An open letter to our former pediatrician.

Heather D. Nelson | 4/8/2013, 1:04 p.m.
So for those who know me, my foray into the diabetes one was a long-winded drag into the ER after ...
Heather D. Nelson

So for those who know me, my foray into the diabetes one was a long-winded drag into the ER after multiple appointments with our pediatrician before finally pushing hard enough to be heard. Needless to say my anger, initially, was well channeled towards that pediatrician who long heard my concerns and routinely dismissed them. But upon meeting other people in the Type 1 diabetes world I’ve come to learn – it’s not all that uncommon. In fact, in almost EVERY medical field you’ll come across some story that some doctor dismissed the patient’s questions or concerns and in fact, the patient was right. Doctors are people too...people are human….people err and make mistakes. Doctors are not God, All Knowing and Ever Present, and these days navigating the world of medical lawsuits can leave any doctor often second guessing the paranoid-patient’s concerns. However, there is a line….a line whereby the doctor has to begin to realize this patient – no matter how crazy you THINK they are – needs desperately to be heard. So to that end, to maybe help other mommies out there with babies that they think aren’t getting the care they need, I give you….

An open letter to our former pediatrician.

Dear Dr. Missed-It,

When I first came to you and your practice as a new mommy of a then 8 week old baby, you were a God-send. Encouraging and kind to the new mommy and very supportive of all my new mommy fears and worries. You often balanced my own worries with reason and a calm nature and reassured me at every turn that things were fine. I loved how I would leave your office feeling good as a parent with a healthy bundle of energetic baby boy. I highly recommended you to people I would meet, as you in turn had been highly recommended to me. At some point, you went from being calm and level headed and rational – to dismissive and almost belittling. When I had the 1 year physical for my teeny baby, and I mentioned to you how his little hands would shake in the early morning hours before breakfast, you told me he was just excited to eat and that he was fine. When I brought him in for his 15 month check-up and re-visited the same concern only now adding that his behavior would be horrendous if I didn’t GREET him at the bedside with a sippy of milk each morning, you again said he was fine and likely just getting very hungry and learning to express himself. At 18 months, and every sick visit in between, when I would continue to bring up the concerns of his behavior and the midnight screaming attacks where he was incoherent, and the shaking hands, and all the things combined….you continued to tell me it was his age, the onset of the “terrible two’s” and that he was fine.

Up until this point I could forgive almost anything as I likely WAS a bit paranoid. He was growing, not ill, developing well and otherwise “fine”. I can see how you may have looked at me and thought I was just inexperienced at the toddler tantrums. But after the birth of my twins, when I had my husband take off work and brought my son to you fasting in the early morning hours and asked you to check his blood sugar – you should have stood up and paid attention. You see THIS is where my line is drawn that you began to truly miss the mark. I packed up twin 10 week old babies…I had my husband miss work…I packed up an extra-large bag of formula and diapers and sippys and snacks in the preparation for a long day at the hospital and I told you I was convinced something was wrong with my child. You - summarily – dismissed me. You checked his fasting blood sugar which was ‘low but not alarmingly so’ and told me that his behavior was just the terrible twos. Night terrors. Perhaps a touch of low blood sugar. Nothing to be done, and nothing to worry about. You encouraged tighter discipline, more snacks, and for me to step out and take a deep breathe if the night time attacks got too hard for me. On behalf of mother’s everywhere let me say – you blew it. BIG TIME! I had been a long time client with your practice and you had, by then, been caring for my son for nearly 2 years. YOU. Not your team or your partners or a nurse practitioner, YOU. And you then had my twin sons under your care too. I know you had a large practice to care for but if my son’s history hadn’t added up to anything to amount to concern to you, MY CONCERN should have.

