Special Note to Parents of a Newborn or Baby-to-Be-Born with a Cleft Lip/Palate

If you are a parent of a newborn with a cleft lip and cleft palate, or a parent-to-be whose unborn baby will be born with a cleft lip and cleft palate, the community of Virginia Smiles would first like to say,

"Congratulations on the birth of your beautiful new baby!"

Of course, parents face tremendous emotions about their new baby, but different feelings and emotions come with a baby born with a cleft lip and palate. Parents may be wondering "What did we do wrong," (the answer is NOTHING!) or "Where did this come from?" (Most cases of cleft lip and palate are isolated, never before present in the family, and no other birth defects are present), or "What does this mean for my child?" (that he or she will live a happy, normal life as long as the PARENTS keep telling the child that they are beautiful, and loved very much). The Virginia Smiles video, "A Beautiful Child, Welcoming a Baby with a Cleft Lip and Palate" discusses all these issues and brings a message of hope and encouragement to families of children born with a cleft lip and palate. CLICK HERE to view the video's description and to order.

• The first thing that Virginia Smiles recommends for parents, is to RELAX. Parents in Virginia must realize that they are in the best place in the world to have a child born with a cleft lip and palate, because the surgeons and craniofacial teams in Virginia and the Washington DC area use the most up-to-date methods of cleft repair, and are sought after by people around the world.
• Second, the parents must choose a Craniofacial Team of care for their child. A Craniofacial Team is recommended by the Cleft Palate Foundation as the best way to care for a child born with a cleft lip and palate. A Craniofacial Team is an interdisciplinary team of specialists who work together, and with the family, to maintain the child's health care plan. Depending on the child's individual needs, the specialists on a team may include:
  • an audiologist (who assesses hearing);
  • a surgeon (such as a plastic surgeon, an oral/maxillofacial surgeon, a craniofacial surgeon, or a neurosurgeon);
  • a pediatric dentist or other dental specialist (such as a prosthodontist, who makes prosthetic devices for the mouth);
  • an orthodontist (who straightens the teeth and aligns the jaws);
  • a geneticist (who screens patients for craniofacial syndromes and helps parents and adult patients understand the chances of having more children with these conditions);
  • a nurse (who helps with feeding problems and provides ongoing supervision of the child's health);
  • an otolaryngologist (an "ear nose and throat" doctor, or "ENT");
  • a pediatrician (to monitor overall health and development);
  • a psychologist or other mental health specialist (to support the family and assess any adjustment problems);
  • a speech-language pathologist (who assesses not only speech but also feeding problems);
  • and other necessary specialists who treat specific aspects of complex craniofacial anomalies.

  When these specialists work with the family as a team, treatment goals can be individualized for each child, and parents and health care providers can make the best choices for treatment by consulting with each other. Since growth is a significant factor in the ultimate outcome of treatment, it is recommended by the Cleft Palate Foundation that the child be assessed thoroughly and regularly by the Craniofacial Team until young adulthood.

• Third, time for the interviews. Since the Craniofacial teams in Virginia and the Washington DC area all have slightly different methods of caring for children born with a cleft lip/palate, Virginia Smiles recommends that parents interview all the teams available in the geographic area, ask questions and find out as much information as possible about each team. For a list of Craniofacial Teams in Virginia and the Washington DC area, CLICK HERE.

  Parents must also remember that Craniofacial Teams that are not in the geographic area will most likely have a Ronald McDonald house, or other type of housing available so that overnight stays can be more comfortable for the family.

  It is imperative that families choose a Craniofacial Team of care for their child very carefully, after considerable thought, research, interviewing, and discussion. Some teams will charge a fee for an interview consultation, others will not. It is best if parents make a list of questions to ask during the interview, and, if possible, bring the child to the interview for the surgeon to see. The Craniofacial Team will care for the child through adulthood, so families must remember that the team of care, as well as the method of repair, will be with the child throughout his or her growing life.

• Fourth is feeding. After a Craniofacial Team of care is selected, it is best that parents prepare for the feeding challenges of their new baby.
  1. Contact the Cleft Palate Foundation for a copy of their new video, "Feeding an Infant with a cleft." View this video with all family members who will be involved with feeding your new baby. Also, share the video with your child’s pediatrician or other health care provider(s), so they are aware of the feeding challenges your new baby will or may have.
  2. Secure a professional Speech or Occupational Therapist, who specializes in feeding infants born with a cleft. Your local craniofacial team can help you find this professional. It is best if this professional can meet with your new baby as soon after birth as possible to help the baby secure a feeding instrument and feeding method.
  3. If possible, purchase one of all three feeding instruments for infants born with a cleft: the SpecialNeeds Feeder by Medela (formerly called the Haberman Feeder), the Pigeon Feeder, distributed by Children’s Medical Ventures, and the Cleft Palate Nurser by Mead Johnson. Bring all three to the hospital when your baby will be born.
  4. Secure a double-electric breast pump. Infants born with a cleft palate will not be able to establish an effective suck to nurse directly from the breast; however, breast milk is very important to these infants since it is a clear liquid and can be given to the child immediately after surgery. Be prepared to pump and store as much breast milk as possible to feed your baby especially during the first year.
• Fifth: Infants born in Virginia with a CLEFT PALATE automatically qualify for the early intervention services of the Infant Toddler Connection. These services are especially important to infants born with a cleft palate because during their first year of life, their feeding methods and instruments change several times as they go through their repair surgeries. Many surgeons require that infants restrain their arms for a period of time after surgery so the baby won’t touch or affect the surgical area. The early intervention services will help the baby through these changes in feeding, as well as get those arm muscles moving again after being restrained. The early intervention services also help the infant with the early speech and language development. Contact your local Infant and Toddler Connection office and schedule an evaluation as soon as your baby is born. Find the appropriate contact information by visiting www.infantva.org.
• Sixth, get ready for the first repair surgery. These surgeries are usually more difficult for the parents than for the infants. Parents must remember to follow the instructions of the surgeon to the letter. The Virginia Smiles Newsletter, Volume 2005 Number 2, has a feature article called, "Getting Ready for Surgery," which describes the importance of consulting the hospital's Child Life Specialist to help the child (especially an older child) prepare for surgery, in addition to helpful hints from other parents on what to take, what not to take to the hospital. For a copy of past issues of the Virginia Smiles Newsletter, submit an inquiry to info@Virginia-Smiles.org.

A final, special note from the Board of Directors of Virginia Smiles:

Virginia Smiles can help families going through these processes by hooking them up with parent to parent support or another family in their geographic area using the same Craniofacial Team of care. In addition, Virginia Smiles has offer other helpful information through their newsletter, or by hosting events for families to come together to visit with other families of children born with a cleft lip/palate. Children in the Virginia Smiles community have said that they appreciate seeing others who are like them, so that they know they are not alone.

Virginia Smiles reminds parents to enjoy their child, and make the journey of cleft repair memorable by taking lots of pictures, before, during, and after their child's cleft repair. The first year can be challenging, so Virginia Smiles recommends that parents plan a super-celebration for the first birthday! It's really a milestone to celebrate!

Best wishes,

The Board of Directors of Virginia Smiles

Karen Adelstein, Paula Crosby, Paula Verdun Gorman, and Paula Miller