Written by Ahmaari’s mother, Necole McRae

This is the story of how NEC has impacted my life and my daughter’s life. I hope as you read this, you know that you are not alone, and there are families that put prayers up for you without you even realizing it. 

My daughter Ahmaari was delivered at 25 weeks, weighing 1 lb 14 oz, and given less than a 30% chance of survival. For weeks, I whispered different nicknames in her ear in hopes that through all the medical issues, at least she’d open her eyes. She offered an occasional smile and stretched out her arms, but opening her eyes was the one thing she wasn’t ready to give. It took that kid 4 weeks before she actually looked at me. And when she did, it was like the heavens opened up. She only did this during our kangaroo care, after she was nestled in and heard her nickname called in a sing-songy way. Then she’d open them once more when I placed her back in her isolette at the end of the night, as if to say, “Where do you think you’re going?”

I was told she’d have good days and bad ones. For 3 months, she had only the former. By 10am every day, I was settled in the rocking chair beside her isolette, “my heart” resting within the sports bra I wore to give her enough room to squirm.  By this point, the nurses started calling her “the escape artist”.  She was usually one of the first to wake up and wiggle out of the swaddle, and she was the only baby in her unit who kicked open the isolette door to attempt an escape!

By the fourth month, she was almost ready to come home–she just had to keep growing and hitting her milestones. I finally started to breathe a bit and looked forward to the slivers of hope she offered twice a day.

Five months in, something felt inexplicably off. I continued my routine, sang her name. Ahmaari. No movement. I repeatedly kissed her forehead. She wouldn’t open her eyes. Her sats and heart rate were low.

Good days and bad days.

Upon pleading for her careteam to take a closer look, I was dismissed and ignored three times by three different doctors. I knew as a lower-class woman of color, when it came to being taken seriously, the deck was already stacked against me. But they were supposed to be on our team. I was told to calm down, that “she’s just having one of those set back days.”

Invalidation led to the same deep feeling of hopelessness that had flashed through me when I’d heard “less than 30% chance of survival” after 5 days of labor. I don’t hate, but the depth of that despair…I hate that.

Three hours later when she was placed back on cpap, I started losing it. I pleaded with the doctors once more and was rejected again.

Hope came with the shift change. A nurse I’d bonded with over our grandmothers’ recipes entered the unit, and I relayed what had happened that day to her. When she saw my tears, I think her mother’s intuition kicked in. Whatever it was that made her believe me, I thank God for it.

The nurse looked me squarely in the eyes and said, “I’ll make you a deal. You go back to the Ronald McDonald house and detox from the hospital for a little bit, and I promise you, I’ll get Ahmaari into x-ray, even if I have to sneak her in. If something comes back as abnormal, I’ll give you a call and you come back. But if the tests come back clear, you have to stay there for at least 4 hours. Deal?”

While I felt like it was an offer I couldn’t refuse, in the back of my mind, I thought this may have been a ploy to get the “crazy mom” out of the hospital. But this woman was willing to risk her job to sneak my kid in. Without missing a beat, she smiled, “Baby, what are they going to do to me? I’ve been here in the NICU for 22 years. I’ve seen the first babies I helped deliver graduate from college. I’ve seen a few of them get their wings. I train the new nurses. I’m valuable. I can take the write-up, oh well. Let’s see what’s going on with your baby! I get her in, you get some rest. Deal?”

Immediately, I jumped up and gave her a tight hug before packing up my things. As soon as I set foot outside the hospital, I started a timer. Four hours. That was the deal. 45 minutes passed before I got a call from the nurse telling me to hurry back to the hospital before they took my daughter into surgery. They had found something. 

My mind was reeling: What did they find? How bad was it? Why the heck did she need surgery? When I entered my daughter’s room, all 3 doctors were standing around her isolette with looks of indignation. They did not apologize. Instead, they stoically told me my child had NEC. They said thankfully, it was caught before too much intestinal damage had occurred. However, her pancreas and liver enzyme levels were concerning.

Time began to slow as they spoke. I could see the nursing and surgical staff prepping her for relocation. The chaplain on my right side was waiting to speak to me. Parents of the children on the other side of the room stared in horror, knowing another child may not come back. The doctors seemed to be saying something important, but all I could hear was the sound of silence. It’s a piercing sound–loud, yet balanced and deafening.

Ahmaari had NEC. This was the worst possibility on the list of conditions the hospital parenting classes had given me. This was the one thing the nurses stressed about being able to catch quickly–sometimes, they weren’t successful.  This was the thing that took lives within hours; this was the thing I saw four babies leave the floor for and never come back. This was that sneaky, goose-bumps-in-the-night thing all of us in the unit were dreading, and my kid had it. 

I looked at all three of them and said, “Oh, so now there’s something wrong? Now it’s a rush, now you have time to pay attention? This could have been found earlier when I asked a total of six times for someone to look at her. Not one of you…nevermind.”

My words were pointless. If these were the last moments I was to spend with my baby, I didn’t want to waste my breath. I grabbed my daughter out of her isolette and let my tears fall on her while I told her to be brave, strong, and breathe. She didn’t make it this far to lose the fight now.

While she was in surgery, I kept replaying the day. What could I have done differently? What should I have asked for? Who else did I need to make allies with in case something else went wrong? How had I known something was wrong?

After her surgery, I was told there was more damage than they’d anticipated, but she wouldn’t need a colostomy bag.

And then there was the waiting, underscored by chords of deafening silence. All I could do was think about the eyes that never opened.

A few hours into recovery, one of her doctors pulled me aside and apologized for not hearing me. Not listening– “hearing.” Whether it was arrogance, tiredness, or incredulity that caused it, he knew what he’d done. Perplexed, he asked me how I’d known something was wrong.

I wanted to give this man a piece of my mind, but his apology took the hot air out of me. Now that I finally had the doctor’s ear, I decided to make the most of it and tell him the truth: all I knew was my daughter didn’t open her eyes. NICU parents are on high-alert anxiety 24 hours a day– the slightest deviation from our child’s norm is ominous.

There are plenty of things I wish I knew before Ahmaari developed NEC and just as many I wish I’d been told after  she came home. She had major gastrointestinal issues until she was 9 years old. There were foods she needed to avoid. I don’t know if or when she’ll ever outgrow her NEC complications. Ahmaari is now 11 years old, she’s had fewer digestive problems and is no longer on medications. She’s on a mission to meet other preemies and hear their stories, and I am here to support her every step of the way.

My daughter is a NEC survivor.