Intestinal malrotation

Question

My son was just diagnosed with it--he has been throwing up since birth, and they original thought it was GERD and treated it with meds. He hasn't been throwing up as much as is beginning to gain weight, which is good. But I am super concerned about the malrotation. My doctor said that as long as it is not causing a problem, we should let it alone...but I am freaked out and worried. I feel as if I am sitting on a ticking time bomb, as it can be fatal in infants!!

Has anyone else gone through this as well? What did you do? My motherly instincts tell me to be proactive, but I don't want to poke a bear that may never "wake" so to speak...

Help!!

Answer 1

I say be proactive, because you'll worry less (if that's possible-worrying seems to be all we mothers do). I would take him to a specialist, have all kinds of tests done, etc. That way, you will be more reassured and just in case something can be done to treat/resolve the intestinal issue, you have knowledge, know the signs to look for, etc. Knowledge is power in this case!

That said, about waking the sleeping bear...I've done it both ways. My first son had a bifid uvula which usually means nothing. However, since it is linked with aortal anuerysms and my husband's twin had a brain anuerysm, I decided to have all the tests done on my son's heart and went to a geneticist just for extra reassurance. They won't do an MRI because they say that brain anuerysms aren't hereditary, and if my husband doesn't have one (who knows if he doesn't) then my son shouldn't have a problem. So sometimes I still feel as if I'm sitting on a ticking time bomb, even though three specialists have told me not to worry about a thing.

My other son has assymetrical crying facies, which I'm told could lead to heart problems, so I practively had his heart checked and all is fine.

From my experience, being proactive doesn't necessarily poke a sleeping bear, it just gives you more peace of mind and plenty of information "just in case".

Good luck! I feel your worry sister! Doctors always tell me don't worry, all is fine, statistics are ...blah, blah. It doesn't help my worries any.