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Pregnant woman talking with her doctor.

Preparing for a Baby With Cleft Lip and Palate

To all the parents who have had an anatomy ultrasound and were told their baby may have a cleft lip and palate, you may have wondered, “What happens now?”

When this happened to us, first we said this: “My sweet son (or daughter), you are more!” Next, we buckled down and prepared to navigate the abrupt, unsuspected news of a possible diagnosis that is now our life with a beautiful cranio warrior.

After a routine 20-week ultrasound revealed our growing baby had a cleft lip and palate, fear flooded the deepest parts of my momma soul, and I felt the need for more information. This was our second baby. This was a routine ultrasound. What kind of information do I need, I wondered? What kind of specialist?

The next few days were crippling with the routine and monotony of work and schedules. We were trying to hide behind the news that crashed into our “expecting a second child” excitement. The questions of how, when, and why we were facing whatever was ahead was on constant replay in my head. Could it be an error? Could it be more than a suspicion of cleft lip and palate? Where would we go for future appointments? Where would we deliver? How would our baby eat? How do we connect with specialists? Who are the best specialists? Has anyone else experienced this? How long should I wait for a call from the specialty office? Do I need a referral? Did my obstetrician make the referral?

I believe most parents experience this paralyzing uproar of questions, but then what? You settle into this numb ability to start seeking answers yourself. It’s not worth it. Refrain from Google. Refrain from searching medical procedures and practices. Refrain from allowing the unknown to create disruption and disorder. When I learned this, I learned a new peace.

I had devoured article after article and seen picture after picture only to learn that many of the practices and opinions I had researched would not even pertain to my beautiful son. I allowed myself to be consumed in a dark cloud of confusion, questions, and procedures that may or may not have anything to do with what was ahead for us. I cried. I panicked. I begged for the diagnosis to be wrong. And then, I walked into our scheduled appointment at CHKD’s Cleft and Craniofacial Center pleading for someone to help my unborn child; and that they did!

We were connected with another family whose baby had the same condition as our son. We learned firsthand what to expect, and we established a relationship where we could ask all the questions that we needed, knowing that we were seeing the same specialists with the same medical practices. Our fear of the unknown transitioned to assurance and confidence that we were ready for this new little baby.

All the articles I read, and the intense panic and questioning I felt, were all in vain. We learned to trust our cranio team, live moment by moment, and wait to learn what procedures and changes we would have to make to accommodate our newest member of our family.

If you are a parent facing something similar, know this. Your child is more and you are not alone.

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About Craniofacial Parent Advisory Council

About Craniofacial Parent Advisory Council

CHKD's Craniofacial Parent Advisory Council consists of current and former patients and family members who have experienced care at our Cleft and Craniofacial Center. Council members provide feedback to ensure the craniofacial center consistently offers the best care possible. They also directly support other patients and families undergoing treatment. All members undergo an application process before being selected for the council.