As a parent of a child with hemolytic disease of the fetus and newborn (HDFN), one of the most challenging aspects was navigating the invisible nature of her condition. To the outside world, my daughter appeared physically healthy. Her cheeks were rosy, her eyes bright; nothing about her outward appearance signaled that anything was wrong.
HDFN affects red blood cells, leading to anemia, and can compromise the immune system due to lower white blood cell counts. Essentially, while she looked fine on the outside, her body was fighting a battle every day—one that left her highly vulnerable to illness and infection.
Read more about HDFN testing and diagnosis
Because of this, when I brought up her rare disease, especially when people asked to meet her, I was often met with confusion, skepticism or even dismissal. It was difficult for others to understand the seriousness of her condition because there were no obvious, physical signs of illness.
One of the hardest parts of being her parent was having to advocate constantly for her health, often in uncomfortable social situations. I had to ask people not to come around if they were sick or had recently been exposed to illness, even if it was just a cold or what they assumed were seasonal allergies. I can’t count the number of times someone would show up coughing or sniffling and insist, “It’s just allergies,” even as I gently reminded them of how high the risk was to my newborn. What they saw as harmless could have potentially led to hospitalization or worse.
Trying to set boundaries in these situations was often met with resistance or misunderstanding. I found myself repeatedly explaining the severity of her condition, hoping people would understand. I started using a clear and direct phrase to communicate the importance of their choices: “If you love her and want her to stay alive and healthy, it is best that you leave and meet her another time.” These were not words I said lightly. They came from a place of desperation, from a parent doing everything in their power to protect their child.
Unfortunately, not everyone responded with empathy. Some took offense, others distanced themselves and many relationships became strained. It was painful, but ultimately, my daughter’s health had to come first. I quickly learned that boundaries are not always welcomed, even when they are necessary. And that advocating for a child with an invisible illness often means standing firm in the face of discomfort or social fallout.
Raising a child with a rare disease has taught me resilience, the importance of education and the value of clear communication. It has also shown me who truly respects and values my child’s well-being. While the road is not always easy, I will never stop advocating for her safety and health–even if that means having difficult conversations or walking away from those who don’t understand.
Sign up here to get the latest news, perspectives, and information about HDFN sent directly to your inbox. Registration is free and only takes a minute.
