Archive for the ‘ART – Assisted Reproductive Technology’ Category

What seems to work best for which poor responders and women over 40?

Thursday, June 3rd, 2010

This is one of those areas where we’d hope the empirical literature would be able to tell us what works for whom and under what conditions. But unfortunately poor responders and women over 40 – and particularly poor responders over 40 – are a relatively small group and rather neglected in the research (JMHO). So, what can we draw on instead?

This isn’t particularly scientific, but if you look at some of the research that’s been conducted over the years and combine this with informal sources such as the Over 40 High FSH Board‘s Timeline post (click here or search for “timeline” to find the latest) and also the high FSH google stats page, and also based on what I observed (IVF successes and failures) over many years on those high FSH boards, here’s what I concluded:

  1. There didn’t seem to be any pattern about whether the flare protocol, the antagonist protocol, or Mini IVF worked best – it’s basically a crap shoot. You just have to try them and see.
  2. The high stim success cases (live births) were generally women under 40 with a lot of antral follicles. The few over 40 exceptions tended to have higher AFCs (>5).
  3. The VAST majority of over 40 IVF success cases were low stim. [Lots of natural conceptions too, but of course there are many more people ttc naturally than with IVF, so it’s hard to infer whether, say, low stim IVF is more or less effective per cycle than ttc naturally – High FSH specialist Dr. Jerome Check thinks IVF gives high FSHers 2.5 times better odds for that cycle cf ttc naturally in your late 30s and early 40s.]
  4. Often on high stims you can get more follicles and sometimes more eggs retrieved, but the number of embryos generally seemed to be the same from either high or low stim (I’m excluding natural and boost protocols from low stim here). In other words, on high stims you often get more empty follies and/or lower fert rates.
  5. Those of us over 40 gals who’ve tried both high and low stim have quite often seen a difference in eyeballable embryo quality – just one example, but check out my high and low stim embie pics and see for yourself

So … based on what I’ve seen, my conclusions for poor responders/high FSHers/low AMHers were:

  • Under 40 and with OK AFC –> give medium-high stims a try first (say, 450-600IU)
  • Over 40 but a pretty decent AFC (say, consistently >5) OR under 40 with a low AFC –> try medium stims first (225-375IU)
  • Over 40 with a low AFC and FSH not through the roof –> try low stim (75-150IU)
  • Really excessively high FSH or a system that goes wacky with drugs –> go natural (BD or IVF) or try a ‘boost’ cycle (start natural, add tiny 75IU boost IF needed based on monitoring)

Not very scientific, but FWIW, that’s what I concluded in the end (after starting medium/high stim at age 40 and eventually listening to my wise board buddies and Jerome Check – and trying low stim).

Please note that this post is directed at couples and women who do NOT at this point want to consider donor eggs, but want to try and get a handle on what might be the best approach to try with their own eggs.

Other posts of potential interest:

What are the main IVF options for poor responders?

Tuesday, June 1st, 2010

In an earlier post I covered what a high FSH/low AMH reading means, what else to ask for in the way of diagnostic investigation, and the basics about whether this is a ‘no hope’ diagnosis or not.

I’ll talk in this post about the main IVF protocol options for women with high FSH/low AMH/DOR and poor responders, but will be back sometime soon with a post about other lower-cost options for those not willing or able to do [more] IVF.

IVF Protocol Options

OK, first let’s talk about protocols. As I mentioned in the post about the main about IVF protocols used in New Zealand, there are basically three possible protocols that are used for poor responders, and 1. The “long protocol” is NOT one of them. The main options for poor responders are:

2. The microdose flare – usual starting protocol for high FSHers and women over 40. It’s less likely to oversuppress poor responders than the long protocol.

Usually but not always starts with a course of BCPs (birth control pills) for about three weeks, then you stop for a couple of days, then start your microdose course of Buserelin (this gives your ovaries a kickstart or ‘flare’), then a day or two later you start your stims (Gonal F injections). As with the long protocol, you stim for about 10 days with scans and blood tests every 2-3 days. When your follies are ready, you are instructed to take a trigger injection and turn up for egg collection about 36 hours later.

3. The antagonist protocol another option for high FSHers, poor responders and older women. Often the first choice protocol for these women, but in NZ it’s typically tried only after the flare protocol has given a weak response because the drugs are cheaper for the flare.

Usually starts with a mild pre-cycle suppression course of estradiol valerate (E2V) from CD21 or 7dpo the previous cycle (you can ttc on your own the previous cycle; this won’t affect a pregnancy); when AF (your period) arrives this is counted as Day 1 and you may be asked to go in for a baseline scan to check that you have no cysts, your antral follicles are ready to go and no big dominant follicles; on CD2 you start stimming, having bloods and scans every 2-3 days. When your lead follicle reaches 14mm, you start Cetrotide (the antagonist that stops you ovulating too soon). When your follies are ready, you are instructed to take a trigger injection and turn up for egg collection about 36 hours later.

4. The Modified Colorado protocol (a.k.a. The “Wellington”)

“As an adjunct to standard IVF or TER for patients with recurrent implantation failure who have had no problems identified following a recurrent implantation failure screen. The Wellington is a treatment that in theory will improve the lining of the uterus to aid implantation of the embryo.”

Stim Options

OK, having discussed with your specialist which protocol to try first – and don’t forget to ask what he/she would try next if the first one works very poorly! – the next question to discuss is what to use to stimulate your ovaries. The usual default is to start with straight Gonal F; if that doesn’t work well, you might raise the possibility of adding something else as well. The options are:

  1. Straight Gonal F (or Puregon) – this is pure FSH
  2. Combination of Gonal F (or Puregon) and Luveris (pure LH)
  3. Combination of clomiphene (Clomid) and Gonal F or Puregon

Dose Options

There are two diametrically opposed schools of thought among specialists when it comes to how to treat poor responders. They are basically:

1. SHOUTING: High FSH means your ovaries do not respond well to IVF stim drugs. It’s like having ovaries that are hard of hearing when it comes to stim drugs’ message, so the best strategy is to shout at them very loudly (i.e. give you a high dose of stims). This might just get you an extra egg or two. IVF is a numbers game, so more eggs improve your odds.

