To Me, You Are Perfect: Cleft Palate Babies

Moments after my second baby boy was born, we asked the hospital pediatrician to see if he had a cleft palate like our first son. My husband came over to me with the good news: no problems! A wave of relief swept over me; we would not have to go through another year of extra doctor appointments, another surgery, or another messy breastfeeding experience.

With baby boy back in my arms, I began nursing. We immediately recognized the sucking sound and we knew the doctor had missed it. We peeked inside his little mouth and saw an upside-down, v-shaped hole in the back of his throat. This part of the mouth is called the soft palate (the hard palate is the roof of the mouth). When a baby sucks on a pacifier, bottle, or breast, air passes through the opening and creates a smacking sound à la Maggie Simpson. Milk also tends to go through the opening and up through the nose. I am told that most babies with a cleft palate cannot get a proper suction to breastfeed effectively, but I was lucky and determined.

Relief faded into disappointment, but at least we knew exactly what to expect and how to proceed. We will always remember the truly excellent care provided by Dr. John Polley, a leader in the craniofacial field who guided and educated us through our first baby’s surgery. The cleft affects feeding, hearing, and speech, so it is crucial to repair it before age one.

First, we selected a Craniofacial team at UCLA. We met with the plastic surgeon and determined a timeline: our son would have surgery between 10-12 months to repair the cleft palate, close the branchial cleft cyst in his neck, and receive ear tubes. We proceeded with regular pediatric checkups, craniofacial clinic examinations, ear-nose- throat visits, audiology screenings, pre-ops, and post-ops.

The surgery takes 2-3 hours for the ENT to insert ear tubes and plastic/oral surgeon to repair the cleft. Pain is managed with general anesthesia during the procedure and IV medication afterward. The first 24 hours of recovery are the hardest, as our babies emerge bleeding, swollen, hungry, and totally disoriented. Swallowing hurts and movement is restricted by IVs, monitors, arm restraints, and other safety precautions. While we gently try feedings during the hospital stay, the baby stays hydrated with IV fluids. By the next morning, our boys have started to drink enough to allow us to return home. We quickly transition from prescription pain medication to regular Tylenol or Advil/Motrin for a few more days.

CleftPalateSurgeryPhotos

By one week our boys have visibly improved: happily playing and drinking/eating more comfortably. After three weeks the stitches have mostly dissolved and our little guys are as good as new. Follow-up steps include another hearing test, speech evaluation, and periodic visits with each specialist. The ear tubes are supposed to fall out on their own after a couple of years but our oldest had his surgically removed at age 3.

All three of our boys were born with cleft palates. Our first son had surgery at 8 months in Chicago, the second at 11 months in Los Angeles, and the third at 9 months in Hartford. (My husband’s career keeps us moving every few years).

Before I had children, I thought pregnancy and childbirth were pretty straightforward. Everyone I knew seemed to have healthy babies with no complications. Definitely two young, healthy parents would have no issues. So when my first son was born and we discovered the cleft, I felt scared, upset, and self-conscious. My baby was not perfect. I did not want to tell people because I only wanted our family and friends to celebrate his birth…not worry and ask questions about his development. We have no known family history of this issue and it is nearly impossible to detect during pregnancy. Now I have a circle of friends experiencing a variety of complications and I wanted to share my story. With so much more knowledge and experience, I now feel comfortable talking about it and I think it is important to do so.

Every family faces challenges, whether obvious or not, whether shared publicly or kept private. “Perfect” is a myth that doesn’t mean anything. To quote my favorite MOPS theme from 2013: life is “a beautiful mess.” And I am learning to embrace the messiness.

To learn more, please check out these resources below:

CDC Facts about Cleft Lip and Cleft Palate: www.cdc.gov/ncbddd/birthdefects/cleftlip.html
Cleft Palate Foundation: www.cleftline.org


Carrie Hunter

The Hunter Boys

Hillary Strater Photography

Thanks for reading my story! I’m Carrie — I grew up in San Francisco and my first “kids” were my algebra and geometry students. I married my love and began a new adventure as a Coast Guard spouse. Now my hands are full with three active little ones and we are busy exploring our new home in Connecticut.