Ear problems: Your doctor will watch your baby carefully for ear infections. When babies have cleft palate, it is easy for fluid to collect inside their ears. Whenever fluid sits in the ear, bacteria can grow and cause an ear infection. Ear infections, or even too much fluid in the ear, can cause a temporary loss of hearing. If your baby gets a fever, is irritable (crying or not sleeping well), or is pulling on his ears, the doctor or nurse practitioner should see him. These symptoms often happen at the same time as a cold or runny nose. If your baby has an ear infections, your doctor may give him an antibiotic. Your baby should also be checked by an otolaryngologist (ear, nose and throat doctor). This otolaryngologist should be a doctor who works with a cleft palate team, or is familiar with caring for a baby with a cleft palate.
You may have heard of babies getting “tubes in their ears.” Most babies with Pierre Robin sequence get fluid in their ears and/or many ear infections. Your baby may get “tubes” (bilateral myringotomy tubes, or BMTs) with surgery. These tubes will drain fluid out of the ears; this should improve hearing and help your baby get fewer infections. Your baby’s hearing should be watched closely by an audiologist, who does hearing tests.
Speech problems: The palate is important for making normal speech sounds. Your child may have trouble making some sounds when he or she begins to talk. Your child should see a speech pathologist who is experienced with children who have cleft palates. Speech therapy is often recommended.
The cleft of the palate is usually fixed with surgery when your child is between 9 and 24 months old. The timing will depend on the size of the cleft, how open the child’s airway is, and general health. Your craniofacial team can tell you the best time for your child’s operation. Surgery may have to wait until your child is older if he has airway or other medical problems.
Sometimes even after palate surgery, your child may still have some problems with his speech, even with speech therapy. When he is older, your child may need another operation to improve his speech. He may also need to have his tonsils and adenoids taken out to help him breathe better. If taking out the tonsils and adenoids does not help his breathing, other treatment may be recommended.
In most children the small chin will grow to normal size. Surgery to enlarge the jaw is rarely needed.
The craniofacial team is made up of many pediatric specialists, each of whom is trained to take care of all your child’s special needs. They work together to make the best plan for treating your child. You as a parent are an important part of the team. The pediatric specialists who are most likely to be taking care of your child are listed below.
Your baby will continue to need a doctor who will do regular care and immunizations. The specialists caring for your baby will work with your doctor and share treatment plans and suggestions after each visit.
This is a doctor who specializes in examining and operating on the cleft palate. He or she will decide on when and what kind of surgery your baby should have to close the cleft palate. He or she may also do other surgeries, such as mandibular distraction osteogenesis if it is needed, or other operations on the cleft palate.
This is a pediatrician who specializes in breathing, airway problems and sleep studies. This doctor may read the sleep studies and give you and the treatment team suggestions about the use of monitors, need for oxygen, surgery or other treatments to help with the airway.
This doctor may help with your baby’s feeding, nutrition, airway, growth and development. Your primary care doctor will still do the routine baby care, but the developmental pediatrician works with him or her to watch for the special needs your baby may have because of the cleft palate and airway problems.
This doctor is also called an ear, nose and throat (ENT) specialist. The otolaryngologist will check your baby’s ears for infections and fluid and decide if tubes are needed. This doctor is the one who puts in the ear tubes and takes out tonsils and adenoids with surgery, if necessary. In some hospitals the otolaryngologist or other surgeons may also repair the cleft palate and help with your baby’s other operations.
The geneticist studies your baby’s family history and physical findings. Some craniofacial problems are inherited. The geneticist can help find out if your baby has a “syndrome,” and if it is inherited. The geneticist can give you facts about your baby’s problem and tell you about the risk of having another baby with the same condition. Many geneticists are also pediatricians who help take care of the same problems as the developmental pediatrician.
The registered nurses work very closely with the plastic surgeon and the other team members. The nurses are skilled and experienced in showing you how to feed your baby. At follow-up visits, the nurses check your baby’s weight, height, head size, growth and development. The nurses help tell you about your baby’s surgery and teach you about taking care of your baby when you leave the hospital. The nurses can answer most of your questions about your baby’s feeding, nutrition, development, general care or treatment plan.
These therapists may help show you how to feed your baby.
The speech pathologist specializes in speech and language and will check your child’s speech. He or she will give you suggestions about things to do to help your child’s speech. Many children will need speech therapy, and to get this help you will be sent to someone in your own community, if possible. If your child has speech that sounds nasal, a video-endoscopy may be performed to determine whether surgery is needed. The speech pathologist may also help show you how to feed your child.
The audiologist does hearing tests and checks the eardrums. If hearing tests are not normal, if your baby has fluid behind the eardrums or has had many ear infections, an appointment with an otolaryngologist will be made.
The dentist will answer questions about your baby’s teeth.
The social worker can help you cope with your baby’s special needs and give you emotional support and guidance. He or she is very knowledgeable about community resources and financial help that may be available for your baby.
A team coordinator may help set your baby’s appointments, keep records, schedule your baby’s operation and talk with the team and local healthcare providers about your baby’s care.
April 15th, 2013 | The Heads Up!!! Foundation recently donated $3,000 to the Cleft and Craniofacial Program at Riley Hospital for Children at IU Health. The gift will pay for the purchase of the “Craniofacial Family Notebook” which is given to parents of newborns at their first clinic visit. The notebook contains valuable educational information about… Continue Reading
February 24th, 2013 | The sweet taste of maple syrup will be flowing at the National Maple Syrup Festival on the first two weekends in March, and all the proceeds from the festival – going to The Heads Up!!! Foundation – will literally help put a sweet smile on the face of hundreds of children born with cleft palates and other facial anomalies. "Each year this… Continue Reading
January 23rd, 2013 | As any experienced parent knows, every developmental stage brings not only new skills that delight, but often difficult behaviors that challenge. The first time that most parents realize this fact is when their sweet baby becomes a “terrible” toddler. Below is a summary of some of the typical, but difficult behaviors that appear in this… Continue Reading
