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Thursday, November 05, 2009

Fertility Treatment - Cure or Business Model?

The current trend in fertility treatment is the use of IVF and ICSI. So much so, that here in Australia, about 4% of all children born have been created this way. Or to put it another way, there will be one IVF child in each classroom. That is quite a large number.
While the causes of this can be numerous, apart from leaving things too late, one of the larger causes can be genetic problems. For example microdeletions in the DNA can result in poor sperm formation or low counts. ICSI can solve the problem of not being able to conceive but it does not “really” solve infertility as the person is technically still infertile. The same can be said with maternal problems. These treatments may give a couple the baby they so desperately crave, but it does not cure their infertility.
And when the cause was genetic in the first place, these treatments have just created another person who will also be infertile. But I hear people say that that person can then also go on to have treatment themselves. The problem is that by creating one or more offspring that will already be infertile rather than have it develop through age, lifestyle factors, disease, environment (the list goes on), we are increasing the proportion of people in the population who are infertile. So rather than treating and ameliorating infertility all we are really doing is exacerbating the problem and thereby increasing the burden on an already strained public health system that subsidises these treatments.
For fertility clinics it is a fantastic way of ensuring you will have customers in the future. Not a bad business model indeed.


Fryingpanorfire said...

Hi Damian, this is an issue that affects me directly (and any children I may have directly). It turns out that after several years of essentially catastrophic 'trying', that I am a carrier of something called a balanced translcation (BT). People who are carriers of BT, and they can be male or female, have a much higher risk of conceiving babies who carry an unbalanced translocation (UBT). UBT babies can die at any point in the pregnancy (early or late miscarrage), or, if they survive beyond infancy, then they will often have profound mental and physical disabilities. It's perfectly possible to conceive a baby that has normal or balanced chromosomes, but people with BT often run into the problems I've just outlined. So the goal of a parent who now knows they have BT is to conceive a baby that either has normal chromosomes or is a BT carrier themselves. So yes, if their baby turns out to be a BT carrier, then chances are they in turn will have problems when it comes to having a family.

Options include continuing to try naturally until you simply cannot take the miscarriages or terminations any longer, IVF with PGD which can screen any embryos you might be able to create for UBT, gamete donation, adoption or accepting that living a child-free/family-free life is actually your destiny.

Me and my husband have been together since we were 19 and 21, and got married when we were 29 and 31. We started trying for a family a year later. We were lucky and had a BFP within six months of trying, but this ended in m/c at 6wks. I took us another year to get pg, and this time i was petrified of going through another m/c. But instead they found abnormalities at the 12wk scan. We were poleaxed. A CVS came back clear for chromosome abnormalities. The abnormalities deteriorated and we took the decision, on the hospital's advice, not to continue with the pregnancy. I gave birth to a baby boy, who we named, at 20wks. I fell into what can only be described as quite a profound depression, but we continued to try. It took us another 18 months, but we again got a BFP. Now I am petrified. We go to the 12wk scan and this time it is fine - our baby looks perfectly healthy for this stage of the pregnancy. We are very relieved! But at the 20wk scan, they find an abnormality in the brain. This is not a worst nightmare, because I simply could not have imagined such a scenario. We have an amnio, but again this is clear for chromosome issues. The brain abnormality deteriorates, and after another nine weeks of agnonising, we find ourselves somehow agreeing, again, that it is probably better for our second son not to be born alive. I have him at 29wks. Now I have a nervous breakdown. Often I wish I'd kept him, let nature take it's course, as at least I might have a child to love, even if he was profoundly disabled. But perhaps that would be selfish of me. Several months later, they finally run a test, callled aCGH, that shows both our babies had UBT. Because they both had it, they know either myself or my husband must be a carrier for BT, and it turns out it is me. My parents were tested, but neither of them have it, so I am a one-off. So essentially, my whole life, I feel I have been a ticking time-bomb waiting to happen. Just waiting to ruin my lovely husband's life! So something about myself has been profoundly wrong with me, at an atomic level, and I never knew. Sometimes I do feel that my whole life has been a lie up to now.

Fryingpanorfire said...

So what now? We've had one round of IVF/PGD and we didn't get any unaffected embryos. We are going to do another cycle next month, but statistically I know our chances of getting an unaffected embryos are very low. And if we do get one, the chances of that emby implanting and becoming a baby after nine months seem near-on impossible. Not a zero chance of course, it does work for some people, but realistically the chances are very low.

So if my eggs are essentially damaged goods, and have been since I was conceived, many people in my position start to consider egg donation.

So now I'm looking at what donor children think of the way they came into the world. If many are traumatised/resent that they have been purposely deprived of half their genetic parentage does not surprise me in the least. I do not believe that my personal desire for a child gives me the right to have a child at any cost. Separatly, I do wonder about my and my family's ability to love a child that would not be genetically related to us. I think it would matter a lot. I'm sure my husband and his family would be fine as they would consider the child part of the 'tribe', but family relationships are complicated enough, even when you are apparently genetically related, that what would be the impact of bringing a baby who is not related into the mix? I don't have the answers to any of these questions. But at least blogs like yours make me consider the implications. Thanks

damianhadams said...

Dear Fryingpanorfire,
thankyou so much for sharing your story. It must be incredibly hard and heartbreaking for you and your husband. You are doing research to help you with whatever future decisions you need to make which is fantastic. I wish you all the very best for the future.
Kindest regards