Lessons From Adoptive Parents: Advice on Cleft Conditions- What you May Not Know
By Jessica Nguy, China adoptive mom
Are you considering the cleft lip/palate special need, in the process of adopting a child with a cleft lip/palate, or have you recently adopted a child with this condition? We adopted our son 15 months ago, and Iâ€™m still learning something new each day. Iâ€™m not an expert, but here are some lessons Iâ€™ve learned â€œfrom the fieldâ€ that I believe will be helpful for parents starting out on this journey:
1. Choose a name Your child can pronounce
We chose the first name that we did for our son because we thought heâ€™d be able to pronounce it easily after his cleft palate was repaired. I studied linguistics in graduate school and thought for sure I had chosen an â€œeasyâ€ name. Little did I know, even one year after his surgery, my little guy still canâ€™t use his hard palate for speech (although heâ€™s eased his way into using it for eating). I know heâ€™ll be able to pronounce his name someday, but these days I find myself wishing Iâ€™d named him â€œOwen,â€ a name which doesnâ€™t involve the hard palate and which he can pronounce perfectly. (Other names in this category include Neil*, Noah, Ryan, Emma, Anna, Amy, Maya, Mia**).
*My son can pronounce an /n/ sound by blocking off the opening in his mouth with his tongue.
**Each child will vary in his/her development and may or may not be able to pronounce these sounds or others within a given timeframe.
2. Get connected with a craniofacial team
Since we adopted our son, weâ€™ve been fortunate to live in two different metropolitan areas which both hosted excellent hospitals with teams of specialized doctors working together to meet the needs of children with a cleft lip or palate. If you live within reasonable driving distance of one of these big city hospitals, be sure to contact them before you bring your child home and gather information about their craniofacial teams and/or clinics. Rather than finding individual doctors on your own, itâ€™s best to find them through the craniofacial team (and I learned this the hard way in some cases). Some hospitals have a craniofacial clinic that you can take your child to upon arriving home and then once per year (or more, depending on their recommendations) to check in with the different specialists all in one place. (Yes, it can get long, so bring plenty of toys and snacks!) The specialists you will likely need to see are a pediatrician (try to find one who specializes in international adoption), craniofacial surgeon, ENT, dentist, speech pathologist, and orthodontist.