I believe in following my maternal instincts in almost every case. I learned, the hard way, with Evelyn to follow them even if the doctors and nurses and medical professionals say one thing and I feel compelled in a different direction.
Maxine has many of the symptoms of an overgrowth disorder called Beckwith Wiedemann Syndrome. Another mama of a child with this syndrome actually told me to look into it many months ago. When I first read about it, a shiver went down my spine as I felt like I was reading about Maxine. We went to the geneticist to talk about it–the appointment was horrible and turned into a lecture about breastfeeding. You can read about that appointment here. The short version is that she blew us off and told me to stop breastfeeding my seven month old baby. We kind of had a polite argument where she borderline told me that I was abusing my child and I borderline told her she was clueless about infant nutrition.
Fast forward to now. One of the major symptoms of this disease is an enlarged tongue. The geneticist told us that she didn’t have one. But I would bet my last dollar that she is sadly mistaken. People are constantly commenting on her tongue size. She is constantly moving it around her mouth as if it doesn’t fit.
Something is not right. I feel it way down in the pit of my stomach. I am angry with myself, as a mother, for allowing myself to be shushed by a doctor. Granted, I didn’t follow her feeding advice. But I didn’t push back with regard to this syndrome. I quieted the voices in my head that were telling me to push further– to get a second opinion.
I just left a message with our primary pediatrician. A sheepish message. Because there is a good chance that I am wrong. And I really don’t want to be that mother that is always complaining about medical professionals. Hell, I am that mother but damn it, I have good reason to complain. I spend a shit ton of time in doctor’s offices between the two girls. Of course we are going to run across some duds. And for god’s sake, even if I am wrong (and I hope I am) she did discredit herself as a professional by telling me to wean my seven month old baby and feed her solids instead of breastmilk. She is wrong about that.
And PS–this syndrome is fairly benign in most cases but requires careful monitoring. Typically, kids outgrow it. But it could explain a lot of things about Maxine’s size relative to the amount that she eats, the fact that she has difficulty moving food around her mouth, etc.
I try to be positive. I try to tell the negative voices that creep into my head to zip it. But if I am right about this, heaven help that doctor because I am going to unleash the mama tiger that is tied up inside of me. Doctors aren’t perfect, they are entitled to make mistakes and they don’t know everything–I don’t expect them to. But I do expect them not to be assholes while they are spewing BS. If I’m wrong, I’m happily eatin’ crow. Stay tuned.
love explosions 