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Wisdom Wednesdays: Parenting a Child with Cleft

Cleft lip and palate is very manageable and fairly common (in the lineup of birth defects), but I wouldn’t necessarily label it as a “minor special need.” I did my research and read as much as I could before we checked that box on the special needs list, but here’s what I know now, two years after our adoption.

1. “Oh yeah, that’s just a simple surgery to fix her lip and you’ll hardly be able to tell a difference when she’s older.” This was the most common response when we told people our daughter had cleft lip and palate. Thinking cleft is a minor cosmetic fix is a common misconception.  I was surprised at how many people didn’t realize the difference between a cleft lip and a cleft palate (they thought they were one and the same). Be prepared to patiently explain the details, over and over. Try to look at actual photos (as opposed to illustrations) of a cleft palate ahead of adoption. It can be kind of shocking to see just how open and how wide the cleft is when you look in your child’s mouth for the first time. Realize that how things look cosmetically is just one small piece of the surgery plan. Nothing will be done with the clefted gumline before permanent teeth come in, and nose surgeries and other possible jaw surgeries don’t happen until your child’s face has stopped growing (in the teenage years).

2. Don’t be afraid to ask many detailed questions of your surgeon. How is his/her bedside manner with your child? Does the surgeon understand how important attachment is with adoption (and how that can be affected by surgery?) If you have more than one surgeon to choose from, make sure you ask about the treatment plan after surgery as well. Don’t assume they are the same from hospital to hospital. If you need to travel to a different city (and have options), consider which city you like to spend time in, because you will be returning for many appointments. Follow your gut instinct. We had surgery scheduled with a surgeon at a well-renowned hospital. There were too many things that gave us an uneasy feeling, so we canceled the surgery and looked elsewhere. We asked more questions, put a lot of focus on the next surgeon’s ability to interact with our daughter, and found a better match for our needs and priorities.

3. Not only do you need to carefully weigh your surgery options, but also you must be aware of what is available for speech services. The ability to make proper speech sounds is completely dependent on airflow out of the nose (or not). A child with cleft palate is unable to control the airflow before the palate is closed. Even after it’s closed, the child is not used to moving their palate — and this is where speech therapy becomes crucial. You will develop a very close relationship with your speech pathologist, and progress is not guaranteed to be speedy. Patience is critical! It can be exhausting to constantly be trying to figure out what your child is saying. It can be frustrating for your child to realize her words aren’t understood, and this may result in challenging behavior. Easily understood speech is an incredibly important part of communication, and when the normal development is interrupted, many facets of daily life are adversely affected.

As is true with many challenges in life, you face these things one step at a time.  By displaying pictures of your child before his or her lip was repaired (along with other family pictures), openly discussing the facts about cleft lip and palate, and answering their questions, you can help your child integrate this as part of their unique life story. 

~Tammia Prottsman, Loudi Foster Care Coordinator

Have any you had similar experiences parenting a cleft child?  We invite you to share your own words of wisdom on this topic in our comments section.

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