Too much excitement just might kill me!
Anyone who has read my recent(ish) posts will know that we’ve been ummming and ahhing about a possible baby #2. If I weren’t infertile we may well have a second already, without so much consideration. What can I say, I like to over-think things!
But it turns out that this may be a blessing in disguise.
This weekend, I spoke to Google MD about the genetics of neuroblastoma (Monkey’s cancer). I couldn’t tell you why it has taken me this long to look it up, but it has.
It turns out that only 1-2% of neuroblastoma are familial, and they attribute most of that to a heritable ALK gene.
Which means the majority of neuroblastoma is a somatic mutation – except we now know that Hubs had a cousin who died from neuroblastoma.
She would be a fourth degree relation to Monkey, and we feel that the likelihood of the two being random coincidental mutations is small. I have found studies which have used fourth degree relative pairings when identifying the genes involved, so it seems to be significant at that level.
The gene in question is autosomal dominant, so assuming Hubs is carrying it, there would be a 50% chance of it being passed on to a child. And anyone with the gene has a 50-60% chance of developing neuroblastoma (we’re not talking increased risk, we’re talking straight up odds). Correct me if I’m wrong, but I work that out to mean that we have almost a 1 in 3 chance of having another child with neuroblastoma.
To which I say – oh my hell no.
It would be totally unfair for us to take that kind of risk for a future child. No child should go through what these kids go through. We got lucky this time that Monkey’s treatment was mild and successful, but the genetics do not determine how severe the disease will be.
However, I’ve learned from other mums that the test for this gene is not available in Australia – if we wanted to have Hubs tested it would have to be sent to the US, and we have no idea of the cost involved.
I admit I’m not a geneticist, and we will be going to the hospital for genetic counseling when we can get an appointment (probably in a few months), in particular so we can pass on relevant information to Hubs’ brothers who have yet to procreate. But even if they shock me by telling us they don’t think we’re at increased risk, I don’t think we’ll believe it. I would only think that there is some other genetic factor they just haven’t identified yet.
So we are for sure done. We were wavering anyway, flip-flopping between lifestyle, guilt, infertility, finances, and dread, but this is the totally concrete and utterly justifiable reason that we shouldn’t have to need, but somehow kept searching for, that will allow us to close the chapter on the baby-having part of our lives and let us move on to the miracle-child loving part.
I feel relieved to have closure and to know that I really cannot change my mind any more. And I kind of feel horrible for trying to get pregnant before knowing this. So irresponsible.
Also, if anyone out there happens to be a genetic counselor, please jump in on this one!