Discharge Instructions for Craniosynostosis
Discharge Instructions for Craniosynostosis
Your baby has been diagnosed with craniosynostosis. This happens when bones in your baby’s skull grow together, or fuse, too early. A newborn’s skull is made up of separate bones that haven’t yet fused. The separate bones allow the skull to expand as the brain grows. Normally, the skull bones begin to fuse after birth, and the frontal soft spot (frontal fontanelle) closes by about 2 years of age. However, the sutures (the regions where bony plates connect) remain flexible throughout childhood to allow the brain to grow. If the bones fuse too early, brain growth can be restricted or the shape of the head will be unusual. This can lead to developmental problems and sometimes seizures. Your baby has had surgery to open the fused bones and to create space for brain growth. Below are instructions for home care after this surgery.
Incision care
Suggestions for taking care of your baby's incision include:
Follow your healthcare provider’s instructions for how to best position your baby for sleeping while the incision is healing.
Wash your baby’s incision with mild soap and water. Pat the incision dry with a soft towel.
Don’t use oils, lotions, or creams on the incision unless you’ve been told to do so by your baby’s healthcare provider. These can weaken sutures and cause the wound to open.
Don’t soak the incision in water.
For at least 6 months after the sutures are removed, protect the incision from the sun. Have your baby wear a hat, scarf, or sun block.
Activity
Suggestions for your baby's activities include:
Keep your baby from activities that put pressure on the incision or might cause the incision to open.
Remove low furniture with sharp edges, such as coffee tables, to protect your baby from head injuries.
Gently turn your baby’s head from side to side 4 times per day to help prevent the neck from becoming stiff.
Other home care
Other suggestions for your baby's care at home include:
Feed your baby his or her regular diet.
Make sure your baby avoids exertion, heat, stress, and fatigue.
Prevent your baby from picking, scratching, or pulling at the area around the incision. If you need to, put mittens or socks on his or her hands.
If a helmet is prescribed after surgery, please follow your surgeon's instructions on when and how long it should be worn (usually every day, 24/7, for 6 to 8 months). A helmet is not recommended unless prescribed by your surgeon.
When to call your baby's healthcare provider
Call the healthcare provider right away or seek immediate medical attention if your baby has any of the following:
Fever (see Fever and children, below)
Separation of the skin at the incision site
Drainage, redness, warmth, or swelling at the incision site
Large collection of fluid under the skin
Unusual drowsiness
Weakness of arms or legs
Headache or visual disturbance
Seizures
Vomiting
Cloudy or foul-smelling urine
Difficulty breathing
Fever and children
Always use a digital thermometer to check your child’s temperature. Never use a mercury thermometer.
For infants and toddlers, be sure to use a rectal thermometer correctly. A rectal thermometer may accidentally poke a hole in (perforate) the rectum. It may also pass on germs from the stool. Always follow the product maker’s directions for proper use. If you don’t feel comfortable taking a rectal temperature, use another method. When you talk to your child’s healthcare provider, tell him or her which method you used to take your child’s temperature.
Here are guidelines for fever temperature. Ear temperatures aren’t accurate before 6 months of age. Don’t take an oral temperature until your child is at least 4 years old.
Infant under 3 months old:
Ask your child’s healthcare provider how you should take the temperature.
Rectal or forehead (temporal artery) temperature of 100.4°F (38°C) or higher, or as directed by the provider
Armpit temperature of 99°F (37.2°C) or higher, or as directed by the provider
Child age 3 to 36 months:
Rectal, forehead (temporal artery), or ear temperature of 102°F (38.9°C) or higher, or as directed by the provider
Armpit temperature of 101°F (38.3°C) or higher, or as directed by the provider
Child of any age:
Repeated temperature of 104°F (40°C) or higher, or as directed by the provider
Fever that lasts more than 24 hours in a child under 2 years old. Or a fever that lasts for 3 days in a child 2 years or older.
Updated:  
June 02, 2018
Sources:  
Overview of Craniosynostosis. UpToDate
Reviewed By:  
Jasmin, Luc, MD,Sather, Rita, RN