2. Coaxing: Women with high FSH often have eggs that are more fragile, especially if they are ‘older’ as well. High doses of stims simply ‘fry’ those eggs. If you have high FSH/low AMH, you are going to be a poor responder, so it’s a waste of time going after quantity; the best strategy is to go for quality. You can’t actually improve egg quality per se, but you can avoid damaging eggs with high doses of stims by using very low stim protocols. ‘Low stim’ usually means 75-150IU/day. [I’ll write more sometime about the details of some interesting low-stim protocols used overseas.]

Which of these makes more sense for you? Well, the body of research is building but still hasn’t yielded a definitive answer. My own observations over several years (talking to high FSH women and watching who achieved success and who didn’t, plus reading the empirical research) have been that the only high FSH successes on high stim IVF seem to be women under the age of 40. The vast majority of high FSH IVF successes over age 40 seem to be low stim (with a few exceptions). Younger women with high FSH can also do well on low stims. This isn’t scientific research; just my own observations based on a lot of cases I have known about internationally.

Having said that, the New Zealand definition of ‘max stims’ (usually 300IU) is actually more like ‘medium stims’ internationally. In the States, ‘high stim’ generally means 600IU or more, and there are (believe it or not) some total egg-frying protocols that crank it all the way up to 900IU.

My own hunch is that if you are under 40 OR if you have a reasonably decent antral follicle count, consider giving 300IU (or 450IU) a shot. But if that doesn’t get you decent numbers or,  if embryo quality looks poor, consider a switch to low stim for your next try.

If you’re self-pay, there’s a cost advantage to low stims as well.

What is assisted hatching?

Saturday, May 1st, 2010

Assisted hatching is an optional extra procedure used in IVF where a small hole is made in the shell (or ‘zona’) of a Day 3 embryo. This is supposed to help (in some cases) the embryo ‘hatch’ out of its shell and transform itself into a blastocyst (usually on Day 5).

Probably the best site to get a clear understanding of assisted hatching is the one from the Advanced Fertility Center of Chicago, which shows in great detail how the hatching process works, including a pic of an embryo actually in the process of hatching to become a fully hatched blastocyst. Cool!

In New Zealand assisted hatching is not part of the default IVF protocol, so you would need to ask your specialist about it.

My understanding is that public funding won’t cover assisted hatching (I could be wrong about this – please chime in if you know of criteria for eligibility). But, if you were doing a publicly funded cycle and your specialist agreed it might be a good idea, you could presumably pay for it out of pocket (it’s a few hundred dollars).

If you are a self-pay patient, obviously the choice is with you and your specialist, so ask. However (and someone please update me if this is no longer the case), if you have the OK to transfer more than 2 embies, apparently the clinics are not allowed to do AH on more than two. I can’t fathom the reasoning on that (especially for women over 42), but there you go … Minor trivia, but worth knowing in advance (if you’re like me, you hate surprises cropping up during the cycle).

Just to give a broader perspective, in the States, where patients are either paid for by insurance or out of pocket, assisted hatching (AH) seems to be used more widely. The Advanced Fertility Center of Chicago says they do it on all embryos, but they also offer the following useful list of criteria:

Who should be treated with assisted hatching?

The most commonly used indications for assisted hatching with an in vitro fertilization case are:

  • Age factor – Couples having IVF with the female partner’s age over 37
  • Egg quantity and quality factor – Couples in which the female’s day 3 follicle stimulating hormone (FSH) level is elevated
  • Embryo quality factor – Couples having IVF with poor quality embryos (excessive fragmentation or slow rates of cell division)
  • Zona factor – Couples having IVF with embryos that have a thick outer shell (zona pellucida)
  • Previous failures – Couples having IVF that have had one or more previous IVF cycles that failed

In our IVF clinic, we use assisted hatching on just about all cases – because we think it increases the pregnancy and delivery rates.

For the original page, see http://www.advancedfertility.com/hatching.htm

I’m pretty sure that assisted hatching can be used whether you are doing a 3-day or a 5-day transfer, but generally not for 2-day transfers (the embryologists say the embryo is usually too small then and there’s a risk it could break up if the zona is punctured). With a 3-day transfer, they will do this immediately before they put your embies back. With  a blast (5-day) transfer they would presumably do the AH on day 3 before putting the embryos back for their last two days of development. Anyway, these are just a few things to discuss with your specialist.

As for risks, my understanding there is a very very small increased likelihood of conjoined twins if assisted hatching is used. My own specialist told me that, although this was statistically true, the reality was that the increased chances are so miniscule that they don’t really have practical significance.

Who should be treated with assisted hatching?

The most commonly used indications for assisted hatching with an in vitro fertilization case are:

  • Age factor – Couples having IVF with the female partner’s age over 37
  • Egg quantity and quality factor – Couples in which the female’s day 3 follicle stimulating hormone (FSH) level is elevated
  • Embryo quality factor – Couples having IVF with poor quality embryos (excessive fragmentation or slow rates of cell division)
  • Zona factor – Couples having IVF with embryos that have a thick outer shell (zona pellucida)
  • Previous failures – Couples having IVF that have had one or more previous IVF cycles that failed

In our IVF clinic, we use assisted hatching on just about all cases – because we think it increases the pregnancy and delivery rates.

Conflicting expert opinions – how do I know who’s right?

Saturday, April 10th, 2010

So, you finally plucked up the courage to go for a second opinion (see also When and how should I seek a second opinion?) and guess what – now you have two or more well-qualified and plausible experts with compelling arguments telling you to do the exact opposite. Maybe one cites empirical research and another doesn’t; maybe they all cite different research. Maybe one sides with the ‘mainstream’ while the others are mavericks – who’s more credible? Who should you trust?

