The Mighty Logo

If Your Child's Pediatrician Dismisses Your Concerns, Trust Your Gut

The most helpful emails in health
Browse our free newsletters

A picture is worth 1,000 words, or so they say. My daughter Lily was born 14 months ago. She’s had a wild ride so far, but you wouldn’t know that by looking at her, would you?

She is the picture of strength.

Perseverance.

And she has two parents who would do anything to ensure their little girl stays healthy.

A few weeks after Lily was born I woke up during the middle of the night to hear her coughing, and sounding like she was really struggling to breathe. I propped her up, and she seemed to go back to normal soon after. This happened several times, and each time I would bring her to her then pediatrician just to be told all was fine, and I was probably going through postpartum depression.

Then one day we were visiting my mom, and my then 2-month-old baby seized up. We rushed her to the emergency room, where she was admitted overnight for testing. At that point they couldn’t see anything that was wrong. And after a follow up with her pediatrician, I was again told that she was fine and all babies do that stuff and I just needed to relax.

A week later I was snuggling my baby up before bed and she lost complete control of her bowels and started vomiting profusely. We went straight to the Children’s Hospital this time and Lily was admitted for several days and had lots of different tests done, meds and fluids given. It was at this time that Lily started spitting up large amounts after each feeding. We would have to change her outfit after each bottle because it would soak through her bib and outfit.

Lily got sent home with some new tool to assist with feeding times. Within the week of being home from that hospital stay she took a turn for the worse, and was losing some significant weight. I brought her to her pediatrician and after once again being told I was over reacting and all babies have reflux, I made her an appointment with a new pediatrician at a new clinic. It was then that we were told that this was in fact not normal, and very concerning.

When we left that visit she had an appointment set up with gastroenterologist, a swallow study, and a cardiologist. After a surgery for a biopsy and a swallow study, we found out that she had a dairy allergy and was actually aspirating with each feeding which is obviously extremely dangerous.

Lily was put on a new formula that had to be thickened to the point that it was consistent with the texture of honey. She has had several follow up swallow studies with no change in the findings, but she is thriving. She’ll have to continue with thickened liquids, and that’s everything she drinks i.e. milk, water, and juice has to have thickeners in it to prevent her from fully aspirating.

The author's baby sitting on a rock, with a purple bow in her hair

Since finding a doctor who listens, Lily went from the 10th percentile in weight all the way to the 63rd percentile. She went from being weak and sick to being ahead of schedule.

Parents always listen to your intuition, it’s there for a reason. We see our children the most, and know them better than anyone. It’s OK to get second, third and even fourth opinions. Trust your gut. 

After all trusting ours got us to where we are today. A beautiful little girl who has overcome mountains of obstacles, and that’s why this picture is worth so much to us.

Originally published: October 9, 2020
Want more of The Mighty?
You can find even more stories on our Home page. There, you’ll also find thoughts and questions by our community.
Take Me Home