Kim Maddox's granddaughter, Ariel, was born with cleft lip and palate.
A pediatrician told Kim that Ariel would die because she had so much trouble eating.
This is Maddox's story, as told to Kelly Burch.
This as-told-to essay is based on a conversation with Kim Maddox. It has been edited for length and clarity.
When my granddaughter Ariel was born, she came home to my house. My son and Ariel's mother knew that caring for their new baby would be a massive challenge: Ariel had been diagnosed with cleft lip and palate by ultrasound.
From the beginning of Ariel's life, I have been her primary caregiver. I learned how to feed her with special bottles that had an extended nipple and reached all the way to the back of her throat. Still, when she ate, formula would spill from her nose and mouth; we were lucky if half of what we fed Ariel made it into her tiny belly.
One day my husband called me, panicking. He was at the pediatrician with Ariel's mom. The pediatrician told them that Ariel wasn't gaining weight and that she was going to die. I left work and flew to the pediatrician, but when I got there the doctor told me to calm down. I saw red. I'd just been told my baby was dying, and they had the nerve to tell me to calm down? I told her she was fired, and I took Ariel to the emergency room.
I started driving 15 hours for better care
At the ER, doctors weighed Ariel and reassured me that she wasn't dying. The doctor told me we were doing everything right, but that we just had to do it more often. Ariel's feeds took about an hour and a half, and we had to feed her every two hours.
I was so relieved, but that experience with the pediatrician showed me I would need to be very active in Ariel's care. Before that, I had tried to do research, but I hadn't known where to start. A family friend who is a firefighter told us to get in touch with Shriners Children's Hospital in Ohio. It was a 15-hour drive from our home in Georgia, but once you've heard somebody say your child is dying, it doesn't matter how far you have to drive.
Ariel had her first surgery at Shriners when she was 3 months old to correct her lip cleft. Formula still came out of her nose when she ate, but it was a much smaller amount. When we walked through the door for a follow-up appointment, the doctor said Ariel was a perfect weight. After that, I knew she would be OK.
Now, Ariel is thriving
Since then, Ariel has had more surgeries. Today, she's a typical 4-year-old who loves telling stories, playing ball, and swimming. When you look at her, you wouldn't even know she had cleft lip and palate. She has the tiniest lisp when she's tired or excited, but the doctors say she'll grow out of it.
My heart breaks for other parents and caregivers who are where I was in those early days: knowing they need help, but not knowing where to turn. Now, Ariel and I have a personalized support team at Shriners. When I call, they put me right through to anyone I need to talk to, whether it's a nutritionist or a therapist.
I tell other parents to remember why they're advocating. Ariel empowered me. This is about my grandbaby, my angel. No one is going to tell me whether she lives or dies. If you give up on her, as that pediatrician did, you're not worth having around. I'll find someone who moves heaven and earth to make sure she's alive and thriving.
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