Here’s a classic example encountered by women in their late 30s and 40s with elevated FSH or low AMH (which means they have diminished ovarian reserve – very few eggs left, on the fast track to early menopause). [This example may not relate to your case specifically, but the reflections about how to deal with it are definitely generalisable.]

Specialist A: Once your Day 2/3 FSH is over [insert cut-off; some say 10, some say 12, some say 15, some say 20] the odds of pregnancy through IVF are so incredibly low that IVF is a waste of time altogether, so we would actually not treat you unless you plan to use donor eggs. Just move on already!

Specialist B: Your FSH is elevated, which means you will be a poor responder to stims (Gonal F, etc) and your odds will be lower than other patients your age. It’s like your ovaries are old and going deaf, so we have to give you a very high dose of stims (i.e. ‘shout’ at your ovaries) to get them to wake up and produce any eggs at all. So, I would recommend we put you on maximum dose stims and see what happens. If that doesn’t work we will try mega mega doses.

Specialist C: Your FSH is elevated, you will be a poor responder, but actually, large doses of stims for women like you will often cause your ovaries to shut down and not respond at all. If they do respond, the dose is so high that you will end up with fried eggs that are unlikely to result in a live birth anyway. No, your ovaries are like an old squeaky violin that has to be coaxed gently into life so that it sings the sweetest tune  it possibly can. I recommend a very low-stim IVF, IUI or TI (timed intercourse) cycle with either very low stims right from the start, or just starting with no stims and letting your own [already elevated] FSH drive follicle growth before adding a ‘tiny boost’ to help things on their way.

Yes, intelligent people do hold different views. The field is still growing and not everything is cut-and-dried (and  actually, never will be). They all have theory and evidence to back their explanations …

Specialist A will cite a ton of empirical research showing the inverse correlation between FSH levels and IVF response (number of eggs produced) and success rates. No argument with that.

Specialist B will cite studies showing that the higher the dose, the more eggs patients produce, and the more eggs you retrieve the higher the success rates. It’s a numbers game.

Specialist C will say ah yes, but what those studies don’t show (but mine do) is that, although you get more eggs from higher stims, in older women and those with high FSH, those eggs are of lower quality, less likely to fertilise, and most importantly, less likely to result in live births.

They are all speaking the truth based on what they have seen and read; they all have evidence and experience to back their claims. So, how do we weigh up conflicting arguments and figure out what makes the most sense for us?

First, let’s talk about the big studies (either randomised experimental trials or retrospective studies) showing that Protocol X works (or, helps) better than protocol Y. These are very important to understand, but what YOU need to consider is not “does it help” on AVERAGE across a large study of all sorts of different women; the real question to have in mind when you read (or, discuss with your dr) such research is WHOM does it help (what age, dx, individual characteristics), and under what conditions? And, will it help ME with my unique constellation of age, treatment history, diagnosis and other characteristics?

There are some aspects of fertility treatment that are so nuanced, unpredictable and idiosyncratic that the reality is NO-ONE is ever going to get “the” answer through large study research. Once you’re past the relatively well-established big picture stuff and trying to individualise protocols based on what you see and what you’ve seen in the past, it’s less about big picture science and hypothesis testing and more about human judgement and pattern recognition.

When we’re in this territory, fertility treatment is less a “science” and more of an “art” or a “craft”. You’re having to trust pattern recognition, judgement, intuition and instincts because the research just isn’t there to the level of detail you’d need to be able to make a call. Also, many of the cutting-edge treatments have no more than a plausible theory and a few success cases; the research needed to fully test them is still in progress or may be years away or may never be done because they help such a small segment of the ttc population – but they may still help (see also New and “untested” treatments). Just about all of my ttc journey was in that murky domain -  I was too specific a mix of age, diagnosis and treatment history for enough large studies to have been conducted to clearly indicate what would work in my case. There were no easy answers – there wasn’t a clear right or wrong because the research out there could only predict what would happen across a large group (that included many women NOT like me), not what would happen in MY case (or cases very similar to mine).

When you’re in instinct and judgement and pattern-recognition territory, the only things you can do are arm yourself with as much knowledge as you can muster, listen to the instincts and judgement of the people who have had more experience with cases specifically like your own, and listen to your own instincts and debate these back and forth with your specialist(s). It’s a crap-shoot, but some people have a knack for this stuff …

Or, the simple version for the example above (please just insert your own dilemma and the answer is likely the same): high stims work for some people; low stims work better for others. Which are you? Well, you won’t know until you try because the studies have been done on a huge range of women, only a fraction of whom are like you in various ways – and none of them are exactly like you. So, research like crazy to try and figure out what seems promising for women and couples most like you, and when it’s still not clear how to choose among various plausible options on your shortlist, go with your gut.

See also: New and “untested” treatments for some thoughts about which new-fangled ideas to consider seriously.

We did IVF but had heaps of empty follicles – help!

Monday, April 5th, 2010

Some of us do IVF, go for those scans and see hardly any follicles after all those injections. Others are relieved to see a healthy crop developing as they go through their cycles. Unfortunately, the number of follicles (or “follies”) doesn’t necessarily equate to the number of eggs collected. And for some women, a huge proportion of the follies are ’empty’. This is sooo frustrating after seeing all those follies on the screen and usually having a fantastic E2 (estrogen level) to match.

