instincts–rated R for salty language

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.

fat thursday

by now, i’ve lost my rose colored glasses when it comes to doctors.  i know they can’t fix everything.  i know they don’t know everything.  and i sure as hell know they don’t dictate the choices that i will make for my family.  the good ones know these things as well.  the bad ones don’t and try to exercise the authority that they think the initials after their names gives them.  um no.

so little chunkadunk, maxine. we took her to the geneticist today.  said geneticist was already on my crap list for not having gotten back to me for almost six weeks after she said she would.  separate issue, regarding evelyn.  perhaps this geneticist did not appreciate the fact that i complained to evelyn’s medical social worker about her utter unresponsiveness.  but i digress.

maxine had an appointment to rule out overgrowth disorders today.  i assure you that i was not at the geneticist to seek advice about infant breastfeeding or infant nutrition.  she ruled out the potential genetic issue for which i am majorly relieved; although, part of me wondered if she hadn’t ruled that out before she even saw us.  the questions did not center around genetics.  in fact, they were almost entirely about maxine’s feeding schedules.  i, certainly, understand that these questions had a very legitimate place in our consultation. however, some attention should have been given to her actual field of expertise.  GENETICS.

she, apparently, wanted to demonstrate how very little she knows about the subjects on which she preached.  having, obviously paid no attention to my answers, she proceeded to tell me that my exclusively breastfed child was obese.  her answer?  wean the seven month old baby and start her on solids instead.  anyone that knows anything about breastfeeding, this is like telling an overweight adult to replace salads with cheesecake to lose weight.  and wean a seven month old?   credibility lost.

how dare i argue with a doctor, right?  that’s what she thought too.  mothers that aren’t doctors cannot be educated and well informed. certainly, they shouldn’t be so brazen as to defy a god doctor with a differing opinion.  oddly, the doctor could not back up her opinions with evidence and the mama could. how about that?  but that mattered…NOT.  i should bow to her alleged anecdotal evidence.  sorry to say, doc, “because i said so” stopped working on me about 25 years ago.

as much as i enjoy being borderline accused of abusing my child by breastfeeding on demand as my instinct and solid medical evidence indicate i should, i’m taking the medical records for both of my children and moving them to dartmouth.  dartmouth.  where i hope that the doctors will either have a clue about breastfeeding or be smart enough to shut it.

after all this, i was so frustrated that i cried.    as mamas, we are judged, questioned, and criticized for following our instincts and nurturing our children in a way that feels right.  it is no wonder that women have trouble establishing and maintaining a successful breastfeeding relationship in this country.  i was so thankful to have a la leche league leader as a friend to call.  it is so lovely to be lifted up by a fellow mama…as only another mama, fighting the good fight, can.