Thursday, September 27, 2018

Parenting A Child With A Facial Difference, One Cleft Mom's Perspective

Guidebook Underway for Parents of Kids Born with Cleft Lip and Palate by Amy F. Mendillo...

Help Needed! Please email Amy at [email protected] if you would like to share your story. Learn more about how at the bottom of the page.

By Amy Mendillo
From the moment I learned that my daughter would be born with cleft lip and palate, I started to worry about how strangers would respond to her face. Then, a few weeks after her birth, it happened. I took her to the pharmacy one day to run an errand. And as I fumbled around looking for things to buy, an older woman came by, paused at the sight of a baby, and bent over to take a look. She’s staring at my daughter’s clefts, I thought. I had rehearsed a few words for this kind of situation; I had planned to explain that my daughter was born with CLP and would have surgery soon to close the space in her lip. But would I mention that I find her beautiful as she is? Suppose this person says something hurtful? I couldn’t think of any words. The woman leaned in real close. I am so tired, I thought. I hope I don’t cry.
The woman stood up. She smiled. “Why, look,” she said, “at how soundly she sleeps.”
I decided to write a book for parents of kids born with CLP to help them address the practical and emotional challenges of a baby’s first year. After hearing from other parents about their trips to the pharmacy (or the hospital or their family reunion), I wanted, even more, to share their stories and ideas, too. I hope it will feel comforting to hear how others cope with the early parts of this journey, whether we’re feeling worried, overwhelmed, joyous, or in this case, relieved and appreciative for the basic kindness of others. Many parents mention concerns about bonding, or describe a shaky lump in their throats when they hand over their child, literally, to medical people prior to surgery. Some parents feel discomfort related to taking and sharing pictures of their baby. Others wonder why this condition happened to their child in the first place; many mention guilt.
Parents and Clefts (that’s the working title of the book) also addresses practical topics related to navigating a baby’s first year, ranging from bottles to burping to recovering from surgery, based on scores of interviews with professionals and other parents. So whether you’re awake in the middle of the night wondering whether you should enlarge the nipple on your Mead-Johnson bottle (go for it! Yes, cut it with a knife!), thinking through your search for a surgeon and team, or just looking for a clear, personable description of the basics on the condition, this resource will have you covered. When my husband and I were going through this experience with our daughter, we wanted a guidebook on the bedside table (while our baby was screaming, crying, and spitting up milk) rather than yet another desperate search on the Internet (though I love online parents’ groups, too). Parents and Clefts is a practical and emotional resource—written from one parent to another—based on current research, academic articles, firsthand experience, and the collective wisdom of many, parents and professionals. I can’t wait to share it with you.
But first, I need to finish it. If you are a parent of a child born with CLP, I would love to speak with you about your early experiences with your child. I am conducting phone interviews this fall and possibly into Spring 2019, particularly on experiences with pre-surgical devices (like the NAM and other methods) and with cleft palate bottles. But I’d also welcome your stories and insights more generally. Your contribution would be enormously helpful. All interviews are anonymous; you can read more about it at 

If you’re interested in participating, please drop me a line at [email protected]. I would be most grateful for your help. My hope for this book is that parents will feel more informed about their choices, more comfortable with the journey, and reassured that they are not alone.

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