A Tale of Two Experts

Mama friends, I have a story for you, to encourage you to listen to your mom instincts.  I know how hard it is to stand up to “the experts,” (your child’s pediatrician, teacher, therapist, etc.) when you know something isn’t right, and they are hearing you but not really listening to you.  I hope that my story will encourage you to advocate for you child, even if all you have to support you is your mom instinct.  Your intuition really does matter.

My story starts when Chloe, my second baby, was born.  I knew in the first few weeks that something wasn’t right; while nursing, she would stop and start a lot, crying out and looking uncomfortable.  She would gasp for breath for a few seconds, then keep nursing for a bit, then the cycle would repeat itself.  I mentioned it to my pediatrician (my “gut feeling” was that she was in pain), and he was very nice but fairly dismissive.  He asked a few questions to gauge if it could be reflux (which it wasn’t), and then concluded that it was likely gas.  I understood his conclusion, but I didn’t agree.  She was not a very gassy baby, and it only happened while nursing, not afterwards, and Bella (my first) had been quite gassy, so I knew what a gassy baby looked like.  My instincts said it was something else, but he was the expert, so I tried to tell myself he knew more than I did, ignoring my feelings.

For the whole first year of her life, Chloe continued to cry during feedings.  But when I would bring it up to first one and then another pediatrician, they weren’t concerned because she was “eating and pooping enough.”  She was very petite, her height and weight seldom even registering on the percentile chart, but because she was proportional, and because I’m a slender woman, the doctors were never concerned.

As a toddler and older child, she has been a very slow eater, often holding food in her mouth (sometimes for as long as an hour!), and as she became verbal, she would sometimes say it hurt when she ate.  But in a true display of the British stiff upper lip, she rarely complained, and we, too, became a bit dismissive of her comments, chalking it up to toddler dramatics.  She would sometimes choke when she ate, but again, we would dismiss it as her eating too fast.  But Chloe’s pretty tough cookie – if she says something hurts, it must really hurt.  She’s not one to be overly dramatic, so we should have known.  In retrospect, I think that the message we heard from the doctors had started to sink in: “Don’t be overreactive parents.  This is all normal kid stuff,” and we regurgitated it obediently to our daughter who was trying to tell us that something wasn’t right.

Finally, a few months ago, I decided enough was enough.  I made an appointment with Chloe’s doctor to specifically address her digestion, and I went in with the aim of getting to the bottom of what was going on.  I knew, as I have always known, that there was something wrong, and I wasn’t going to leave my doctor’s office without a referral to investigate her issues further.  I knew I might end up looking like a mama bear if nothing came of an appointment with a specialist, but I didn’t care.  For the first time, her doctor really listened to me, heard my concerns, and referred me to a specialist.

Over the last few months, we’ve navigated our way through nutritionist and GI appointments, x-rays, and finally a barium fluoroscopy, but when the doctor beckoned me over to show me what she saw on her screen, I nearly burst into tears; Chloe’s esophagus is crooked.  Where most of ours are straight, making swallowing quick, easy, and painless, eating is a labored task for her.  She chokes easily, struggles to swallow food around the bend in her esophagus, and has adapted to this malformation of her digestive tract by holding food in her mouth for up to an hour, allowing it to dissolve to a swallowable consistency for her.  So when that tiny infant I nursed would stop feeding, cry, and choke, it really was because she was in pain, just like I’d tried to tell doctor after doctor.  And no one had listened.  And no one had listened.  Until finally, I insisted they listen.  Had I not, we would likely have never discovered this problem.

I’m working my way through a long string of emotions right now, at the forefront being relief to have discovered what was wrong.  I am eternally grateful to my GI specialist who, from the moment we stepped into her office, listened to me, placed value in my concern (rather than skepticism), and worked with me to figure out what was really going on.  But I also feel angry and let down by a system that wouldn’t listen to a mama who was asking for help.  I’m not trying to demonize my doctors – I’ve actually liked them all, and there have been many times that they were there to provide exactly the help my kids needed when they needed it, and for that I’m grateful.  But my daughter would have slipped through the cracks had I not been brave enough to argue with them, to continue expressing my concerns, and to refuse to take no for an answer.  My daughter needed them, and they nearly let her down.

I am not an expert on the field of medicine.  I need my children’s doctors to be the medical experts and help me with the knowledge I lack.  But I am the expert on my child, and no amount of medical school can take the place of the intuition formed from carrying a baby for nine months, laboring to bring it into the world, holding and rocking and watching that baby sleep, and then being there every day of his or her life.

To my doctors, I need you to see me as your partner in my child’s health, to understand that there are many things about my child that you will never know, but I do, and to offer me the respect of treating me like I, too, am an expert, and not an inferior whose instincts can’t compare to yours.

To my fellow parents, listen to your instincts, and insist that your doctors listen, too.  At worst, you’ll be seen as an overreactive parent, but at best, you’ll be your child’s hero.  I’m grateful that it didn’t take a tragedy for me to realize this lesson, and I hope it won’t for you, either.

I met a mama at the park today whose grown son had died tragically, right after marrying the love of his life.  Why did he die?  An undiscovered malformation of his esophagus.  Something that could have been easily corrected had it been discovered.  Instead, a mama is now grieving the loss of her son, a sister, the loss of her brother, and a wife, the love of her life.  You never know how your instincts might save your child’s life.  So be bold.  Your child needs you.