To the Doctors Who May Not Remember How You Talked About This Baby

Dear NICU doctors,

You probably don’t remember me. The last time you saw me, I was hooked up to a ventilator, had a trach and was fed through a gastrostomy tube. I was a mere 5 pounds when I was transferred to the rehab hospital, and I was only allowed to wear clothes for just a few days before my departure. I had lots of salt and pepper hair and huge brown eyes that seemed to stare right into your soul. This picture might help you remember.

I’m Abby, and I’m a miracle.

I’d be willing to bet you don’t remember some of the conversations you had with my parents. After all, you have hundreds of tough conversations each year. But they remember. They remember how they were stopped in the hallway and callously asked what they wanted to do when I coded. After getting over the initial shock of that question, they begged the doctor to do whatever he could to save my life. My parents will never forget how that doctor responded with, “Really?” 

They remember the geneticist who diagnosed me. My mom can picture sitting in her hospital bed attempting to take notes of what the geneticist said as her world came crashing down around her. She can quote how the geneticist told them I would be “little more than a vegetable.” She remembers being told I would be trach- and vent-dependent for life, unable to hear, see, speak or walk. They will never forget the kindness of the chaplain who gave them so much support in those moments. 

They remember the tears they shed as they read the xeroxed page from the medical journal from the 1970s that the geneticist left with them. It was practically a death sentence as it described my syndrome. I could hear the anguish in my momma’s voice as she quietly prayed by my bedside. Often, she didn’t… couldn’t… say anything but, “Please let me have her. I’ll take her any way. Please just let me have her.” By the way she held my hand so tightly, I could tell she was willing me to fight. I tried so hard to tell her with my eyes that I was.

My mom certainly remembers how hard she had to fight to get my therapy started.  She knew the importance of early intervention and wanted to begin working on loosening up my tight hands and strengthening my oral motor skills. But yet, you resisted. You kept saying something about letting “nature take its course.” I finally began therapy, but I think it was mostly to get my mom to leave you alone. It didn’t work. She just moved on to something else!

She also remembers the kindness of the NICU fellow who believed in me. She was the one who got the second opinion about my diagnosis and helped us contact the researcher in Boston. She gave us the support my parents often felt they didn’t have from some of the other doctors. Do you know that we still keep in contact with her? That’s how big of an impact she had on my mom during that time.

Pretty soon, it became evident to everyone that I was here to stay. People commented all of the time on my strong will and sassy personality. I grew, got stronger and fought harder day by day. I remember that beautiful January day when I finally got to see my home for the first time. It was wonderful to finally be around my whole family at one time! There were a few close calls and one time when my momma really thought she was going to lose me. But still I fought. 

One by one, I crossed off my list of “Abby Will Nevers” as I did them. First I crawled, then I started taking food by mouth, then I stopped using the vent during the day. I got my first set of tubes in my ears, I walked, then I got rid of the vent altogether. I learned some words and signed even more. 

Just a few months after being weaned off the vent, I was decannulated, and I’ve never looked back. That was when my talking really took off. Two months ago, I got my feeding tube taken out. I now eat everything by mouth and am doing great!

 On October 22, I celebrated my 3rd birthday — trach-, vent- and gtube-free.  While I’ve worked hard for every milestone, I’m a happy, thriving, typically developing 3-year-old. 

Have I mentioned I’m still pretty sassy?!

Please, the next time you have a baby in the NICU who may seem like a lost cause, think of me. Give that baby every chance at life. Fight for that baby! Remember that baby is a person, not a patient. Listen to the parents who love that baby more than life itself. Pour yourself into helping that baby survive. Research, discuss the case with other doctors and make phone calls. And celebrate every milestone that baby makes, knowing that you helped make it happen. 

Most importantly, don’t underestimate the power of our God. I believe He is greater than any illness. I believe He is greater than anything.

Wishing you faith, hope, love and joy,

Abby Joy

Follow this journey on Life as a Leach.

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