St. Mary’s County Mother Turns Tragedy Into Advocacy Through Book And Podcast

LEONARDTOWN, Md. — Ashley O’Neil, a local mother and new author from St. Mary’s County, has turned her experiences of loss, resilience, and hope into a mission to support families navigating the complexities of the neonatal intensive care unit (NICU). After facing the premature birth of her son, the loss of her first child, and the sudden passing of her husband, O’Neil has dedicated herself to raising awareness, providing resources, and offering encouragement to families of medically complex children.

Her book, “It’s a NICU World,” is based on her son Kolin’s NICU journey, told from his perspective. O’Neil also launched the “Ask a NICU Mama” podcast, where she shares the stories of NICU parents, doctors, and nurses while discussing the challenges of raising a child with medical needs.

A Journey of Loss and Strength
O’Neil’s story began with a difficult pregnancy in 2016. She and her late husband moved to St. Mary’s County in 2013, where he worked at the local military base, and she was a nurse at MedStar St. Mary’s Hospital. Due to polycystic ovarian syndrome, O’Neil underwent intrauterine insemination (IUI) to conceive.

Her first pregnancy took a devastating turn at 21 weeks when she experienced premature labor. “I arrived at the other hospital at 3 a.m., and they told me 50% of women who have their water break will deliver within 24 hours,” she recalled. “Three hours later, I delivered my son. He was born with a beating heart, but he lived for only seconds.”

O’Neil and her husband left the hospital just six hours after delivery. “I just remember being rolled out of the hospital, hearing all the other babies crying in labor and delivery, and realizing I was going home without a baby.”

Several years later, O’Neil became pregnant again and faced another preterm labor scare at MedStar St. Mary’s Hospital. Her son Kolin was born at 25 weeks, weighing only 1.5 pounds. He was manually ventilated for an hour before being flown to Georgetown University Hospital, where he spent 183 days in the NICU.

Doctors warned O’Neil that Kolin had severe bilateral brain bleeds and hydrocephalus. “They told me he would likely be severely handicapped—he probably wouldn’t walk, talk, eat, see, or breathe on his own,” she said. “I told him, ‘If you want to go, you can go, but I’ll fight with you for as long as you want to fight.’”

Kolin underwent multiple surgeries, including the placement of a shunt to drain excess cerebrospinal fluid from his brain. Against the odds, he continued to grow stronger.

Turning Pain Into Purpose
Life at home with a medically complex child presented new challenges. O’Neil and her husband struggled to find home healthcare support, eventually learning about Maryland’s Model Waiver Program, which provides Medicaid as a supplemental insurance for children with significant medical needs.

“Those are the things hospitals don’t tell you,” O’Neil said. “I never would have known about that program if it weren’t for another local family who guided us.”

When Kolin was 13 months old, tragedy struck again. “I went to work, and when I came home, my husband had passed away.”

The unexpected loss, combined with the challenges of raising a child with complex medical needs, led O’Neil to take time off from work. Eventually, she left her career as a nurse practitioner to focus on supporting other NICU families.

She launched the “Ask a NICU Mama” podcast to share the unspoken struggles of families navigating the NICU and the medical system. “I interview NICU moms and dads, authors, and doctors,” she said. “I want to give families hope that even on their darkest days, there’s always a glimmer of light—you just have to look for it.”

A Book to Inspire Hope
After Kolin came home from the NICU, O’Neil had the idea to write a children’s book from his perspective. “I took a piece of computer paper, folded it up like a book, and wrote the whole thing out in one sitting,” she said. “At the time, I didn’t have time to do anything with it, and then my husband died. But the idea never left me.”

She eventually worked with Little Readers, a self-publishing company, to bring “It’s a NICU World” to life. “They helped me pair with an illustrator and guided me through the process,” she said. The book is available in hardcover on her website and in paperback on Amazon.

Spreading Awareness and Building Community
In addition to her book and podcast, O’Neil is an advocate for the March of Dimes and other organizations supporting NICU families. She and Kolin were recently featured as a March of Dimes Mission Family and appeared on the cover of the organization’s annual report card.

Through it all, O’Neil remains focused on building a support network for families in similar situations. “When you’re going through something hard, your instinct is to isolate yourself,” she said. “But the biggest help comes from finding people to walk beside you—sometimes they’re strangers, sometimes they’re online friends. These people become your community.”

Despite the challenges, Kolin continues to thrive. Now in kindergarten, he rides the bus and communicates using a device. “My goal is for him to be happy and healthy and to reach his own milestones,” O’Neil said.

Her message to others facing similar struggles is simple: “I know how it feels to watch your baby die. I know how it feels to watch your baby fight to live. And I know how it feels to lose a spouse… I just want to inspire people who feel like the world is dark and gray, and they’re just trying to figure out how they’re going to survive.”

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