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 (low muscle tone), affecting everything from breathing to movement. It took weeks for her to open her eyes. She was connected to both a feeding tube and a breathing tube, but in those moments when we could hold her, we poured every ounce of love into her.

It was heartbreaking to know that we had such a beautiful little girl who might not be able to stay with us. We watched her grow, gain some strength, and even start to move a little, but her body continued to struggle. She couldn’t keep her airway clear enough to breathe on her own. Little by little, our hope faded.

A muscle biopsy finally provided an answer: Noa had a rare neuromuscular and nerve disease, likely degenerative. We were already seeing signs of decline in her breathing and digestion. She was often uncomfortable, and while her condition prevented her from making sounds, her angry red face told us she was in distress more often than not. There was nothing left for us to do but love her through it.

On a Tuesday afternoon, with the sun streaming through her hospital window, Noa passed away in my arms.

We were surrounded by nurses, family, and love. One of the most treasured gifts we received during this time was from Now I Lay Me Down to Sleep. After months in the NICU, we finally had a family photo without tubes or machines — just Noa in our arms. Those images are a priceless reminder of our time together.

We are forever grateful to the two nurses trained by NILMDTS who were there with us and took our photos, and to the Digital Retouch Artist who lovingly edited them so quickly that we could display them at Noa’s memorial service.

Their compassion and care will never be forgotten, just like our sweet Noa.

Learn more about the Medical Affiliate Program at nowilaymedowntosleep.org/medical

Now I Lay Me Down to Sleep, a dedicated 501(c)(3) non-profit, offers families experiencing pregnancy and infant loss with complimentary remembrance portraits, capturing precious moments with their babies. Your generous donation can help us extend this heartfelt service to more families in need. Please consider supporting us here.