Babies born with a cleft lip or cleft palate, or both, will face some additional challenges in the early years of their lives, and so will their parents. Babies with clefts need to have surgery, learn special feeding techniques, and see doctors and therapists who can help them thrive like any other kid.
If you’re the parent of a child with a cleft lip and/or palate, know that experts are ready to help and many parents have traveled this road before. Read on for tips from a mom, a pediatric ear, nose and throat doctor, and a feeding therapist.
1. Allow yourself to feel difficult feelings.
It’s normal to be shocked and upset when you find out your baby has a cleft lip or palate, or both, either during a prenatal ultrasound or soon after birth. A cleft lip is when the lip develops “open” to the nose; a cleft palate means the roof of the mouth did not form properly.
“Give yourself permission to mourn what was and the loss of the ‘normal,’” says Katie Krist, whose son Nolan had a cleft lip and palate. “As moms, we want to put on that positive attitude, and while that’s important, it’s also OK to mourn the expectations you had.”
Also know that you may be surprised how quickly you adapt to your baby’s facial differences and grow to love their unique appearance, she says. “The shock of it is momentary when you look at the grand scheme of your child’s life.”
2. Assemble your team early, and don’t be afraid to ask lots of questions.
If you find out during pregnancy that your baby has a cleft lip (a cleft palate is difficult to detect until after birth), start looking for a pediatric otolaryngologist (ENT) and a speech therapist (who will help with feeding issues). Your pediatrician can help with recommendations; if this is your first baby, you can still make an appointment with a pediatrician or a specialist to get information.
“Parents should feel empowered to seek as much information as they need, as early as they need it, to start understanding the process,” says UNC Health pediatric otolaryngologist and craniofacial surgeon Lauren Leeper, MD. “It is OK to ask questions of the people who are going to take care of your child, and to ask more questions, and to ask for another visit.”
Sometimes people don’t know their baby has a cleft until the baby is born. In that case, ask for help at your hospital or from your pediatrician to get your specialists in place.
3. Plan ahead if you want to feed your baby breast milk.
Babies with a cleft palate typically cannot get enough milk from nursing at their mother’s breast because they have trouble creating suction. It is possible but tricky if the baby has only a cleft lip. But moms who want to feed their babies breast milk still can by pumping and using a special bottle, says Lillian Scott, a UNC Health speech-language pathologist who specializes in feeding and is also an International Board-certified lactation consultant, or IBCLC.
She recommends seeing an IBCLC as soon as you know about your baby’s cleft so you can make a plan to establish your milk supply.
Some mothers feel grief when they can’t feed their baby in the way they hoped, Scott says. “But I remind them their baby can still lie on their chest, skin-to-skin, and nurse for comfort or just to be close and bond.”
4. Look forward to your baby’s milestones.
It’s natural to focus on the challenges of having a baby with cleft lip and/or palate, but Dr. Leeper encourages parents to expect typical development from their babies.
Cleft lip surgery typically happens around 3 months of age, and cleft palate surgery around 9 to 12 months. In between, babies are learning to eat, communicate their needs, play and babble.
“I tell parents that the first year of life is going to be busier than other babies, but our goal is for them to do everything on the same timeline as any other baby,” Dr. Leeper says.
5. Maintain a relationship with a feeding and speech therapist.
A speech-language pathologist—the more formal term for a feeding and speech therapist—is a great resource during your baby’s first year and beyond. They will help you make sure your baby is nourished and troubleshoot problems that may come up before or after surgery.
When you give birth to a baby with a cleft in a hospital, you’ll probably be visited by a feeding therapist who can teach you how to use the special bottles, Scott says. She encourages parents to make another appointment with a feeding therapist within 10 days of going home to make sure your baby is eating efficiently, getting enough milk and that you feel supported.
This therapist can help when it’s time to introduce foods beyond breast milk or formula, which typically happens around 6 months of age. They will also help your baby learn to sip from an open cup before palate repair, because in the weeks after the surgery they won’t be able to eat solid foods or use a spoon, to protect the sutures.
Eventually, a speech therapist can help as your baby starts to speak, around age 1.
“I tell parents not to hesitate to reach out, even if you feel like it’s going mostly OK but you’re still feeling anxious about something,” Scott says. “If you have questions, get a feeding appointment, and we’ll answer them.”
6. Look for community.
You may think you don’t know anyone with a cleft lip or palate, but when you have a baby with a cleft, you realize you’re in good company, Krist says. About 1 in 700 babies is born with some kind of cleft, Dr. Leeper says.
A repaired cleft lip can be subtly noticeable, as it is for Krist’s now-7-year-old son Nolan, and strangers have approached the family to show their faded scars. These encounters have been kind and gratifying, Krist says.
As a parent of a baby with a cleft lip or palate, you can join a support group to connect with other parents going through the same experience. The Krist family has become involved with CleftProud, a nonprofit advocacy and support group started in North Carolina.
Krist feels a special bond with parents of children who have cleft lip and/or palate.
“It’s kind of a secret society you never wanted to be in, but once you’re part of it, you’re so glad,” she says. “We just kind of get each other.”
If you have questions about your child’s health, talk to your doctor or find one near you.