Dear Doctors: Please Don’t Call Our Daughter One of 'Those Kids'

Nearly a year ago, my husband and I were the happiest expecting parents ever. We were taking pictures of my huge baby belly shortly before contractions started and we had to head to the hospital. When I look at these pictures, I remember exactly how I felt, and I know that the smile on my face was from the very bottom of my heart. We were blissfully unaware that our lives were about to be turned upside-down.

Sanaa, her husband, and daughter Mia pose with a bouquet of flowers.
Sanaa, her husband, and daughter Mia

Our baby girl was born with an extremely rare syndrome affecting her eyes, heart and skeleton. Since her birth we’ve lived in hospitals, spent endless hours in specialists’ waiting rooms, and learned more medical jargon than we’ve ever thought we would.

We are extremely grateful to the health care professionals involved in our daughter’s care. Our baby was born blind and surgeons made her little eyes shine. They allowed our little girl to see the world, and for that we’ll be eternally grateful. We are also grateful to the kind nurses who took care of her, and sometimes us, after each surgery. We are also grateful to the amazing therapists who are going with us along the way and allowing our baby girl to develop amazingly well despite hospital stays and endless treatments.

Nevertheless, there’s one thing I’d like the health care professionals to know: Please be mindful of the words you use. Your words have a bigger impact than you know.

I recently left a specialist’s office feeling sad. It was a routine checkup, and I had no reason to feel the way I felt. I had to question my own feelings to realize that it was because of the words he used to talk about my baby. He explained that “these kids often have poor appetite.” I felt a sudden urge to come back to his office just to ask him: Which kids were you referring to? Did you mean the cute baby girls? Did you mean the adorable and affectionate 1-year-olds?”

The truth is that it wasn’t the first time my baby has been referred to as one of “these kids,” and it hurts every single time. It hurts because I feel it’s stigmatizing and because it defines my baby girl by what she has. The syndrome is what my baby has, not who she is. We are fighting every single day so that the syndrome she was born with doesn’t have a negative impact on her life, and doesn’t define who she’ll grow up to be.

My baby girl is barely a year old. She’s spent way too much time in hospitals. She’s had a few major surgeries and there’s more to come. But you know what? Our daughter is just the precious little baby girl we were waiting for when we were taking these pictures shortly before her birth. She’s our sunshine, and she’s everything we dreamed she would be: a loving, joyful, curious and bright little one. She gave us the same joys her older brother gave us in his first year of life. She blessed us with her first smile and first giggle. Like other parents, we watch our videos of her over and over again: the first time she crawled through the living room, the first time she stood up…but the video we watch the most is the one where at 2 months old she opened her eyes following surgery and saw the world for the first time. Words can’t describe how we feel when we watch this video.

We are not the parents of one of “those kids” with a unbelievably rare syndrome no one has ever heard about. We are the parents of amazing little fighter Mia G.

To the health care professionals: It took us more courage than we knew we had to rise up to the challenges of raising a child with a serious medical condition. Please make sure we don’t need to find more courage just to overcome your words.

The Mighty is asking the following: Describe a moment when you were at a hospital and a medical staffer, fellow patient or a stranger made a negative or surprising comment that caught you off guard. How did you respond to it? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

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