Leevi’s CDH Story
Leevi is our surprise miracle baby.
My husband always jokes that we “manifested” Leevi—because we spoke his name into existence five years ago. Before Leevi, we were a blended family of five living in Poquoson, Virginia. Our older two kids are now 20 and 16, and our youngest is 4. After complications during our 4-year-old's birth, and knowing we were entering our 40s, we felt that our family was complete.
That all changed in November 2024 when those pink lines appeared. Shock quickly turned into joy—and deep down, we just knew Leevi was a boy.
The beginning of the pregnancy was smooth and uneventful, giving us every reason to believe our little miracle was thriving. But at our 20-week anatomy scan, everything shifted. Doctors discovered an abnormality in Leevi’s chest—something that looked like a mass. We endured seven long weeks of testing, scans, and waiting for answers. Finally, we learned the diagnosis: left-sided Congenital Diaphragmatic Hernia (CDH).
Although considered mild, Leevi’s CDH had allowed his stomach, intestines, and spleen to migrate up into his chest, pushing his heart and lungs to the right. From 27 to 33 weeks, we attended weekly ultrasounds and biweekly non-stress tests to ensure his condition remained stable. We were surrounded by wonderful doctors in Virginia who guided us with honesty and compassion. They knew their limits—and they helped us create a plan that gave Leevi his best chance.
That plan led us to Johns Hopkins Hospital in Baltimore, Maryland—into the extraordinary hands of their CDH, Fetal Care, and NICU teams.
Leevi was born via C-section at 37 weeks on June 25, 2025. Just two days later, on June 27, he underwent his repair surgery. Our tiny warrior spent three weeks in the NICU, making steady progress and conquering every challenge placed before him—intubation, breathing machines, arterial lines, scalp IVs, central lines, PICC lines, NG tubes, countless medications, and endless X-rays. He fought through it all with strength far beyond his size.
On his original due date, July 16, 2025, we carried our boy out of Hopkins and home to Virginia—where he has been smothered in love, snuggles, and healing ever since.
Today, we travel to Kennedy Krieger Institute in Baltimore once a month for follow-ups with the CDH team and occupational therapy, ensuring his lungs grow strong and his repair stays secure. On October 25, Leevi turned four months old—and he continues to amaze us daily, hitting milestones and reminding us just how powerful miracles can be.
Our family thought we were complete—but Leevi proved that sometimes the most unexpected blessings become the most extraordinary stories.
