How Can I Prepare for My Baby's Cleft Palate?

My baby was recently diagnosed with a cleft lip and palate at the 20-week ultrasound. Any perspective on how to prepare and things to ask doctors?
—New Mom

First of all, congratulations on the incoming baby! I can imagine this is producing so much anxiety, but I hope there are moments to continue to celebrate.

I am not a doctor (as you know), and your OB, pediatrician, and other specialists are going to be crucial partners in this journey. Cleft lip/palate issues occur in about 1 in 700 births, so they are rare but not that rare. Typically they will be treated with surgery, but the exact schedule of that will depend on the case details. I don’t know these details (and you may not yet either). But here are three questions you might ask and keep in mind.

These, by the way, may be broadly applicable to any prenatal diagnosis.

Question 1: What further testing would you recommend now?

In the case of cleft lip and palate, about 30% of cases are associated with another genetic condition, and about 30% have other physical abnormalities present. Additional prenatal genetic testing and additional ultrasounds are a common approach to assessing these possibilities.

Question 2: When the baby is born, what should I be prepared for immediately?

It may be helpful to prepare for any early struggles. In particular, cleft lip and palate are often associated with feeding difficulties. Depending on the details, it may be difficult for your child to breastfeed or to take a bottle, or both. Being prepared for the possible complications, and having a concrete plan for how you will adapt in these early days, is going to make things a lot easier.

Question 3: Can you map out the decisions we are likely to need to make in the first few months?

As with many physical conditions at birth, there will be a number of decisions to make in the first several months about timing of surgery, what type of surgery is undertaken, and how surgeries may be combined or not. You’re unlikely to be able to make these decisions fully before birth, but that doesn’t mean you cannot anticipate them. Mapping out the decision nodes may help you better prepare.

Very best of luck, and congratulations again.