Saturday, December 21, 2013

"Support" Group

Yesterday, after we got home from our appointments, I posted in an online support group Jon and I joined for families with kids with HLHS. I just did a short post saying that our doctors were recommending a heart transplant instead of the three stage surgeries and I asked if anyone else had been through that or had any words of wisdom for us as we move forward.

Turns out,  the "support" group is bullshit.

All of the responses were extremely negative, judgmental, aggressive, and attacking. They all assumed that we were at some podunk hospital with stupid doctors (even though PCH is one of the top rated children's hospitals and our surgeon has a personal record of 100% success with HLHS surgeries) and kept saying we were being ridiculous for even thinking about a transplant. What I found ridiculous about their comments is that kids with HLHS who go through the three stage surgeries often need a transplant eventually. Some are able to live with the jimmy-rigged system that the three surgeries set up but more often than not, they need transplants so Max will actually have to undergo fewer surgeries. I'm not saying that one way is better than the other, I just found it more frustrating that in a group that is supposed to be supportive, we were ganged up on by mean, judgmental people.


However, one of our surgeons did warn us that people might have this response because a lot of people see transplant as a failure of other therapies but with our case, it's actually going to be the safer route for Max and his odds of survival are better. We have just realized that we are going to make the best possible decisions for our son and while some people might not understand and might judge us for them, we have to do what we feel is best for him. My aunt gave us excellent advice to find good doctors and trust them. She also advised us to not listen to anyone on the internet as they are not doctors and aren't qualified to pass judgment. It's just a little disappointing to look to a support group for support (imagine that!) and instead be met with so much negativity.

We have a couple days off from doctors and then on Monday we have an appointment with the perinatologist/OB . . . I wasn't super thrilled with my experience last time but I'm trying to give them the benefit of a doubt that maybe it was just a weird day in the office. However, if our experience isn't a positive one, I'm going to try and change doctors. Luckily we love our cardio team :-)

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