There is such a thing as “empty follicle syndrome”, but unfortunately it’s still not all that well understood, and there are various theories …

  1. The most common explanation given by the specialists is that egg maturity and quality are related to how easy they are to get out. Those that are flushed out are lower quality than those that came out easily. ‘Empty’ follicles may not actually be empty; they may just contain very poor quality eggs. OK, there’s obviously a heavy element of truth to this (i.e. it’s a known fact about eggs in general), but the big question, of course, is whether (and how much) it applies in YOUR case. It probably does, to some extent, in just about all cases of empty follicle syndrome. But that’s actually a “There’s nothing we can do about it” diagnosis, and not much use unless you are looking for  a reason to switch to donor eggs or give up altogether. So, the following are some other plausible theories that may or may not apply, but many of which CAN be addressed.
  2. One theory is that you got a dud trigger shot. It’s rare, but it can happen. And it’s unlikely to happen again. But if you want to be absolutely sure, some women use a double trigger shot the next time. This is when you inject not one but TWO vials of Ovidrel (the usual trigger used in NZ), one after the other. Very important: The vials should come from two different batches (check the batch numbers on the packet before signing them out and taking them home – you can’t return injectable drugs for exchange or refund). I’ve not seen any mention that this could have any adverse effect on the egg quality – it’ll cost you some $$ for one more vial of trigger (but this is cheaper than one more IVF cycle and a lot cheaper than the baby once he/she arrives!), but apart from that, it’s a “won’t hurt, might help” measure as far as I can tell. But ask your dr.
  3. Another theory floated a lot is that you may have ovulated just before retrieval, but not so long before that they would have seen collapsed follies. The remedy for this, if true (and it’s very hard to tell) is to schedule your egg collection just a bit earlier – say, 34 to 35 hours after trigger, instead of the usual 36. Reasons to hesitate about doing this might be if several of the eggs that were retrieved were immature – collecting early could exacerbate this problem.
  4. A rather delicate theory to probably NOT raise with your specialist is that the person doing the retrieval wasn’t very skilled. Yes, well, obviously a possibility, but hard to tell as a patient, and there’s no way you’ll get an admission about this one!! If you’ve had several cycles with ’empty’ follies, was it the same person doing the procedure each time?
  5. OK, time to start thinking outside the very simple boxes outlined above. One possibility is that the protocol disagrees with you – gets you follies but most of them are ‘decoys’. Now, you won’t get far on this one if you are under one of NZ’s one-size-fits-all specialists. Obviously, there are some cases where a change in protocol might be risky (e.g. greater risk of overstimulation, OHSS), but personally, I couldn’t bear to go into a new cycle on the exact same protocol as a failed one, so ask lots of questions about alternatives – and see also the post: What are the main IVF protocols used in NZ? The other protocol-related thing to ask about is what stims are being used. In NZ, just about everyone gets put on straight FSH (Gonal F or Puregon), but some specialists will add some LH (e.g. Luveris) into the mix. This seems to help some women with egg quantity or quality or both; others seem to do better on straight FSH.
  6. Some fertility specialists say that if your eggs are overcooked, i.e. if you stim too long before triggering and the egg over-ripens, then the resulting egg will stick to the follicle lining and not come out easily. The same is said about eggs that are ‘undercooked’ (i.e. if you triggered too early and the egg is not yet mature). Although there is some empirical research on the best time to trigger based on follicle size, it’s become quite clear to me (after listening to others’ experiences) that one size does not fit all, and some women need to trigger earlier than the norm, some a bit later.
  7. The other possibility is that maybe your ovaries are of the “less is more” variety, so that if you halve your dose you may get fewer follies but the eggs in them are likely to be (a) really there and (b) better quality. I haven’t seen a lot of research on the latter, but I have talked to a low-stim specialist about this in some depth, and also to several women who swear they get far fewer empty follies when they are on a much lower dose. [And, I suppose my experience was similar numbers but better embryo quality, so I’m a fan of the low-dose option in general.] Internationally there is a fast-growing interest in the reproductive endocrinology (fertility specialists) community about low-stim and natural approaches to IVF.One of the more interesting recent innovations in IVF is in vitro maturation (IVM), where the eggs are removed from the follicles while immature and then matured in the lab. This is nil to near-nil stims technology. Last I heard – in a Nov 2007 National Radio interview with Dr. Simon Kelly (Fertility Associates Auckland) it hadn’t been approved by the ethics people, but it may be by now, or that  may be coming soon. If it sounds interesting, get yourself a consultation with Simon – he did a post-doc fellowship at McGill in Montreal, where IVM was pioneered.

OK, there’s a big laundry list of possibilities here. My own experience grappling with infertility has taught me to push back quite hard if only the “we can’t do anything about it – you just have bad eggs” explanation is being offered. OK, the bad eggs thing may be true (and in my case it certainly was, since I was IVFing over 40 and with high FSH!), but that doesn’t mean there aren’t some other treatable explanations that are also in play. There are quite a few non-drastic options here to tinker with the protocol, and IMHO they are well worth discussing seriously with your dr. If he or she is reluctant, make sure you ask whether your specialist thinks this is likely to be risky or harmful in some way, or whether they think it’s relatively harmless but just unlikely to be effective. If it’s the latter, and if your instincts are telling you it makes sense, then ask to try it.

Can I get travel insurance with an IVF pregnancy?

Wednesday, February 10th, 2010

So you’ve been through (or, are about to go through) the white knuckle ride of IVF cycles and all you desperately need at this point (apart from a 40-week pregnancy) is a nice, relaxing break overseas on some tropical island. But you have a cycle coming up and there’s a slight chance that this one could actually work. Will this cause a problem with travel insurance?

For most “normal” people – you know, the ones who just have sex with their spouses and get pregnant (I know, that’s just sooo last millennium!) – getting pregnant before you leave isn’t a problem and isn’t considered a “pre-existing condition” or anything you could be excluded for. Well, guess what, if you’re unlucky enough to need IVF to conceive, do some very serious shopping around before you buy travel insurance. Here’s why …

Here’s a quick summary of what I’ve been able to find out. Some of it is second hand info though, so check directly with providers before buying. The main purpose here is to alert you to the wide variation in policies so you can ask good questions and choose wisely.

