Noa’s Story

Getting pregnant with Noa was one of the easiest things my husband and I had ever done. Keeping her was a different story.

Our pregnancy was fairly typical, passing all the standard tests and milestones, although the nausea was brutal. At about 7 and a half months, everything changed. Noa suddenly stopped moving. We went to the emergency room, and the doctors reassured us that she was fine. Still, I knew something wasn’t right. I couldn’t feel her usual kicks on my right side. Two days later, at our routine monthly checkup, it was clear that Noa was in distress.

We were sent straight to the hospital. An ultrasound revealed that Noa was stuck in a position the doctor had never seen before — head down with her neck hyperextended backward. An emergency C-section was the only option.

At just 2 pounds 6.8 ounces, Noa entered the world needing resuscitation and immediate ventilation. Fifteen hours later, we were transferred from our local NICU to Johns Hopkins in Baltimore City because Noa still wasn’t moving. She never even cried.

The next three and a half months became a blur of daily NICU visits, endless tests, and consultations with specialists from every discipline. Time after time, we heard the same heartbreaking words: “We’ve never seen anything like this.”

Noa suffered from a rare combination of hypertonia (high muscle tone) and hypotonia …