. IVF with PGD in the UK costs around £10,000. Yes, 10k. And no, you don't get your money back if it doesn't work. Some people are able to get NHS funding for between one to three cycles, but not everyone is. And in these days of budget cuts, the NHS is slashing spending, right, left and centre, so I'm not positive we'd get funding for this one.

Thirdly, we can adopt.

We can also call it a day and give up, otherwise known as getting on with our lives. Finally. I do favour this one at the moment, I have to say. The past three years have been so exhausting and traumatic that to risk it continuing seems to be bordering on madness. If we go the natural route, I don't want to be faced with making a decision a third time. Just writing the sentence makes me want to vomit. It just seems like a really irresponsible thing to risk.

If we go the IVF route, I keep thinking of the worst-case scenario: don't want to reach 40, or whenever I hit the menopause, and to look on back on my life and realise that 1) we've done nothing but IVF for the past X years 2) we are now broke 3) we are barely talking to each other, 4) and to top it all we are still childless.

Oh well, I better hope that the worst-case scenario doesn't happen, as we've discussed it and we want to go down the IVF route. I'll keep you posted.

Finally, a reason WHY

The chromosome test DID come up with something. It’s a new test, called array CGH, and it turned out that both boys had something called an unbalanced translocation of chromosome 6 & 9. The geneticist rang to let me know. I was SO relieved. We finally had a reason for our three-year nightmare.


So what is an unbalanced translocation? We each have 23 pairs of chromosomes, one set from our mother and one set from our father. In our babies’ cases, bits of chromosomes 6 and 9 had broken off and swapped places. But one boy ended up getting too much of chromosome 6 and not enough of chromosome 9, and the other boy had the opposite problem, too much of chromosome 9 and not enough of chromosome 6. They found the problem first in our second baby, and they then tested tissue they had kept from our first baby’s 2009 post mortem, and this showed the same issue. Because that both boys had the same issue, this meant that either myself or my husband had a balanced translocation of chromosomes 6 and 9.


And we have just found out that it is me.