Southern Cross:

  • Pre-pregnancy undergoing IVF or egg donation no cover
  • Once pregnant – no longer considered “treatment for infertility” so they are covered without implications up to 28 weeks.
  • Cover is for unexpected medical complications only. Common symptoms such as breast tenderness, constipation, fatigue, frequent urination, heartburn and nausea (morning sickness) are not covered.

Downunder:

  • Single uncomplicated pregnancy arising from assisted program cover available up to 26 weeks – additional premium required.
  • Multiple pregnancy no cover.

Travel Insurance Direct:

  • up to 26 weeks no complications single pregnancy but only if not result of assisted reproductive programs.

Flight Centre’s ‘Travel Sure’ Policy (via Vero):

  • Brochure says: “We will not under any section pay for…
    13. claims directly or indirectly arising from:
    a) pregnancy… if you are AWARE of the pregnancy prior to the Relevant Time (which means when the policy is issued), AND..
    i) where complications of this pregnancy or any previous pregnancy have occurred prior to this time, OR
    ii) where the conception was medically assisted.
    This exclusion will be waived from the time the appropriate additional amount payable has been received by us IF the cover is separately applied for AND accepted by us in respect of your pregnancy only”.
    The usual clause that travel must be completed by 26 weeks applies.
  • One IVF patient reported, “Flight Centre … rang me back this morning and said that even though fertility treatment is not noted in their wording they would decline any claims on the basis of: at the time you take out the policy “you are not aware of any circumstance which is likely to give rise to a claim”. He said that doing fertility treatment which may result in a pregnancy would be considered a ‘circumstance’. I was so outraged I burst into tears and hung up on them. … He said if I wanted to take out insurance we could always take them to the disputes tribunal in the event of a claim being declined. Charming.”

ASB (via Tower):

  • One IVFer reported that they cover pregnancy as a special benefit (without needing to declare it as a preexisting medical condition), but only up to 20 weeks. However: You are not covered for.. “pregnancy known to exist at the date of inception of this policy AND for which you have been receiving medical treatment or medication…”.

Westpac gold card travel insurance:

  • ‘Pregnancy is considered a pre existing condition. There is no cover for any expenses as a result of your pregnancy except for an unexpected/unforeseen medical complication or emergency that occurs during the period of insurance and when you are no more than 26 weeks pregnant at the time of the unexpected/unforeseen medical complication or emergency occurs.’
  • When asked about whether they would cover a pregnancy that had resulted from fertility treatment, one IVFer said the customer service agent “didn’t exactly say either way, just that they would look at it on a case by case basis.”

Here’s what another IVF patient found out when she did some further digging:

I rang Mondial yesterday (who do the insurance for House of Travel) and spoke to their assessor in the ‘pre-existing medical conditions’ section who said they assess for multiple companies (she didn’t name them) and she said all the companies she was aware of had similar exclusions.

According to their policy, if you are ‘not yet pregnant’ (at the time of taking out your insurance) but are undergoing any fertility treatment now or before your travel, you are not covered for any medical costs or cancellation related to pregnancy.

However, if you are already pregnant at the time of booking your insurance, whether naturally or from fertility treatment (including but not limited to IVF) then they will cover you until 26 weeks with a singleton pregnancy, or 19 weeks with a naturally occurring multiple, but not with multiples arising from fertility treatment.

Her suggestion was to take out normal insurance when you book (making sure it covers you from the date of taking it out rather than the date of travel), and if you get pregnant, then you could cancel that cover and take out a new policy (with a different company probably!)

I have contacted Consumer NZ on this one and they plan to look specifically at this issue the next time they review travel insurance (later in 2010). Stay tuned!

How should we explain ART to our kids?

Sunday, December 6th, 2009

So, you’ve been through the infertility rollercoaster and it finally worked. How on earth do you explain to a child that they were born from IUI, IVF, donor sperm, donor eggs, surrogacy, or some other form of ART (assisted reproductive technology)?

I started thinking about this after reading a friend’s blog post, which I’ll just paste here because I thought it was right on the money (hope you don’t mind, PJ!):

“The impetus for this post was this article – The Stork Didn’t Bring You, But We Had Help from the New York Times. It’s a very nice article discussing the realities of helping children to understand where they’ve come from when any sort of assisted reproductive techniques are utilized. The article is specifically about surrogacy, but is relevant to all forms of assisted reproduction.

I was adopted and my parents did an excellent job of explaining how I came to be their daughter. Here are some important guiding principles:

* Answer questions honestly. Children have questions about where they came from and parents need to answer their questions honestly (as honestly as possible considering the age and understanding of the child). Children will eventually recognize if they have been misled and the hurt feelings can be profound.

* Start when the child is young. Start discussing it when the child is very young – perhaps the age of two or three. This allows the child to always be aware of their story even if they don’t completely understand it. Details can be filled in later. The difficulty in waiting until a child is old enough to understand is that it will come as a surprise and there may be hurt feelings as a result.

* Use a storybook. Using a storybook is a wonderful approach because it is something tangible that a child can treasure. My parents had a sweet storybook that they read to me frequently – it was one of my favorites – about a family who wanted children and couldn’t have one of their own. Well, you know the rest of the story. It made me feel very special because my parents chose me out of all the other babies.

* Emphasize the positive. Any child coming to a family via either adoption or some sort of ART will at times feel a bit strange or different. By emphasizing the positive, parents ensure that their children will always feel special and loved. In my case, my parents emphasized that they chose me out of all the other babies. Any child born via any form of ART is special because of all the difficulties that their parents went through in order to have them.”

We have one child conceived via IUI and twins from IVF. I ordered an Aussie book called The Baby Doctor (about IVF) and have read it to our eldest. She’s 5. The poppets are not even 2 yet, so I am going to leave it until they have the ability to take at least some of this in, maybe by about 2 1/2 or 3. There are some great books out there for the donor sperm and donor egg scenarios, also surrogacy, adoption, etc.

