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Craniosynostosis Treatment—What to Expect

Craniosynostosis is typically treated with surgery. The goal of treatment is to reduce the pressure in the head and correct the deformities of the face and skull bones. Surgical repair involves both the Craniofacial Surgeon and Neurosurgeon.

General

  • For a week or two after surgery, your child may need extra attention and understanding. Don’t worry about “spoiling” your child during this time. It is OK to respond to your child’s need for extra holding and comforting.
  • Your child will be going to the ICU after surgery and will be sleepy for several hours. Occasionally children need to remain intubated (with the breathing tube left in place) after surgery. Your child will have an IV in place for giving fluids and pain medicines. Your child will have blood levels monitored and may require additional blood transfusions in the days after surgery.

Feeding

  • It may take a day or two for your child to return to their usual feeding regimen. In the first 48 hours after surgery, your child’s eyes may swell closed. While feeding is encouraged during this time, it may be disorienting for him or her and may require extra effort on your part. Your child can resume feeding in their usual fashion, breast or bottle-feeding.
  • When at home it is important to monitor your child’s oral intake and wet diapers. If you notice a significant decrease your child may be becoming dehydrated. If you are concerned about this please call our office. Occasionally children need to come back to the hospital for rehydration.

Activity

  • Your child may take several weeks to return to their usual routine and sleep patterns.
  • Your child should avoid rough play (for example with an older sibling or in day care) for 6 weeks, but we recognize it is hard to control children of this age. Follow all your usual safety measures such as car seats, seat belts in high chairs, etc.
  • Your child will not need a helmet to protect or shape the head after surgery unless instructed by your surgeon.

Pain

  • Surprisingly, despite this being a large surgery, the postoperative pain is fairly minimal. Within a day or two most children are off narcotic pain medicine. Your child may have some mild discomfort at home. Give acetaminophen (Tylenol®), as directed by your child’s doctor. Acetaminophen comes as a tablet, caplet, and liquid. It is used to relieve mild to moderate pain and to reduce fever. It is important to take acetaminophen exactly as directed by your doctor. Follow the directions on the package and ask your doctor or pharmacist to explain any part you do not understand. Do not take more or less of it than prescribed by your doctor. Do not take it any more often than prescribed by your doctor.
  • If your child has more than mild discomfort, the doctor may prescribe medicine to help ease the pain. Give pain medicine as prescribed and instructed by your doctor and nurse.
  • Try to schedule a dose of pain medicine around bedtime, especially for the first few days at home. This will help your child sleep better.

Constipation

  • Keep track of your child’s bowel habits. He or she should return to previous bowel habits. If not, he or she may be constipated.
    • Call your child’s pediatrician or Dr. Morrison if you think your child is constipated.

Skin and Wound Care

  • After surgery your child will have a small plastic drain coming out behind one of the ears. This prevents fluid from accumulating under the skin, and is typically removed a day or two after surgery, before you go home.
  • The incision in the scalp is closed with absorbable sutures that will fall out over the next several weeks. You do need to keep these clean. After 48 hours, you should begin to wash your child’s scalp with a moist washcloth, your usual mild soap, and water. Remove any developing scabs with your fingernail or washcloth.
  • After cleaning dress the suture line with bacitracin ointment for the first week, then switch to plain Vaseline until the sutures fall off. You should keep the suture line clean and greasy, applying ointment twice a day.

Follow-up

  • Your child should be seen in the office 1-2 weeks after surgery.
  • After this visit, you will likely be seen again in about 2 months.
  • When to call your child’s doctor or nurse
  • If your child:
    • has redness, increased swelling, drainage, or bleeding from the scalp incision;
    • has separation of the suture line;
    • has a fever higher than 101.5°F degrees (taken under the arm);
    • has pain that doesn't get better after pain medicine is given;
    • is not drinking liquids or is vomiting;
    • has trouble breathing.

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