Visiting the cleft and craniofacial team when your unborn baby has been diagnosed with a cleft.
Up to 20-30 percent of pregnancies affected by an orofacial cleft are diagnosed prenatally, usually during a routine ultrasosund. Most families are not expecting that their baby will have a cleft, and this news can be emotionally distressing. The benefit to receiving this information prenatally is that it parents a greater opportunity to adjust to the facial difference and also to prepare for the needs of the infant. Babies with clefts often need adapted feeding methods, and this can be reviewed with supplies provided.
Another benefit of the prenatal visit is that prenatal families can meet other families and children with clefts at various stages of life. This will provide the opportunity to network with other families caring for children with a cleft.
Prenatal visits with our team nurse practitioner may occur at Indiana University Hospital after your ultrasound appointment at Maternal Fetal Medicine. More often, these visits can be scheduled during our regular team clinic on Mondays at Riley Outpatient Center at Indiana University Health. Prenatal visits can also occur on a Saturday at Indiana University Health North Hospital, on the northside of Indianapolis. Your visit allows you to meet more members of the team, as well as see where appointments will occur once your baby is born.
You will meet with the team nurse practitioner and craniofacial surgeon who will discuss the concept of team care, and introduce your child’s timeline of care. The nurse practitioner will also discuss cleft feeding, and provide specialty cleft feeding nipples and bottles, for you to use at home. Our educational notebook "A Guide for Families: Cleft Lip and Palate" will also be provided and discussed. The craniofacial surgeon will discuss potential surgeries as well as other health issues that may be a concern, such as dental, hearing, and speech.
If you have a video or pictures of the ultrasound, this may be helpful to the physicians in explaining the care of your child after birth.
The expectant parents and grandparents-to-be, as well as any significant others who will be providing support or who will be involved in your child’s care are welcome.
Most parents take advantage of online resources and have searched the internet. We recommend the site sponsored by the American Cleft Palate Association www.cleftline.org for general information about clefts.
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