From all I’ve read, and based on the reaction of my own 5-year-old, little kids can get their heads around pretty much anything and there is NO question that they still love their parents to bits. The ONLY serious danger is withholding the information because at some stage later in life they are going to need something like a biological history maybe to look at the risk of something inherited or whatever, it IS going to come out at some stage. And at any age older than little kid stage, it is going to be a “news”, a shock perhaps, maybe even like a betrayal. OMG, I just shudder to think of them finding out in the teenage years and it turning into a major issue. afraid

With our eldest, I told her about our struggle with infertility. I told her it was like we knew she was out there somewhere, we already loved her, but we couldn’t find her, so kept looking and looking and we still couldn’t find her anywhere, so we asked a dr to help, and finally we found out we were having a baby – we had found her! We were so happy. And the same kind of thing with her little sisters, just more high-tech.

Her reaction wasn’t “OMG how unnatural” or anything a closed-minded adult might think. It was more like wow, you wanted me THAT much that you kept searching and searching until you found me? It made her feel even more loved, if anything. The one negative reaction from her was this huge realisation of Oh no, what if you hadn’t come searching for me? I just reassured her that we were NEVER going to give up because we knew she was out there somewhere; we loved her so much; we would have had to try other ways to find her, but we eventually would have.

Kids at age 3 or 4 can easily comprehend the idea that their parents wanted a baby soooooo much, but it didn’t happen easily and then they found out that something wasn’t working properly, so they had to get some help from the doctor and/or get some spare parts from someone else. But emphasising that what they did have was the MOST important bit, which was an unwavering love and an important place reserved for the child who did arrive in the family.

For me, the counsellor in the NY Times article summed it up perfectly:

“What kids want to know is that they’re in the family they were meant to be in — that they belong to their mom and dad.” love2

IMPORTANT UPDATE (24/6/10): I’ve recently stumbled across this fantastic website for kiwi “IVF-lings”, kids conceived via IVF. It provides them a resource to find out about how they came into the world, and even to ask questions of doctors and embryologists. How cool is that?

Any particular books you’d recommend for explaining ART to kids? Please post a comment below! Here are some that I (and others) have found:

What is DHEA?

Friday, November 27th, 2009

DHEA (Dehydroepiandrosterone) is a naturally occurring hormone in our bodies which depletes as we get older. Here’s some info quoted from a UK site (<– click the link for more detailed info):

Description: DHEA, also known as “the mother hormone”, is produced by the adrenal glands and is the most dominant hormone in the body. The body converts DHEA into whatever hormone it needs (i.e. estrogen, testosterone, progesterone, and coriconsterone) In both sexes, blood levels of DHEA peak at 20. Thereafter, the levels steadily decline throughout aging, more dramatically with child bearing and with menopause. By eighty years old, the body only has 5% of the DHEA levels it had at 20! Many age-related conditions appear associated with lower than average levels of DHEA.

OK, so what’s all this got to do with infertility?

Dr Norbert Gleicher and colleagues at the Center for Human Reproduction in the States stumbled across the idea when a poor responder over 40 patient of theirs started having better and better responses to IVF – she had been secretly taking DHEA. Since then they (and others) have conducted some randomised trials and have seen some promising results in poor responders.

Here is a CBS News video of Dr. Gleicher, that older patient of his and a couple of other doctors talking about DHEA.

Want more info? Here are a few useful links to some of the research (you can find more through Google Scholar):

OK, sounds like a miracle cure – should I take it?

It does sound amazing, but the reality is that it doesn’t help all poor responders. In fact, the poor responders I have spoken to over the years have seldom had such obvious beneficial effects. Also, it does have some downsides for some people. Here are the ones I’ve become aware of:

  • Anyone who has higher than normal androgen or DHEA-S levels should definitely NOT take it because it can exacerbate these issues. Be especially cautious if you have PCOS or PCO, or any facial hair issues. Make sure you get DHEA-S and androgen levels measured first by your doctor and discuss the idea with him/her thoroughly to decide together whether it’s right for you. You have to do this anyway because it is only available on prescription in New Zealand. And even then, you can expect it to cost about $75/month.
  • If you’re under 40 then your DHEA levels may already be normal, so you wouldn’t benefit from it. It’s really only useful for those whose levels are seriously depleted.
  • Anyone who has a history or risk of ovarian cancer should not take it.
  • Some women have experienced hair loss and wacky cycles after taking DHEA.
  • Some women get too high levels of testosterone after taking it, and can end up with facial hair and deeper voices.
  • It can cause sleeplessness, especially if you launch straight into a high dose. If your doctor does agree and prescribes it, ask to start on a lowish dose (like, 25mg), take this in the morning (not the evening), and let yourself get used to it for a week or two before increasing the dose.
  • If you are taking Dexamethasone during your stim cycle to enhance response or help with implantation, the general advice is to stop DHEA before you start Dex because they apparently work in opposite ways.

So, are there any upsides? I took it myself for a couple of years, and had some upsides (also reported by others). The flipside of the sleeplessness thing is that it can make you feel like you have more energy. I also found it seemed to increase my metabolic rate, so I lost a couple of kilos while on it. But did it help my response to IVF? Well, not obviously, but it certainly didn’t hurt.

To sum up, the jury’s still out on this one. Do your research, talk to your doctor, get your DHEA-S levels tested first before agreeing to try it. Dr. Gleicher says that he sees many spontaneous natural pgs among women taking it while waiting to start IVF, so don’t wait until you start cycling. Many say it takes about 4 months before the effects really kick in. If you notice any adverse effects, talk to your dr straight away about whether you should stop it or reduce the dose. Make sure your DHEA-S and androgen levels are retested regularly to make sure they aren’t going too high.

When and how should I seek a second opinion?

