Aortic aneurysm and being pregnant

I s’pose it’s about time I talked about the health issues for me associated with having a baby. I have an aortic aneurysm, which is a ballooning of the aorta. Mine is in the aortic root (which is where the aorta connects to the heart), and is currently around 4.4cm. The upper range of “normal” is 3.8cm. My dad and aunt died of aortic aneurysms when they were 28 and 24 respectively, and their aneurysms were both in their aortic root, so it’s definitely genetic and not just a coincidence.

The cardiologist over here I see is David Liang at the “Stanford University Center for Marfan Syndrome and Related Aortic Disorders” who is fantastic. I was seeing a cardiologist back in Australia, but they were nowhere near as knowledgeable as the guys over here in the US.

Anyway, so Dr Liang said if we wanted kids we should do so sooner rather than later because if my aneurysm got any bigger, it would be too risky to go through pregnancy. So my Depo Provera injections finally started to be wearing off a year after my last injection, and Andrew and I were deciding whether we should wait a bit longer, or start trying to have kids. Next thing we knew, I was pregnant. How ‘bout that? Decision made!

So I booked in for the high risk obstetrician, and she ended up bringing our first appointment forward a week to recommend termination to us. Apparently they see young people with aneurysms who get pregnant as very risky because of the lack of data. The most common sex and age group for non-genetic aneurysms are older males who funnily enough don’t often get pregnant :)

There was so way we’d get a termination, I was grinning like an idiot the entire time she was telling me she didn’t agree with us being pregnant – I didn’t care, I had a little baby growing in me and was pretty bloody excited!

We’ve since had another OB appointment, and I’ve spoken to someone else who has genetic aortic aneurysms in their family. I now have more information and understand the consequences a lot better and fully realise the risks of me being pregnant.

So during pregnancy the body’s hormones make things like connective tissue stretchy to let the child grow. This is bad for things like aortas that are already bigger than they should be. The heart is pumping a lot harder to support the little life form, which is why a lot of pregnant people get high blood pressure. For me it means the blood is pumping harder through the weakened, stretchy aneurysm. So things could go wrong at any point.

The risk is my aneurysm could dissect (split). When this happens, it is generally rather painful - it was described to me by this girl who has aneurysms in her family and had a dissection 3 years ago at age 28 as “like someone had ripped my chest open with a chainsaw and someone was blowing a blow torch inside”. It requires open heart surgery to replace the damaged aorta, and is a long surgery with a very long recovery time.

I previously wasn’t too worried about the risks as I know they’re pretty low, and I didn’t really understand how the body changes during pregnancy (except for the obvious changes), and what it means.

Now I have a much better idea of the risks involved, why it could change all of a sudden, and the girl I’ve been talking to about genetic aneurysms said that in her family they seem to be getting dissections at between 4.2-4.6cm (mine’s 4.4). I had no idea they COULD dissect that small. So it’s a massive reality check for me, and the risks are all of sudden a lot more real, and it’s all sunk in.

Understanding this a lot better now, if I could go back in time and have the choice again of getting pregnant again, I probably still would... I am confident that if I do end up having a dissection (which is a very slim chance, but still a chance), that I am near the best cardiologists and surgeons in the world, and will be well taken care of.

It all hit me on Wednesday, and was still sinking in yesterday and I was very shaken up about it all, and quite scared of the consequences, but I got it all out of my system, and feel much better for it today. I hate the fact that there’s absolutely nothing I can do about it, and there’s nothing else the doctors can do about it - they won’t operate unless it grows suddenly, or reaches the 5/5.5cm mark over time. I’m on beta blockers to keep my heart rate and blood pressure down, and I just have to be very careful – they recommended easy walking as the maximum amount of exercise, and to do nothing to get my blood pressure or heart rate up.

We’d also planned a trip to Dublin in June to renew our US work visas since Andrew will already be in Edinburgh for a conference, but they won’t let me fly because I’ll be 6 months pregnant then and my heart is working very hard at that point, and the risks are too high. As well as that, if anything goes wrong, I’m a long way away from my doctors.

So hopefully Andrew can renew his work visa, and mine is dependent on his, so the lawyers should be able to sort something out so I can just go to Canada to renew, or even better, do it from the US (apparently you can’t reapply from inside the US...)

So that’s the latest on the health dramas for those of you who have been wondering.