Mom Shares Advice for Families Expecting a Child With a Cleft Lip or Palate

July marks Cleft and Craniofacial Awareness and Prevention Month, which is dedicated to educating families about cleft lip and palate, and other common craniofacial conditions that can occur within the first three months of pregnancy.

One of the most common birth differences is cleft lip and/or cleft palate. Cleft lip occurs when the lip does not properly form as the fetus develops in the womb. It occurs in about 1 in 1,000 babies. A cleft palate occurs when the tissues that form the roof of the mouth don’t join together before birth. The opening can be repaired with reconstructive plastic surgery.

Shriners Children’s provides internationally recognized craniofacial care ranging from mild to severe cases, regardless of a family’s ability to pay or insurance status. Multiple Shriners Children’s locations have American Cleft Palate Craniofacial Association approved teams on staff. Our plastic surgeons have undergone additional training to evaluate and treat craniofacial conditions in children.

Even though facial clefts are one of the most common birth differences in the U.S., it can be a challenge for families to find education, resources, support and specialized treatment.

We asked Jennifer, the mom of one of our cleft lip and palate patients at Shriners Children’s Ohio, to talk about her journey and share advice for families who may have just received a cleft lip or palate diagnosis.

Tell us about your daughter, Charlie Gail, and your journey at Shriners Children’s.

Charlie Gail was born in October 2021 with a cleft lip and palate (CLP). We found out while we were still pregnant with her and didn’t know what to expect for her birth and those first few months afterwards. She’s come a long way and is reaching some important milestones thanks to the surgery and care at Shriners Children’s. I hope other moms can learn from our experience.

A family just received a cleft lip and/or palate diagnosis. What should they know before the baby is born?

It is going to be okay! CLP is a marathon, a lifelong journey, but one that is totally manageable! Also, you need to accept that some things that you may have prepared to do, like breastfeeding, may look a little different, but that doesn’t mean it can’t happen.

What action should families take after learning of the diagnosis?

Start assembling your “team” and meet with them so you know what to expect.

The first year is already chaotic, adding a CLP diagnosis can be overwhelming. Make sure your primary care doctor or pediatrician is familiar with CLP, and then look for specialists for plastic surgery, feeding, speech therapy, dentistry and orthodontics.

Also, make your mental health a priority! Taking care of you as mom, dad or caregiver is just as important.

You looked at a variety of hospitals for Charlie Gail’s treatment. What made you ultimately decide on Shriners Children’s?

The team at Shriners is so experienced that they often know what you and your child will need before you do, and that’s such a welcome relief! They also make you feel comfortable to ask questions – you will likely have a lot, and the team is more than willing to answer them and connect you with other resources. We just had a feeling that Charlie Gail is getting the absolute best care at Shriners.

Charlie Gail, like many Shriners Children’s patients, had her first major surgery at just 3 months old. That had to have been scary for you as a mom. What can other parents expect?

Don’t be afraid to get emotional and taking care of yourself is just as important as being there for your baby. We hesitated leaving our child with the nurses overnight just so we could get a good night sleep. It was hard, but it was the best thing for us and our child. We were in a much better (and well rested) position to go home and face recovery.

You talk about raising a baby born with a cleft lip and palate as a journey. As Charlie Gail approaches her first birthday, what other lessons have you learned?

Yes, babies born with cleft lip and palate are special but they are also just typical babies, so make sure you enjoy those early months! Don’t be afraid to spoil them a little because these little “cleft warriors,” as they are called in the CLP community, are strong and deserve it.

Also, you are never alone in this journey! Even if you don’t know anyone in your immediate circle who has experience with cleft lip and palate, it’s so common that there a ton of resources and support online. There is a huge CLP tribe that you can be part of and we are always here for you.

Multiple Shriners Children's locations offer treatment for cleft lip and/or cleft palate. Please refer to the the location lists on the care detail pages for more information.