Maryland March for Change

ashleyoneil3
20 hours ago
2 min read

Yesterday, I stood alongside 57 other advocates at the inaugural Maryland March for Change.

It was my first time serving as a group leader and I was nervous.

My small group of four met with five delegates and/or their staffers. We shared our stories. We explained why this work matters — not just to us, but to our communities.

I told them about giving birth to my eldest son at 21 weeks and having to watch him die.

I told them about delivering my second son at 25 weeks at a small community hospital that did not have the resources to care for a 650-gram baby.

I told them about 183 days we spent in the NICU. Days filled with alarms, uncertainty, fear, and fragile hope. And how nearly seven years later, we are still navigating the lifelong complications that come with being born at 25 weeks.

I shared my belief that both pregnancies may have had different outcomes had I presented to a hospital equipped to care for high-risk mothers and micro-preemies.

And today? Today I am sitting in a hospital room with my son, waiting to be transferred to a higher-acuity hospital.

Kolin has bronchopulmonary dysplasia. And a “little virus” is never little to us.

Last week, I served as a panelist at the FDA’s ADEPT 10: Addressing Challenges in Neonatal Product Development – Leveraging Rare Disease Frameworks public workshop.

This week, I was in legislative offices sharing my story.

And today, I’m a medical mama sitting by her son’s hospital bed.

I push myself out of my comfort zone to advocate for:

• Medicaid protection

• Drug innovation for neonates

• A women’s hospital in Southern Maryland

• A Maternal Health Monitoring Pilot

And so much more because I know what it feels like to deliver a baby in a system that was not built for high-risk mothers.

I know what it feels like to raise a child with complex medical needs in a world that was never designed for them.

Advocacy is uncomfortable.

It is vulnerable.

It is exhausting.