I recently met the mom of a kid with an AVM – it has been diagnosed but it hasn’t ruptured. Still, the parents have done their homework, identified a good doctor, inquired about health insurance logistics, sought job transfers and are planning to relocate to another state in order to be near the medical help they have identified should the need arise. Note that all of this preparation has been taken without any rupture – these parents are rearranging their family’s life just in case.
You might think that moving to another state is a little much, but I figure that as parents, the threat of a bleed happening in their child’s brain is enough to merit extreme action. (Maybe I’m biased, but I applaud this family’s proactive plan.) Sometimes you gotta do what you gotta do, and although they are moving in order to have ready access to medical intervention, I hope they never have to use it.
They are living with a big “what if,” but my family dealt with the fact that major surgery would be required. I’m not even talking about me – my big brother was the one diagnosed with heart issues when he was born, and it was clear that he could not live without surgery. So Tanpo wrote letters (not kidding – snail mail letters, like with a stamp) to potential heart surgeons and finally settled on one in Alabama. (Side note: I have to ask Dad how he managed to identify candidates. I honestly don’t know how one would have approached such an issue before the Internet.)
So my family (Dad, Mom, and my brother and sister – I wasn’t born yet) moved from Singapore to the United States. (Australia was a candidate – Hi, Australia! – but they ultimately decided on the US.) They didn’t move to AL – they moved to the Washington, D.C. area since Dad was working for the World Bank at the time (I think). Transitioning into the private practice of law was another reason to move to America, but I think Ernie’s need for surgery was the real catalyst.
These days you would have no idea my brother ended up having two heart surgeries. He’s too busy running around after the “wild ones” + Peter. My brain issue has dominated the landscape of our family health history lately, so a lot of times I forget that my brother was an ill baby because he’s so able-bodied now. Side note: the reason I started putting kale and spinach in my juice is because I learned it from Ernie – he makes this wonderful kale and carrot juice (yum!).
So my family made a major change in order to secure the services necessary for my brother to live. When I put it that way (it’s necessary for the child to live), it suddenly doesn’t sound like so much heavy lifting. But things like relocation are heavy lifting, especially if you have other children in the equation. But when I see my brother, with Ruthie and 3 kids xxoo, I dare anyone to question whether it was worth it.
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That last line is the clincher, for sure.
I enjoyed reading that.
Interesting story about the child with an unruptured AVM. Is there no way to remove the AVM before it bursts? Would it be essentially the same as the surgery post rupture? When you had yours I read quite a bit about AVM but never found anything about preventing the rupture, which I thought odd. It is very rare that they discover it before it bleeds.
Yes, people will often only discover it if it becomes symptomatic (eg their head aches) or if they are getting scanned for another reason. I think there are non – craniotomy treatments like embolization or gamma knife, but I don’t really understand these. The thing is they are still a big deal bc someone is messing around in your head and I’ve heard some people get told that bc of the location of their AVM it can’t be treated. Bye – r told me she’ll call you and hear little M jabbering in the background. I love that!!
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