Cancer · Chemo mom · Childhood Cancer · children · Family · Histiocytosis · liver disease · Motherhood · Parenting · pediatric cancer · Pediatricians · Physician · Uncategorized

Open Letter to Pediatric Physicians

Dear Pediatricians,

First, let me start by thanking you.  You have gone into an impossible field that forces you to see children in pain or dying, and yet you come to work every day and provide care and work towards solutions for children.  You have to help demanding, angry, and scared parents, even when you are hungry, tired, pushed too far, too hard, and are otherwise just done with the world.  You have to find a solution in a world where one symptom can mean so many different things.  You have years of hearing the same complaints, so much so that it feels like it’s always the same simple thing.  Is a rash an allergic reaction?  Is it a cold?  Is it cancer?

I have navigated through your world for 8 years now, both as the parent to two healthy children as well as the parent to one very, very sick little girl, and while I recognize that what you do is neither easy or fun sometimes, I thought it might help to hear a few recommendations that could make your job a little easier, coming from a calm voice.  These recommendations will help you deal with us parents, and may even help you save a life.

  • Listen and make sure you actually hear the words spoken.  I know this sounds obvious, but I went through 2  pediatricians at 2 offices, and a handful of ER doctors that didn’t listen to me.  The old addage “Mother knows best” exists for a reason.  That is our child.  We know then better than any other living person on the planet.  So if we say something is wrong, then something is wrong.  Instead, all those doctors heard “my baby won’t stop crying” and “she keeps puking” and “there’s blood in her stool” and “she’s got this horrible rash ” and they only heard “first-time mother and baby with a milk allergy or anal fissure.”  I went back to the same pediatrician for months before I moved to another one in the hopes that I could get answers for my little girl, but even there I failed to be heard.  I know that babies cry, all of us parents know that.  If you have a parent coming back over and over and over with the same issue, there are two possibilities:
    • 1. The child doesn’t really have anything serious going on, but the parent really is unnerved and needs some sort of support system to help him or her get their feet up under them before they lose their cool.  It doesn’t hurt to refer this child for further testing at a larger facility.  While there, the parent might be more reassured and be given access to better resources.  Having a parent that feels secure in being a parent is VITAL to the safety and health of all children.  You have the ability to create that.
    • 2.  The kid is sick.  Seriously sick.  With something you haven’t seen before, and won’t see again and that child needs to be tested further immediately.   I don’t care where you practice, you WILL have a child with cancer walk through your door at some point and you are the doctor standing between them and a diagnosis… and these kids don’t have the time for a delay. Sophie was born in a TINY town in North Carolina, and her cancer occurs in 1/200,000 children.  Her presentation of the cancer occurs in 2% of those children diagnosed with LCH  (Liver and GI tract ).   That’s REALLY rare.  I guarantee her pediatrician had NEVER seen anything like Sophie before.  But if she’d biopsied Sophie’s recurring rash at 1 month old, her liver would have been spared the damage.  Now, she’s 8 and will never be able to do contact sports, roller skating, biking unsupervised, take tylenol, or drink alcohol , and has fragile bones from 23 months of chemo. Not that the pediatrician is at fault, but think about it.  I was there 5 times in a month for that rash and it never responded to anything.  It was more than eczema.  If she had taken the extra step, instead of just trying to reassure me, my child’s life would be different.
  • If a parent keeps coming back with the same complaints, order tests to rule out other more rare things early.  If a parent asks for tests, schedule them.  Don’t talk the parent out of it or belittle their fear.  So many mothers have told me that their children’s illnesses were overlooked for months. Be respectful.  The second doctor actually told me that I suffered from “First-Time Mother Sydrome.”  The doctor diagnosed me… I called our current pediatrician, Sophie’s third pediatrician in 9 months, from the insulting pediatrician’s parking lot.  Our current pediatrician saw us the next day.  She palpated Sophie’s stomach and found an enlarged liver.  She referred us for further tests that afternoon.  Sophie had cancer.  In her liver, spleen, GI tract, and pituitary gland.  Cancer.
  • Colic DOES NOT EXIST.  If a baby is crying, there is a reason.  Take it from the mother of three.  I’ve had a baby with a milk allergy.  I’ve had a baby with acid reflux.  And I’ve had a baby with cancer.  All three were diagnosed with colic initially.  Once we figured out the actual problem for the milk allergy and reflux, the colic magically disappeared with treatment and diet change.  So if a mother says her baby won’t stop crying, there is legitimate diagnose-able medical problem and you are the key to identifying it.
  • When you have a patient that is diagnosed with something big, follow up with the child’s care.  As that child’s primary care physician, you need to know the child’s diagnoses  in order to effectively treat that child later.  Call the receiving specialist and schedule a time to talk about that child.  Make yourself a part of the team of physicians treating the child. I gotta shout out to our current pediatrician who did this.  I love her.
  • Don’t hold back the truth.  We need to know what’s coming in order to prepare for it.  We need to now how to care for our child.  We need to know what she’s facing long term.  And we can handle it.  We are Chemo moms and dads.  That makes Captain America look wimpy.  Don’t sugarcoat it.
  • If we ask for more information, statistics, studies, anything like that, please give it to us. Some of us NEED that information to get through.  We have to have something inform us to help us make the right decisions.  We aren’t trying to replace you.  We aren’t going to tell you what to do outside of making medical decisions you ask us to make. We might even be helpful and catch something you didn’t see… like we caught the cancer before anyone else saw it.
  • Please help us find some sort of support group.  Parents won’t think to do this while fighting, but they need to talk to other parents going through the same thing.  While doctors have the clinical answers, other parents will have information regarding day to day life and tricks on handling the side effects of the drugs.  And they understand the way no one will.  All it takes a google search by you, a website written on a post-it, and you would be giving support the parents need to be adequate patient advocates for the child.
  • If we have other children, please put up with our irrational terror when the other children are sick.  We’ve been through a trauma dramatic enough to leave 18-20% of us with diagnosable PTSD.  Once we spend months being told a headache or rash or bruises or poor hearing is nothing, and then we find out it’s life threatening and we watch our babies suffer, every rash, headache, ear ache, bruise, or other thing on ANY of our children will illicit panic.  Be patient.  Be understanding.  Be compassionate.  You are a physician for children, so you must be a compassionate and caring person.  Please share that with us parents too.

I know after years of hearing the same complaints over and over, it can all seem like the same silly, easy to cure diseases.  It’s a cold.  It’s a skinned knee.  Moving on…  But sometimes, that rash is more.  Much, much more.  But please take this list as friendly recommendations from someone who admires what you do and appreciates all your hard work.  Thank you, again, for everything.

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One thought on “Open Letter to Pediatric Physicians

  1. From a mum of a LCH 3-years boy. I did go to another doctor for my eldest Son only because he was not listening…and I was right about his allergies. Because of that choice, I met the lovely other pediatrician who did admit me for his little brother the very day I called about his swollen face. And she immediately called a colleague a the hospital who did run other test that the one my pediatrician initially asked for….2 surgeries later: multifocal bones lesions, 9-month chemo. So yes, listen to your guts because if could help your other kids as well…

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