Lessons from the NICU: Advocating When Something Isn’t Right

One of the most profound lessons I learned during my daughter Charli’s four-month stay in the NICU was the importance of advocating when something didn’t feel right. As parents, my partner and I spent countless hours at her bedside, listening attentively as treatment providers conducted rounds and discussed her care. Initially, the experience was intimidating. We found ourselves surrounded by doctors, residents, nurses, and specialists, all speaking fluently in the language of medical jargon that seemed foreign and overwhelming to us.

Over time, familiarity with the team and a growing understanding of the terminology helped me feel more confident about speaking up. I began to realize that, as her mother, I had to be Charli’s voice when she couldn’t speak for herself. What struck me most was the realization that even at just a few weeks old, Charli was already communicating her needs through her body language and responses. My role was to listen to her and advocate for those needs—not to impose my own fears or assumptions, but to bridge what she was expressing to her medical team.

This insight is one that echoes in my professional life as a therapeutic placement specialist, where I have spent over 20 years supporting adolescents and their families through challenging transitions. I often encounter situations where parents’ needs and concerns become intertwined with their child’s, making it difficult to separate the two. Just as I learned to tune into Charli’s needs and distinguish them from my own, I frequently guide parents to differentiate between their own wants and their child’s genuine needs.

Advocating effectively requires listening—not just to what professionals are saying, but to what the child is communicating, even in subtle ways. It’s a balance between understanding expert input, trusting your instincts as a parent, and maintaining focus on what is truly in the best interest of the child. This lesson, sharpened through my NICU experience, is a powerful reminder that being a strong advocate means stepping outside of our own emotions to ensure that the voice we raise truly represents the needs of the one we care for most.

This first part of the "Lessons from the NICU" series sheds light on the courage and clarity required to advocate for your child in medical and professional settings. It’s a skill that grows with time, trust, and the deep understanding that advocating is not just speaking up—it’s speaking up for the right reasons.

More lessons from the NICU will be coming out monthly so be sure to check back for more.