July is National Cleft and Craniofacial Awareness and Prevention Month—an observance to increase awareness of and provide information about cleft and craniofacial defects and other conditions that can affect the head and face. One mother shares her story below.
Jake snoozing, 1 month old
When the ultrasound technician said, “Well, I see something that we need to discuss,” my husband squeezed my hand. This is what we’d been dreading. A congenital heart defect had shown up in the last several generations of his family, taking the lives of his uncle and brother. So when the technician said “It looks like you son has a cleft lip, “we actually laughed out loud. This was clearly not the reaction she was used to. Once the initial relief wore off, the reality began to sink in. Our son was different. His condition wasn’t life threatening, but his young life would be filled with surgery and pain, therapy and frustration, bullying and exclusion. I grieved. And then I prepared to care for him. I should have prepared to care for myself too.
Jake's awesome wide smile, 3 months old
When Jake was born, the doctor held him up briefly, and then he and his twin sister were whisked away to the NICU. Everyone told me once I saw him I’d instantly fall in love with that tiny wide smile. But that’s not the way it happened. Jake was a difficult newborn who would arch, scream and fight. I began to panic before every feeding. I don’t know if it was because I didn’t get to hold them for the first two days, or because I wasn’t breastfeeding, or because of a million other factors, but I wouldn’t bond with my son for another two months. Whatever the real reason I had trouble bonding with Jake, I felt it must be because he was different, and I was a horrible person for not being able to love him. He deserved so much better than me. For the first few months, I lived in a haze of guilt, shame and anger. I felt I had to hide these awful feelings and pretend like I was the strong, loving mother I was supposed to be. There was so much help available for my son. I didn’t even know to look for help for myself.
Jake and his sister on their first zoo trip, 2 years old
Now, I have a fantastic support network of online forums, a local cleft parents’ group, and several close friends I’ve met through this experience. But it took me a long time to find them all. I had to work through the confusion of emotions on my own. To ease my feelings of guilt, I wrote and illustrated a picture book about a young bear who wonders if his mama bear loved him before his lip was repaired, or if she loves him now. I also started a doll clinic where we make dolls with clefts and repair scars. I’ve found peace in helping other parents through the difficult first year of the cleft journey. There is a clear treatment path for children born with clefts. Their needs are obvious to see. But the needs of their parents can get pushed aside as unimportant, often by the parents themselves. As I’ve told many struggling parents “to care for your child, you need to care for yourself first.” That’s easy to say, but difficult to do. It feels selfish. Over the last two years, I’ve had to learn how.
CDC would like to thank Kate for sharing her
About NCBDDD’s Work
Each year, about 4,400 infants in the United States are born with a cleft lip with or without a cleft palate and about 2,700 infants are born with a cleft palate alone (1), which together are called ‘orofacial clefts.’ CDC’s National Center on Birth Defects and Developmental Disabilities (NCBDDD) is learning more about orofacial clefts by tracking and conducting research to guide prevention efforts.
- Just like the many families affected by children with birth defects, CDC wants to find out what causes these conditions. We look at factors that might increase the risk of a mother having a child with orofacial clefts. For example, women who smoke during pregnancy are more likely to have a baby with an orofacial cleft than women who do not smoke (2).
- To understand how orofacial clefts impact affected children and their families, CDC and its partners conduct studies on health care use and medical costs (3-5), barriers to care (6), quality of life and outcomes (7-9). For example, in a recent study conducted in one state using data from a birth defects tracking program, researchers found that families can have problems accessing medical care (ex. costs, transportation, and getting referrals to treatment) for their children with orofacial clefts (6).
CDC and its partners continue to look at these issues to improve the lives of children and families affected by cleft and craniofacial conditions present at birth.
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For additional information, see resources for parents.
- Parker SE, Mai CT, Canfield MA, et al. Updated national birth prevalence estimates for selected birth defects in the United States, 2004-2006. Birth Defects Res A Clin Mol Teratol. 2010;88:1008–16.
- Honein MA, Rasmussen SA, Reefhuis J, Romitti P, Lammer EJ, Sun L, et al. Maternal smoking, environmental tobacco smoke, and the risk of oral clefts. Epidemiology 2007;18(2):226–33.
- Cassell CH, Meyer R, Daniels J. Health care expenditures among Medicaid enrolled children with and without orofacial clefts in North Carolina, 1995-2002. Birth Defects Res A Clin Mol Teratol 2008;82:785-794.
- Weiss J, Kotelchuck M, Grosse S, et al. Hospital use and associated costs of children ages zero-to-two years with craniofacial malformations in Massachusetts. Birth Defects Res A Clin Mol Teratol2009;85:925-934.
- Boulet SL, Grosse SD, Honein MA, et al. Children with orofacial clefts: health care use and costs among a privately insured population. Public Health Rep2009;124:447-453.
- Cassell CH, Mendez DD, Strauss RP. Maternal perspectives: qualitative responses about perceived barriers to care among children with orofacial clefts in North Carolina. Cleft Palate Craniofac J. 2012;49:262-269.
- Austin AA, Druschel C, Tyler MC, et al. Interdisciplinary craniofacial teams compared with individual providers: is orofacial cleft care more comprehensive and do parents perceive better outcomes? Cleft Palate Craniofac J. 2010;47:1-8.
- Wehby GL, Tyler MC, Lindgren S, et al. Oral clefts and behavioral health of young children. Oral Dis. 2012;18:74-84.
- Damiano PC, Tyler MC, Romitti PA, et al. Demographic characteristics, care, and outcomes for children with oral clefts in three states using participants form the National Birth Defects Prevention Study. Cleft Palate Craniofac J. 2009;46:575-582.