Thursday, October 15th, 2009

Suppose you had a friend who was grappling with a cancer diagnosis and kept wondering whether his/her specialist had really considered all the possible treatment angles that might work. Suppose he or she had been receiving some treatment but there hadn’t really been any sign of progress. What would you advise? Probably a second opinion, right?

For some unknown reason, fertility patients seem to struggle with this notion that it’s somehow disloyal to seek a second opinion. Yes, it is awkward. But actually, it’s just good common sense if there’s any little voice inside your head saying “maybe there’s a better way …”  I know several women/couples who have switched specialist within the same clinic and have really agonised over how they are going to “break up with” their initial specialist. But the reality is this happens all the time, and people need to find the fit that’s right for them. My local clinic (FAA) actually makes that transition incredibly smooth and most of the drs are perfectly happy when it happens. [Actually, some may be relieved about getting rid of a “difficult” patient! ;)]

Even if you’re not actually switching specialists, it’s perfectly reasonable to seek out a second opinion if you want to. If you’re publicly funded you may have to pay for the second opinion consult, but that’s money well spent if it’ll give you peace of mind and/or some good ideas that can get you closer to building the family you want.

Remember, just as in any other profession, each individual specialist has certain diagnoses and treatments that they have a particular interest in and more experience in treating. Some gravitate toward the more straightforward cases (early 30s, no tubes, standard protocol, easy success); some specialise in particular issues (endometriosis, PCOS, thyroid problems); some are really passionate about taking on the really challenging cases (women over 40, poor responders, egg quality problems). It’s a good idea to ask around about who’s had success with cases like yours. And that’s a good place to start for a second opinion. Just think, women/couples in the States fly 5 hours from coast to coast seeking a second opinion; we are incredibly lucky that even the other end of the country isn’t that far away! And if travel is really a problem, you can often book a phone consult.

Over the years, one thing I’ve noticed is that the truly professional specialists I’ve spoken to have NO problem at all with my seeking a second opinion. They support my being proactive and are very happy to listen to any ideas I glean from those other consultations. They don’t let egos get in the way of my treatment. While working with my own specialist, I got a copy of all my notes and did a phone consult with a specialist in the States who’s considered the #1 go to guy for women with my particular diagnosis. My specialist in NZ was like nooooo problem – and was very open to the ideas I came back with. We did, of course, have a healthy debate about which of the ideas seemed to make the most sense in my case, but the main thing was that we had that discussion and we made some good decisions together about what to try next.

How do you know you should seek a second opinion?

Well, everyone’s different. For some people, it’s when they’ve just had a failed cycle, they can’t afford to do more than about one more, but the specialist is suggesting just going with the same again. For others, they’ve tried discussing other ideas with their specialist but feel like these aren’t being taken seriously or at least the reasons for not trying these things aren’t being adequately explained. For me, it was feeling like we’d already discussed and tried all the ideas we could think of together, so I needed a fresh perspective, a new source of ideas. Whatever the situation, if there’s a little voice in your head wondering whether you and your specialist have adequately explored all the possibilities, that’s a sign you might want a second opinion. It could just end up confirming what your current specialist is telling you, in which case that’s also useful because it eliminates doubts that you’re doing the right things.

If you think you might want to get a second opinion on your case, here’s what to do:

  1. Get a copy of your notes from the clinic so you know exactly what protocols you have tried already, any testing that’s been done, how you responded to treatment (including E2 levels, follicle sizes, the embryologist’s ratings of embryo quality, etc).
  2. If you can, make a 1-2-page bullet point summary of your history and any testing. This makes it a LOT easier for the new dr to get up to speed quickly on where you are at.
  3. Ask around (e.g. on the Everybody BB’s Infertility forum) to find out which drs at which clinics have had success with your particular diagnosis and history.
  4. Call that dr’s clinic and speak with his/her receptionist; ask for an in-person or phone appointment; ask where and how to send your summary/notes/file.
  5. You don’t have to formally tell your current specialist that you’re seeking a second opinion, but you’ll probably end up informing his/her nurse or receptionist when you request a copy of your file/notes. It’s a courtesy to mention it, but if it’s causing you anxiety then don’t force yourself to. The specialist will understand.
  6. If you are doing a consultation with someone who works at another clinic from your ‘home’ clinic and if you like what they are suggesting as a new plan, discuss with them whether it would be feasible/advisable to (a) ask your current specialist to follow a new protocol; (b) cycle at your local clinic but with the new specialist either calling the shots or providing advice to your own specialist; (c) travelling and doing the whole cycle at the new clinic; or (d) doing egg collection and transfer at the new clinic, but monitoring (ultrasound and bloodwork) locally. All of these options have been done around the country at one time or another.
  7. Don’t worry too much about having to persuade your current specialist to try something new – quite often the specialists will just get in touch with each other and work out how best to work together. Ask your ‘second opinion’ specialist what he/she thinks is the best way to handle this. The politics and the details of this shouldn’t be your problem – you are going through enough stress already!
  8. Don’t worry too much about the ‘disloyalty’ issue either. You have the right to expect specialists (and any healthcare provider, for that matter) to be professional about second opinions and NOT to make you feel guilty about seeking one out. If you find someone is not being particularly professional about it, that tells you more about them than it does about how you handled it. Your priority is to get a baby/family out of this, and their priority should be to help you achieve that dream. The specialists won’t be a part of your life forever, but your babies will!

Infertility Humour – IVF Barbie

Monday, October 5th, 2009

No idea who the original author of this is – it’s all over the net. But definitely one of the classics!!!

Not a completely accurate reflection of the kiwi situation, since there’s no such thing as health insurance that covers infertility here. Also, in the States they refer to fertility specialists as REs (reproductive endocrinologists).

