My granddaughter was born with a cleft lip and palate. I fired the pediatrician who told me she would die.

• She was born with cleft lip and palate.

• Kim was told by a doctor that she would die because she couldn't eat.

• This is the story of the man.

The as-told-to essay is based on a conversation. It has been edited to make it clearer.

She came back to my house when she was a baby. The challenge of caring for a baby with cleft lip and palate was something my son and his mother were aware of.

I have been her primary care giver from the start. I was taught how to feed her with bottles that had an extended nipple. We were lucky that half of the formula she ate made it into her baby's stomach.

It was one day that my husband called me. His mom was at the doctor. They were told by the doctor that she was going to die. The doctor told me to calm down when I arrived at the doctor's office. I could see the red color. They had the nerve to tell me to calm down after I heard my baby was dying. I took her to the emergency room after I told her she was no longer employed.

I started driving 15 hours for better care

Doctors at the ER told me that she wasn't dying. I was told by the doctor that we had to do it more often. We had to feed her every two hours because her feeds took so long.

The experience with the doctor showed me that I needed to be very active in the care of the boy. I had tried to do research, but I didn't know where to begin. We were told to contact Shriner's Children's Hospital in Ohio. It was a 15-hour drive from our home in Georgia, but once you hear someone is dying, it doesn't matter how far you have to drive.

She had her first surgery when she was 3 months old. She still had formula in her nose when she ate. The doctor said that he was a perfect weight when we went for a follow-up appointment. I knew she'd be fine.

Now, Ariel is thriving

Since then, he has had more operations. She is a typical 4-year-old who likes to play ball and swim. You wouldn't know she had cleft lip and palate when you looked at her. Doctors say she'll grow out of her lisp, even though she has it when she's tired or excited.

My heart goes out to other parents and caregivers who don't know where to start. We have a team at Shriners. They put me through to anyone I need to talk to, no matter what it is.

Parents should remember why they're advocating. I was able to empower myself. My angel is about my grand baby. Nobody will tell me if she is alive or dead. You aren't worth having around if you give up on her. Someone will move heaven and earth to make sure she's alive and well.

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