As a pediatrician, only HALF of your job is to medically treat and care for my son. The other HALF of your job is to listen to me. Remember me…THE MOTHER. I am the one with my children 24/7. I am loving them, feeding them, caring for them, and otherwise making sure that their health and well-being is at the most pristine that it can be. Even if at the very core of your soul you believed my child was fine, then you should have run one more test – something – ANYTHING – to put my mind at ease. A simple lab draw…or a urine test…or a 24 hour collection or anything. If the test came back negative then it would have boosted my confidence in you and put my mind at ease and made me more focused on your other advice. But in fact, you didn’t. You again sent us home. It wasn’t until nearly 6 months later that at the advice of a multitude of friends and ANOTHER pediatrician (who I shall name Dr. Sainted-Sent-From-Heaven) that I came in on a Sunday and I pushed you.

Again, I packed up my now 7 month old twins, we skipped church, we brought extra bags of food and snacks and bottles and diapers and my husband and I brought our child to you hoping that our insistence and your history of the patient would combine into a plan of action. As before, you took a fasting blood sugar and it was “low but not abnormally so” and you tried to send me home. I fought you and said no. I pushed and basically ordered you to run ANY other test. I believe the words, “I’m sick to death of worrying about this and I’m not leaving until we put this to rest” actually came out of my mouth. So you decided you could send us home with a urine bag – which I swiftly denied and said NO. I told you we’d wait until my son filled the bag RIGHT HERE and you could test it on the spot. So we fed our son a sippy of milk and a cheese stick and waited. He finally pee’d and your nurse promptly took the sample away. Within minutes she returned asking to check his sugar again – and my heart sank.

I knew.

I knew all those months….I knew something was wrong. I knew, DAMMIT I KNEW, and you dismissed me. You made me doubt, you made me push my worries aside. You actually had me thinking my kid had a behavioral problem or a sleep disorder. The new blood sugar was over 240. And again, AGAIN, you tried to send us home….and no – I am not kidding you here…you actually said there was nothing the ER would do for us on a Sunday. I had to push, even further, and take my son to the ER. By the time we arrived his sugar was over 400 and my son was a crazed maniac of sugar-induced rage. We were instantly admitted for a series of days that came by in a blur.

To my Dear Dr. Missed-It….don’t ever do this again. Don’t EVER dismiss a mother’s concerns when she comes in so armed with history and facts and data and concern. Run a test, take her seriously. If she is right then you fulfilled the half of your job that cares for her child….if she was wrong than you fulfilled the part of your job that cares for the parent. You are an incredible doctor and even now, looking back, I can understand why you did what you did → at first. But somewhere along the way, you got lost and you missed it. Missed it by THAT much and it was just enough to put my son in real jeopardy and lose me and my family as patients forevermore.

And to my Dear, Sweet, Ever-Patient Dr. Sainted-Sent-From-Heaven.

God Bless your hands and your heart and your talent. You listened to me pour my heart out for over an hour…on a Saturday….when your new clinic was not even OPEN and you just happened to answer the phone while you painted the walls. Your heart went out to me and you encouraged me to fight. Had you not answered my call, who knows how much sicker my child would have gotten. You supported me so much, and you immediately took on me and my three sons as new patients – and Lord knows we kept you busy! You helped me so much in those early weeks and months of navigating all the new things I had to learn about Diabetes, and you truly lived up to the model that I now hold all pediatricians to. Other pediatricians could sit at your feet and take a few notes that sometimes the best medicine for a sick baby – is for the mother to have an extra set of hands to comfort a sick baby, and to be given a Kleenex to wipe away her own tears for a minute….to breathe…and regain her footing.

We’ve since moved to the great state of Texas and have another FABULOUS team of doctor’s caring for my children now.. A fabulous new Pediatrician who sees me and my three boys regularly. Fabulous pediatric dentists and endocrinologists and ophthalmologists and a lot of other “ists”. And now my criteria rides first on credentials, and SECOND on staff commentary and referral knowledge about bedside manner.

To all the Dr. Missed-It’s in the world – work harder – do better – be better.

To all the Dr. Sainted-Sent-From-Heaven’s in the world – God Bless your talents and don’t ever think your long hours and exhausting days are for nothing. The next patient you see could be me and I may be the one who’s life is about to change and you will hold ALL our hands as we go thru it.

Sincerely – one WICKED fierce Mama Bear

Heather D. Nelson – Author

God Had Other Plans – Keeping Faith thru Infertility and Pregnancy Loss

Follow her on Facebook at