Still, lots of parallels and I am sure those of you who’ve done the IVF rollercoaster will recognise the various Barbies and Kens and get a laugh or two out of it. Enjoy! 😉

————————————–

When Mattel were looking to design their new Barbie, IVF Barbie, they soon realized that there was not one universal Barbie that would accurately portray the spirit of IVF Barbie. So they decided they would come out with a few variations thereof.

Newbie Barbie:
Newbie Barbie, also known as BabyDust Barbie is a bright, perky, Barbie, filled with optimism and confidence that IVF Will Work. She is thinner and usually younger than the other IVF Barbies. Her accessories include rose-tinted spectacles, a positive bank balance, healthy insurance coverage and a million questions. Newbie Barbie has lots of other Newbie Barbie friends and they congratulate each other on a job well done. This Barbie only says pleasant, optimistic things and believes that Attitude is Everything. Their motto is Think Positive!!

Pregnant Newbie Barbie:
Pregnant Newbie Barbie is the big sister to Newbie Barbie. She is still slim, now with a cute belly. She is proof that IVF Does Work, usually the first time. She also comes with rose-tinted spectacles, a positive bank balance (only very slightly depleted) and total confidence that All Will Be OK. She glows when pregnant and liberally uses baby dust when playing with her sisters, the Newbie Barbies. She comes with Very Cute maternity clothes, a double stroller, and a fully decorated nursery even though she is only just a few weeks pregnant. Her motto is ‘See! Thinking Positive Works!!’. Newbie Barbie and Pregnant Newbie Barbies are great playmates and you can collect them as a set.

Joiner Barbie:
Joiner Barbie is cousin to Newbie Barbie and Pregnant Newbie Barbie. Joiner Barbie comes with a group of friends just like her, and this group calls themselves by the name of a furry animal or has reference to a season. Think Spring Blossoms or Bubbly Bunnies. Accessories include a chart or table of some sorts, lots of smiley faces, baby dust (a glitter-like tub of ground up positive attitude that apparently has the power of hocus pocus to make one pg), declarations of eternal friendship and love and lots of ((((hugs)))).

Veteran Barbie:
Veteran Barbies are not at all related to the Barbies above. Veteran Barbies are the Anti-Barbie. They are a whole lot plumper than the Newbie Barbies, less perky (in boobs and attitude), have grayer hair, a largely negative and over-drawn bank balance, plenty of bruises and marks and a slightly cynical attitude. They are dressed in comfy track pants with elasticated waistbands. Their accessories include a wealth of knowledge of reproductive procedures and protocol, the ability to practically do their own cycle, a snarky attitude, little tolerance for stupidity, a well defined sense of humor, the ability to laugh at themselves, a fondness for wine/beer/crack and an aversion to pineapple, baby dust and Newbie Barbies. This aversion in its more severe form can be allergic and acerbic. Veteran Barbies tend to swear quite a bit (especially when playing in the Barbie House with Newbie Barbies and Pregnant Newbie Barbies) and parental guidance is advised.

Pregnant Veteran Barbie:
Very similar to Veteran Barbie, only now with an added dose of neuroses and paranoia. Continuously and obsessively over-analyses every twinge, convinced that the end is nigh. Only buys stroller and decorates nursery when in eighth month. Accessories include disbelief and a sense of not quite belonging, and 10 home pregnancy tests just in case the first one was faulty or the clinic made a mistake with her beta. Pregnant Veteran Barbies have been known to pee on the sticks up until the day before giving birth just to see the two lines.

Celebrity IVF Barbie:
Celeb Barbie comes in two versions: Denial Celeb Barbie and Out of the Closet IVF Barbie. Denial Celeb Barbie does not play with the other Barbies and pretends not to be an IVF Barbie at all. She drops the IVF part of her name and thinks ‘Donor Eggs’ is a swear word. She pretends that her twins at age 49 are Natural and she did it all On Her Own. She also claims her boobs are her own and that she has never had a face lift, hence her credibility is not at an all time high. Out of the Closet IVF Barbie is the preferred Barbie. We like her.

IVF Ken:
Ken is a wanker. Sorry to sound so harsh, but besides being a wanker there is very little that Ken does in IVF land. Sometimes Ken administers shots, hands out tissues and occasionally accompanies the Barbies to their Dr’s visits (normally during the first few cycles only), but mostly he is just a wanker. If you choose an IVF Ken, then try and get one that also cooks or does DIY. Otherwise just sit him down in front of your Barbie TV and let him know when it is time for him to do his, um, contribution. Mostly the Barbies love their Kens, unless Ken is being particularly insensitive or obnoxious, then he becomes a wanker in all senses of the word. Some IVF Barbies don’t even have a Ken and they do just fine. If you do find a good Ken, hang on to him, don’t swap him with your other friends.

RE Ken:
RE Ken is the all knowing, all seeing Ken. He might be a wanker, or not, but here we are talking about being a wanker in the figurative sense. He could also be very nice. He may call you by your first name but you may only call him Doctor. His accessories are many and wonderful. He comes with a zooty new car (normally very expensive), a smart house, a very healthy bank balance and a holiday home or two. RE Ken knows every thing and is considered second only to God. Some RE Kens are kind, some are not. They are all rich. Ken’s office is filled with fun toys like ultra sound machines, dildo like probes, waiting rooms filled with the different types of Barbies (some annoyingly come with miniature Barbies or Kens in tow), medicines, procedures rooms etc. RE Ken also comes with a free Nurse (Ratchet) Barbie, who will not return your calls, will hand out annoying platitudes and generally add to your frustration levels. When purchasing RE Ken you will get Ultrasound Ken and BloodDrawer Ken. Unfortunately they come as a package deal and you are not able to get RE Ken without them, they aren’t as much fun. However, you will need a RE Ken if you are going to play the IVF Barbie game.

Mattel foresee a big demand for these Barbies and say that for extra fun and lively interaction, collect the full set of IVF Barbies, put them in the Barbie house together and see the sparks fly.