Cleft Lip/Cleft Palate
If you have received a prenatal test result for your child, we are here to support you. Our services are free. Talk with one of our trained consultants to determine if parent care coordination would be helpful for you.
Cleft palate and cleft lip are common facial birth defects that occur when the palate or upper jaw fail to fuse during development. Cleft palate is a gap or split in the roof of the mouth. Cleft lip is a split or notch in the gum line and lip. The causes of cleft lip and cleft palate are unknown, but either may develop if a change occurs in an unborn child’s genes, the mother has diabetes or maternal illness, the unborn child has vitamin deficiencies or an infection, or the unborn child is exposed to drugs or alcohol. Cleft palate and cleft lip are associated with syndromes such as Goldenhar syndrome, Treacher-Collins syndrome, and Pierre-Robin syndrome. After birth, a child with cleft palate or cleft lip may have problems with feeding, hearing, tooth development, and speech. Cleft palate and cleft lip occur in about 1 in 1,000 live births.
Screening and Diagnosis
Cleft lip and cleft palate are usually noticed and diagnosed at birth, but can also be identified via ultrasound around thirteen weeks gestation. Diagnosis does not require testing.
Treatment/Prognosis
Cleft lip and cleft palate are not life-threatening conditions and can usually be treated with surgery and a series of follow up ear tube or facial reconstruction surgeries during childhood depending on the kind of repair that is needed. The initial cleft lip surgery occurs within the three to six months after birth and an initial cleft palate surgery occurs within the baby’s first year. Complications from cleft lip or cleft palate are currently addressed by monitoring children for oral and orthodontic health, treating ear infections, or utilizing speech therapy, feeding strategies, or hearing aids.
Medical advances are continually improving treatment options and outcomes so consulting with specialists and major children’s hospitals may be beneficial to finding the best possible care.
Below are additional support resources that may be helpful.
Sources:
Cleft Lip Surgery | Children’s Minnesota (childrensmn.org)
Cleft Lip and Cleft Palate | UPMC Children's Pittsburgh (chp.edu)
Cleft Palate (cincinnatichildrens.org)
Cleft Lip | Pavilion for Women (texaschildrens.org)
The Fetal Medicine Foundation
Cleft Lip and Cleft Palate: Causes, Diagnosis & Treatment (clevelandclinic.org)
Cleft lip and cleft palate - Diagnosis and treatment - Mayo Clinic
Diagnosis-Specific Support
We empower and support cleft and craniofacial healthcare professionals and the patients they serve through research, education, and advocacy. We promote team care and professional collaboration to ensure the highest quality resources are available to all with craniofacial differences throughout their healthcare journey.
CCA’s mission is to empower and give hope to individuals and families affected by facial differences. CCA envisions a world where all people are accepted for who they are, not how they look.
Out of every 1000 babies born in the U.S., 1 or 2 will have craniofacial disorders. Parents of these children need somewhere to turn for information and support. For more than five decades, FACES: The National Craniofacial Association has been helping these families. With your support, we will continue spreading hope through these needed services.
Through our expertise in treating cleft lip and cleft palate, we create solutions that deliver safe surgery to people where it’s needed most.
The World Craniofacial Foundation provides help, hope and healing for children with craniofacial abnormalities and their families.We work tirelessly so that, some day, all people with craniofacial abnormalities will receive transformative care—regardless of geography or socio-economic class.The WorldCF is the global leader in advocacy for excellent craniofacial patient care, education and research, as well as the primary resource for philanthropic support.
Facebook Groups:
PrenatalDiagnosis.org wants to provide you with a wide range of support including links to helpful Facebook groups. However, we cannot verify the exact content that you will find on Facebook pages and groups, which vary widely by moderator, participants, and topics.
This group for cleft support for ALL. New cleft parents, our older children, and our OGs (older generation) who grew up with having cleft. There will be posts with advice on what to expect or how we have found to help with different situation with our children but we also have adult's and young adults who have had a hard life dealing with cleft, who have been alone or never had a place to open up about it and express their feelings. The truth is as parent with a cleft child or anything a child was born with that was out of our control, might make their life more difficult, and can be scary. At some point another child or adult will point out their cleft? You have had that worry for your child and many of our members have lived through it. The world is cruel and we have to stay strong for each other. Support each other, love each other and maybe this group might just help someone who truly needs just a safe place to vent too.
This is a closed cleft lip and/or palate support group. Anyone who is a cleft parent/adoptive parent/guardian, cleft grandparent, or is pregnant with a cleft child is welcome.