Patient and Family Resources
One out of every 700 babies is born with a cleft lip and/or palate. Although every baby is unique, there are many experiences that each child with this condition shares. Austin Smiles aims to connect, empower, and support families/individuals on this journey with useful resources and advice to help make the journey a little easier.
A cleft lip or palate can be diagnosed in utero as early as 13 weeks. A cleft lip can be seen on a regular ultrasound, but cleft palates may go undetected until birth, especially when the lip is not affected. When you get a diagnosis of a cleft lip or palate in utero it is important to realize you are not alone. Although your child’s journey will be different than most children their age, they will be okay. At the time of prenatal diagnosis, you should be immediately referred to a cleft team in your area who will be able to prepare for the care of your child even before they are born.
A child born with cleft lip/palate in the United States could undergo multiple surgeries throughout their adolescence depending on severity. In a series of operations that ideally start at three months old and often stretch into young adulthood, surgeons close the cleft lip and cleft palate and work to shape the face and skull (most adults born with cleft lip and palate report having over 20 operations). Early surgeries focus on mitigating or eliminating the associated fundamental eating, hearing, breathing, and speech problems. Into adulthood, children born with cleft lip and palate may need further dental care, otolaryngology, palate revisions, jaw surgery, rhinoplasty’s, or other secondary operations.
Cuddles for Clefts is a non-profit organization providing Cuddle Packs for children who have a scheduled upcoming cleft-related surgery
Nutrition is one of the biggest challenges parents are faced with when their child is born with a cleft lip and/or palate prior to surgical intervention. Children with an unrepaired cleft lip and/or palate often struggle to get enough suction, preventing many of them from breastfeeding and limiting the success of using a bottle. The lack of suction can lead to poor nutrition and hinder weight gain in the first year. There are many helpful resources and tools to help babies with cleft lip or palate feed more successfully.
Dr. Brown’s Specialty Bottles – Many parents and cleft teams will recommend trying Dr. Brown’s Specialty Feeder. Austin Smiles provides no-cost Dr. Brown’s Specialty Bottles for families in need in Central Texas. To inquire about receiving a specialty bottle, please email email@example.com
Dental & Orthodontic Care
Children born with cleft lip and palate have more unique oral health needs. They often are more susceptible to having crowded teeth, missing teeth, and less bone density in cleft affected areas. It is imperative that these children receive routine dental cleanings, check-ups, and orthodontic oversight from an early age. Oral surgeons will often work with an orthodontic team in late childhood years to ensure children have enough bone to accommodate their adult teeth (See Alveolar Bone Graft). In the early teenage years, children born with more severe cleft lip and palate may need jaw surgery to align their teeth and bite. Orthodontists will work closely with Maxillofacial Surgeons as the child grows and their palate expands, devices like obturators may be used in between palate surgeries to close palatal fistulas – this kind of wraparound care is imperative to a child born with a cleft palate’s wellbeing and development.
Nasoalveolar Molding NAM’s – Many craniofacial teams will implement a NAM device in your child’s treatment plan around the 1st month of life. The NAM is a removable, nonsurgical device that acts as an orthodontic tool to help children with cleft lip and/or palate as they grow before their first surgery. The NAM applies pressure to the cleft, lessening the severity of the opening, creating symmetry, as well as acting as an artificial palate for the baby. This allows the baby to get better suction on the bottle and enables proper weight gain. The NAM device is used prior to the first operation and provides a better surgical outcome.
Children born with a cleft palate have a greater connection between their eustachian tubes and the fluid in their sinuses. This means they are more susceptible to ear infections. Parents should ensure their baby is seen by an ENT frequently in the first year to monitor their baby’s ear health to prevent any permanent hearing loss. Most babies born with a cleft palate will require ear tubes (grommets) to help drain extra fluid from their middle ear.
According to nationwidechildrens.org, around 1 in every 15 children will get ear tubes by the age of three. This surgery is quick, only taking about 10-15 minutes and the tubes will fall out on their own around 9 months after they are inserted.
As a child with a cleft lip or palate begins to develop speech, their habits and speech sounds may be affected by palatal differences. Young children born with cleft lip and or palate can be hard to understand, often sounding hypernasal. They may also have compensatory articulation problems. Early surgical treatment, such as palate repair, often provides children with better speech mechanisms. However, many children born with cleft lip or palate will still need intervention after their initial surgeries from a licensed Speech and Langauge Pathologist (SLP). The SLP will ensure the child is developing speech correctly between operations. Some children may also need additional palate surgeries to help aid with proper speech (See Velopharyngeal Insufficiency).
Austin Smiles currently partners with the Texas State Communication Sciences and Disorders department to offer low-cost speech therapy sessions to children born with cleft lip and palate in the Austin area. To learn more about this program please contact firstname.lastname@example.org
The following articles provide more detailed information on Cleft Lip and Palate speech:
Children born with cleft lip and palate often experience social/emotional issues related to stigma, ridicule, and feelings of isolation. Around the world, there are many resources and support groups for families affected by cleft lip and palate. It is vital that children born with cleft lip and palate, as well as their families know they are not alone.
Support in Austin, TX – For over 35 years, Austin Smiles has been dedicated to the health equity and outcomes of children born with this condition. Each year, Austin Smiles hosts several social/emotional opportunities for children and families to interact and support their peers who have similar challenges. Camp Amigo is our biggest local program, which is a no-cost therapeutic camp for up to 60 campers. The camp provides an opportunity for reflection among their peers to discuss life’s challenges that only children like them can understand.
Austin Smiles also has an online communication platform (Our Cleft Community) for parents and teens around the world where caregivers and children can interact, ask questions, and forge new relationships.
Finding the Right Providers and Craniofacial Team
It is always best to consult with a cleft team when you find out your child will be born with a cleft lip or palate. A Cleft or Craniofacial Multidisciplinary Team is a group of specialists who work together with children and their families to come up with a patient-specific treatment plan for their cleft care.
Cleft lip and palate treatment and coverage look different around the world and it can often be confusing for new parents who are trying to find the best and most affordable care for their child. All states in the US require that health insurance include coverage for children born with cleft lip/palate.
Insurance does not always cover follow-up surgery and parents may have to appeal coverage decisions made by insurance. If you are in the US you can find resources and coverage details by state here.
DISCLAIMER: Every child and cleft are unique, therefore we always encourage you to ultimately follow your surgeon’s and cleft teams’ guidance.
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