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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 and/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 following 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 if your baby has any of the following:

  • Fever:

    • In an infant under 3 months old, a rectal temperature of 100.4°F (38°C) or higher

    • A fever that lasts more than 24 hours in a child under 2 years of age, or for 3 days in a child older than 2 years

    • Your child seems to be getting worse or still acts quite sick when the fever is down

    • Your child has had a seizure caused by the fever

  • 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

 

 
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