Donor conception - Ken Daniels

I went to a fantastic workshop earlier this week organised by PROGAR about donor conception. The keynote speaker was Professor Ken Daniels from New Zealand who gave an inspiring talk which covered the whole issue of how we deal with donor conception.  If you've ever had any doubts about whether telling a child they were donor conceived is the right thing to do, just a few minutes listening to Ken Daniels talking would leave you utterly convinced.

He showed how being open about donor conception, and telling children from an early age just stops it being an issue at all, and illustrated how difficult it is when there is a secret at the heart of a family.  Some of the stories he told and clips he played were so moving that they left a tear in my eye, but he passed on his information in such a calm, measured way.

There was a really interesting discussion afterwards with two people who had been conceived with donor gametes - and again, their testimony made it clear that telling is just so important.  It can be hard to know quite how, or what, to tell a child but the earlier you do it, the easier it is as it just becomes something that a child has always known rather than information imparted in a formal way.  If you're worried about how to tell, contact the Donor Conception Network, who run fantastic courses on this very subject where you will also have the opportunity to meet up with other parents

Lesley Brown

I hadn't read about the sad death of Lesley Brown, mother of the first ever IVF baby Louise Brown, earlier this month.  It makes you realise quite how long ago it is since Patrick Steptoe and Robert Edwards carried out the pioneering work that led to Louise's birth in 1978.  IVF is so common now that we may not always appreciate quite how extraordinary it seemed to people at the time, and how much suspicion there was about what Patrick Steptoe and Robert Edwards had achieved.  It wasn't just the media or the general public expressing fears and concerns - the medical establishment was very unsupportive of what had been achieved.

In the coverage in the papers of Lesley's death, I came across a wonderful line in the Daily Mail which explained that - Two years ago it emerged that Louise was actually grown in a jar rather than a test-tube. The idea that Mail readers - and journalists - had for the past 32 years been under the misapprehension that IVF babies were being "grown" in test-tubes was enough to make the mind boggle, and perhaps illustrates the level of misunderstanding that still exists about infertility and IVF today.

It's hard to imagine what it must have been like for Lesley Brown with all the fears and concerns about IVF at the time - and it makes it very clear what a brave woman she was - and how much she wanted Louise.

Meeting at the House of Commons

I've meant to tell you about the meeting of the All Party Parliamentary Group on Infertility for weeks, but am only now finally getting round to it - the picture shows Infertility Network UK Chief Executive Clare Lewis-Jones with the group's Chair, MP for Dartford Gareth Johnson.  Sadly, only one other MP came to join the meeting which was a great shame as it was an opportunity to show support and to help to raise awareness. It was fortunate that so many of those with an interest in fertility who had been invited by the National Infertility Awareness Campaign did turn up - making the meeting feel very well attended.

Clare Lewis-Jones presented the findings of some very interesting research carried out by the National Infertility Awareness Campaign which showed that more than half of all fertility patients had found their GP to be either unhelpful or lacking in knowledge about infertility and treatments when they visited. It must be very difficult for GPs who are expected to be up to date with every health problem and every potential treatment, but one of the problems for fertility patients is the lack of time that they have to give in an appointment when discussing a fertility problem is often difficult and upsetting.

Let's hope that more MPs make time to come along to the next meeting of the All Party Parliamentary Group on Infertility to show their support and to help increase understanding.

What are we called?

I was reading a blog post the other day that referred to people with fertility problems as "infertiles" and it made me think about what we call ourselves.

I prefer to think of myself as having a fertility problem rather than an infertility problem - and I tend to talk about fertility treatment rather than infertility treatment.  I know some people feel that using the word "fertility" rather than "infertility" is just evading the issue - but at the same time, most of us are actually sub-fertile and have some chance of conceiving with treatment, rather than being absolutely infertile, with no chance at all.

I'd only ever come across the use of the word "infertiles" to describe people with fertility problems once before, and I don't like it any more now than I did then. To me,  it's just a horrid word. It's so stark and seems to add to the stigma.  What do you think?

Fertility drugs for sale

I just came across a website where fertility drugs were being bought and sold, apparently from one fertility patient to another.  Judging by the number of posts put up in the last 24 hours, it's a popular business. People were reassuring one another that their drugs had been properly stored and that the dates hadn't expired.  Others were posting pleas for cheap fertility drugs, claiming that they needed them urgently.

I can't stress enough how unsafe this is.  If you're putting yourself through the trauma of fertility treatment - and often the expense too - there's really little point in trying to save a few pounds, or even a few hundred for that matter, by buying someone else's leftover drugs.  When you buy fertility drugs this way, you have no idea who you are buying them from or whether they've really been properly looked after - in fact, you can't even guarantee that they are what they say they are.  It's simply not worth the risk that you could ruin your chances of successful treatment by trying to cut costs this way.

Fertility treatment is hugely expensive - and you can save money on your drugs by shopping around - but just make sure you shop around from reputable suppliers rather than people trying to offload their leftover drugs online.

Another day, another IVF scare story

Have you noticed how every IVF story begins with a couple's "desperate bid" for a child? Perhaps that should be every cliche-ridden story, but it's such a horrible phrase.  I desperately longed for a child, but I wasn't making a "desperate bid" for one by having IVF - I was having the treatment needed to sort out a medical problem.  Do people make "desperate bids" for treatment for any other medical condition I wonder? Anyway, enough...

The newspaper story I've just been reading (which begins with the formulaic "desperate bid")  is about a couple who had ICSI twins delivered prematurely, and it suggests that the problems they experienced must be down to the ICSI - without any consideration of the fact that they were multiples born prematurely when we know that multiple birth is the biggest health risk to IVF babies. 

The article in question went on to catalogue virtually every scare story about IVF just in case you weren't sufficiently freaked out (with a small caveat admitting that actually there was some conflicting evidence). It even suggested that parents of IVF children were constantly worried about what their fertility treatment might have done to their children's health when they were much older, concluding that if you have fertility treatment it will always continue to cause you "unimaginable anxiety" - I interviewed dozens of IVF parents for my book Precious Babies and can assure you that this is simply not true.

Please don't get taken in by scare stories - talk to your fertility specialist and get an expert's insight into the situation. I'm not posting a link to the original story - if you've read it, I hope this reassures you - if you haven't, please don't bother.

What's the worst thing anyone's said to you...

If you haven't seen this video yet, it's worth watching - just to reassure yourself that you're not the only person to have come across some of these "helpful" comments from other people.  One thing we all find is that people who know absolutely nothing about infertility are more than happy to give their advice and suggestions as to what you ought to be doing or ought not to be doing - and there's often an underlying suggestion that somehow it might be your fault, which only serves to exacerbate the stigma that so many of us feel.

It's difficult. People can't always get it right, and they don't always mean to be unkind or hurtful, but most of us have out own lists of the most unhelpful things that people have come up with.  Do you have any particular favourites?  Mine include an agony aunt (surely she ought to know better?) who advised couples with fertility problems that they might want to consider buying a dog instead of continuing to try to have a baby and the person who seemed to need to remind me on a regular basis that she had got pregnant by mistake.

You're bound to recognise one or two from the video - the "maybe it just wasn't meant to happen" type comment is a regular one...  And the lose weight/gain weight/stop thinking about it/be less obsessed with your career comments are popular too...  Maybe we should compile a list...