Why Medical Professionals Aren't Always Right About What Is Best for My Son

My medically complex 1-year-old gets occasional infections due to his condition. When he gets these infections, he does not eat or drink anything besides breastmilk. I’ve always been told it’s fine this is all he eats because he is only 1 and breastmilk is complete, wholesome nutrition that he so desperately needs even more when he’s unwell and becoming dehydrated.

We’ve never had a problem with this until a nurse at my son’s primary care physician’s office took it upon herself to tell me “maybe it’s time to start forcing him” to eat solids after another hospitalization and him being very sick with several respiratory illnesses. I was completely flabbergasted at such ridiculous suggestions. I asked her, “How does one force feed a young toddler? Or anyone for that matter? I can’t shove food down his throat!” The only response I got was to make sure I was offering him solid food as well. I was, but I was not going to refuse him breastmilk if he did not eat the food that was offered.

I’ve never been so angry with any medical professional the way that I was angry with this nurse. Why would she give such dangerous advice? And to a medically complex child, at that! I also wondered what made her think taking away the only thing he was getting any sort of nutrients from would be a good idea.

I do feel a lot of the nurses we see at his doctor’s office (and sometimes even his doctor) forget he is not a “typical” child. If I took away his breastmilk to try and force him to eat solids every time he had an infection or other illness, he would end up being admitted every single time because he would become lethargic and dehydrated!

Care providers need to be a little more careful about their suggestions to their patients. They need to try to put themselves in the parents’ shoes and imagine what parenting a medically complex child is like. They need to try to see our side. They also need to understand that we, as the parents, know our child way better than they ever will. We are the ones with our children every day. We are the ones taking care of them when they’re sick. We know what works best for our kids and what doesn’t better than any of their doctors or nurses.

Taking away the only thing a child will eat or drink is not the correct way to get them to eat other foods, or any foods, in my son’s case.

This is one reason why it is so important to know that you are your child’s biggest advocate and to always fight for what you know is best for your child.

Image Credits: Randi Wright

Find this story helpful? Share it with someone you care about.

Related to Rare Disease

12 Memes That Nail What It's Like to Be 'Rare'

When you’re diagnosed with a rare disease, or let’s face it, diseases (because so many of us don’t just get one), you usually spend much of your time trying to make sense of it and do research to learn how to best manage your health. What’s even harder is trying to make others understand what [...]
Regeneron Science Talent Search 2018 -- isani smiling with a medal

Why Rare Disease Research Matters

Every year, there are so many different projects at fairs surrounding “high-profile” diseases, such as various types of cancer, Alzheimer’s, Parkinson’s, and Huntington’s. It’s incredible that the students completing these projects are dedicating their time towards research that may one day limit the suffering of these patient populations, but there are so many other disorders [...]

The Powerful Change I Made When Responding to 'How Are You'

Deep inside, I know I am not the cluster of symptoms that seems determined to define me. I realized somewhere along the line with my rare disease that I was beginning to become nothing more than my latest set of symptoms. My life began to have no meaning because all I seemed to do was [...]
Teacher At Montessori School Reading To Children At Story Time

Why My Son's Class Deserves a Preschool Graduation

To whom it may concern, Today I was informed that my son’s preschool class will not be having a graduation ceremony. I cannot tell you how heartbreaking and disappointed this makes me. I am aware his class is very small, but these children still deserve to be celebrated. I want to share with you what [...]