#FaceEqualityWeek2019 Rewind: How to Handle Awkward Questions About Your Baby

By Amy Mendillo
Amy Mendillo is a health writer-editor based in Providence, RI. Her forthcoming book, an insider’s guide for families of kids born with cleft lip and palate, will come out in Fall 2020. Visit www.parentsandclefts.com to learn more. 

(Editor's Note: We chose to run this piece by Amy Mendillo during #FaceEquality2019 Week because parenting during these infant years can be difficult when you first bring your newborn baby out into the world. While the world asks questions, you, as parents, must provide answers and advocate for your child. Amy shows us how its done, through anecdotes shared with her from other parents with children born with cleft lip and palate.)

When Jessa first shared the news of her infant son’s cleft lip and palate with close family members, their reactions surprised her.* Ordinarily, Jessa’s parents and relatives responded supportively when challenges arose. This time, unfortunately, some of their comments stung. “My mom doesn’t understand why my baby can’t breastfeed,” she started. “My grandfather refers to my baby’s cleft as a ‘harelip,’ and a friend’s mom has told me that I need to ‘warn people’ before they meet my baby so they aren’t caught off-guard by her defect.” If the remarks had not been so hurtful, Jessa noted, the collection of statements would almost be laughable. “I have handled these situations both well and not so well,” she added.

Interacting with family and friends can be a particularly sensitive topic for parents of kids born with cleft lip and palate (and for parents of children with other conditions). It is stressful enough to field a thoughtless remark about our baby from a stranger in the grocery store—or for that matter to simply anticipate that thoughtless remark. It can be quite a bit more complicated to hear similar comments from loved ones who make up our trusted support system.

As a health writer-editor working on a book for families of kids born with cleft lip and palate, I have interviewed more than 70 parents over the last several years to hear about their experiences with their child, particularly during their baby’s first year. In listening to stories and insights from these parents—and in some cases interviewing more than one generation within a family—I noticed that in many instances close family members lack basic information about cleft lip and palate and the related issues that occur during the early months of life, but also about how emotionally sensitive these topics can feel to a young parent. Jessa’s mom was not wrong to wonder why her grandchild could not breastfeed—after all, she was new to the subject—but she was also unaware that expressing that question repeatedly and in blunt terms might be distressing for her daughter.

Fortunately, there are ways to help these interactions go more smoothly—both for loved ones and parents. One chapter in my book offers techniques for close friends and family members to consider, including tools for active listening, ideas for supportive gestures, and specific sample phrases—all based on academic research, interviews with professionals, insights from parents, and my own experience as a parent of a cleft-affected child. I explain, for example, why the term harelip and other “hot words” don’t hold up anymore. (Jessa’s grandpa can learn the news from a friendly third party!), and provide anecdotes that reveal some ways parents feel about their baby’s appearance—so that loved ones can have a starting point for understanding our perspectives.

As parents, of course, we also play an important role in improving communications with loved ones. To start, we can be as honest and direct with family members as possible about our child’s condition, whether we are discussing medical information or our own feelings. These candid conversations may feel uncomfortable at first or even require advance preparation in order to get the words just right. We can also do our best to be constructive with family members when a conflict arises, make an effort to put ourselves in their shoes, and try—try!—to give them the benefit of the doubt, especially if we know they mean well. They, too, may need support as they process the news (even if that support doesn’t have to necessarily come from us). We must be mindful of generational differences—not to excuse old-fashioned biases, but to be aware of our parents’ personal histories, perspectives, and even conversational styles.

Sometimes our loved ones, especially grandparents, need time to learn more about their new family member’s condition. Right after her daughter was born, Kristen recalled hearing hurtful comments from her own mother.

“My mom came in to our hospital room,” she remembered, “and said she was concerned about ‘how they were going to fix it.’ I was pissed off. I didn't say anything because I didn't want to have a fight in the hospital.”

Then time passed. Kristen’s mother started to take care of the baby on Fridays. “After that, she didn't say anything about it,” Kristen continued. “Everyone fell in love with her lip, even my mom.” Sometimes, family members need time to wrap their head around a situation and accept it, even if their initial response sounds shocking and insensitive.

As parents, we, too, often need to seek the same time and space to process our emotions around the birth of a baby with a cleft lip and palate. My hope is that by hearing stories from others, learning ideas, and methods from current research, family members of all generations can adapt, cope, and even grow from it together.

*Names have been changed.