Discharge Instructions for Craniosynostosis

Your baby has craniosynostosis. This happens when bones in your baby’s skull grow together, or fuse, too early. A baby’s skull is made up of separate bones that haven’t yet fused. The separate bones let the skull expand as the brain grows. Normally, the skull bones start to fuse after birth, and the frontal soft spot (frontal fontanelle) closes by about 2 years of age. But the sutures (the places where bony plates connect) stay flexible throughout childhood. This lets the brain 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 make space for brain growth. Below are instructions for home care after this surgery.

Incision care

• Follow the 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 take out, protect the incision from the sun. Have your baby wear a hat, scarf, or sun block.

Activity

• 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

• Feed your baby their 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 your baby's hands.

• If a helmet is prescribed after surgery, follow the surgeon's instructions on when and how long it should be worn. This is usually every day of the week, all day and night (24 hours), for 6 to 8 months. A helmet is not advised unless prescribed by your surgeon. 

When to call your baby's healthcare provider

Call the healthcare provider right away or get immediate medical care 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

• Trouble breathing

Fever and children

Use a digital thermometer to check your child’s temperature. Don’t use a mercury thermometer. There are different kinds and uses of digital thermometers. They include:

• Rectal. For children younger than 3 years, a rectal temperature is the most accurate.

• Forehead (temporal). This works for children age 3 months and older. If a child under 3 months old has signs of illness, this can be used for a first pass. The provider may want to confirm with a rectal temperature.

• Ear (tympanic). Ear temperatures are accurate after 6 months of age, but not before.

• Armpit (axillary). This is the least reliable but may be used for a first pass to check a child of any age with signs of illness. The provider may want to confirm with a rectal temperature.

• Mouth (oral). Don’t use a thermometer in your child’s mouth until he or she is at least 4 years old.

Use the rectal thermometer with care. Follow the product maker’s directions for correct use. Insert it gently. Label it and make sure it’s not used in the mouth. It may pass on germs from the stool. If you don’t feel OK using a rectal thermometer, ask the healthcare provider what type to use instead. When you talk with any healthcare provider about your child’s fever, tell him or her which type you used.

Below are guidelines to know if your young child has a fever. Your child’s healthcare provider may give you different numbers for your child. Follow your provider’s specific instructions.

Fever readings for a baby under 3 months old:

• First, ask your child’s healthcare provider how you should take the temperature.

• Rectal or forehead: 100.4°F (38°C) or higher

• Armpit: 99°F (37.2°C) or higher

Fever readings for a child age 3 months to 36 months (3 years):

• Rectal, forehead, or ear: 102°F (38.9°C) or higher

• Armpit: 101°F (38.3°C) or higher

Call the healthcare provider in these cases:

• Repeated temperature of 104°F (40°C) or higher in a child of any age

• Fever of 100.4° F (38° C) or higher in baby younger than 3 months

• Fever that lasts more than 24 hours in a child under age 2

• Fever that lasts for 3 days in a child age 2 or older