My granddaughter was born with a cleft lip and palate

  • Kim Maddox’s granddaughter Ariel was born with a cleft lip and palate.
  • A pediatrician told Kim that Ariel would die because she had so much trouble eating.
  • This is Maddox’s story, told to Kelly Burch.

This say-to-say 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 to my house. My son and Ariel’s mother knew caring for their new baby would be a huge challenge: Ariel had been diagnosed with cleft lip and palate by ultrasound.

From the start of Ariel’s life, I have been her primary caregiver. I learned to feed her with bottles which had an elongated nipple and reached the back of her throat. However, when she ate, formula flow from his nose and mouth; we were lucky if half of what we gave Ariel ended up in her little belly.

Kim Maddox's granddaughter before surgery

Courtesy of Kim Maddox

One day my husband called me in a panic. He was at the pediatrician with Ariel’s mother. The pediatrician told them that Ariel did not gain weight and she was going to die. I left work and went to the pediatrician, but when I got there the doctor told me to calm down. I saw red. I was just told my baby was dying, and they had the nerve to tell me to calm down? I told her she was fired and took Ariel to the ER.

I started driving 15 hours for better care

In the ER, the doctors weighed Ariel and assured me she was not dying. The doctor told me that we were doing everything right, but we just had to do it more often. Ariel’s feedings lasted about an hour and a half, and we had to feed her every two hours.

I was so relieved, but this experience with the pediatrician showed me that I had to be very active in Ariel’s care. Before that, I had tried to do some research, but I didn’t know where to start. A friend of the family who is a firefighter told us to contact Shriners Hospital for Children in Ohio. It was a 15 hour drive from our home in Georgia, but once you hear someone say your child is dying, it doesn’t matter how far you have to drive.

Ariel had her first surgery at the Shriners when she was 3 months old to correct her cleft lip. The 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 the perfect weight. After that, I knew she would be fine.

Now Ariel is booming

Since then, Ariel has had more surgeries. Today, she’s a typical 4-year-old who loves storytelling, playing ball and swimming. When you look at her, you wouldn’t even know she had a cleft lip and palate. She has the slightest lisp when she’s tired or excited, but doctors say she’ll be fine.

Kim Maddox's granddaughter posing with a balloon

Courtesy of Kim Maddox

My heart breaks for the 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 directly in touch with anyone I need to talk to, whether it’s a nutritionist or a therapist.

I tell other parents to remember why they are pleading. Ariel gave me power. It’s about my grandchild, my angel. No one will tell me if she lives or dies. If you give it up, like that pediatrician did, you’re not worth being with. I’ll find someone who will move heaven and earth to make sure she’s alive and thriving.

Christine E. Phillips