How is Craniosynostosis Treated?
Craniosynostosis is treated by surgery that opens the fused sutures. This creates space for brain growth. Different kinds of surgeries may be used. The surgeon will discuss the craniosynostosis treatment options available for your child. They will work with you to choose the most appropriate procedure depending on the sutures involved and your child's age when they are diagnosed. A neurosurgeon and a plastic surgeon work together for more complex types of craniosynostosis.
Minimally Invasive Craniosynostosis Surgery
Minimally invasive surgery can be used to treat young infants (younger than 4-5 months of age) with various types of craniosynostosis.
Patients who have minimally invasive surgery will wear a custom-made helmet for a few months after surgery. The helmet will gently mold the child’s head into a more natural shape as the brain grows.
Endoscopic Craniectomy or Strip Craniectomy: One of the most common types of minimally invasive surgery is an endoscopic craniectomy or strip craniectomy. The surgeon will remove the suture by making a small incision (cut) on the scalp. A small camera (endoscope) is used to work along the entire length of the abnormal suture under the scalp. This procedure is called an endoscopic strip craniectomy.
Cranial Springs: This surgery starts with a strip craniectomy, where the surgeon will remove the fused suture. After that, the surgeon places stainless steel springs in the newly opened suture. This gives the brain room to grow. The surgeon will remove the springs a few months later.
Open Craniosynostosis Surgery
Cranial Vault Reconstruction (CVR): The surgeon will remove pieces of the skull near the fused suture and re-shape it to allow room for the brain to grow. A CVR may be done on the entire skull or in individual sections. It is also called cranial vault remodeling or cranial reconstruction.
Cranioplasty: A cranioplasty repairs skull anomalies or holes. A surgeon may repair the skull with the child’s original bone (autologous cranioplasty). They may use artificial bone (skull allograft implant) as well.
Distraction (Cranial Vault Distraction or Cranial Distraction): This surgery is used to expand part of the skull, usually the back of the skull (posterior vault distraction or PVD). During the operation, the surgeon will remove a piece of skull. They will put in a medical device that’s secured by screws. The device allows the skull to increase in size. Once enough bone grows back, the surgeon will take out the screws and device.
Frontal-Orbital Advancement (FOA): An FOA removes and reshapes the skull bone around the base of the forehead. It is often used to treat older infants who have a severe metopic synostosis or coronal synostosis.
What Can I Expect with Craniosynostosis Surgery?
Before Surgery
Before surgery, your child will be scheduled for an appointment with the Craniosynostosis and Cranial Reconstruction Center. This will include neurosurgery and possibly plastic surgery. To help us prepare for a successful surgery, please share your child's full medical history, including any:
- Bleeding disorders within the family
- Medications your child is currently taking
- Any allergies to medication, foods or the environment
Let us know of any unexplained problems with previous surgery.
If your child needs a helmet after surgery, we will schedule a helmet fitting appointment at the Hanger Clinic. They specialize in creating orthotics and prosthetics. This appointment will happen a week or two before your child’s surgery. We’ll let you know when your child’s helmet is ready. You can pick it up right before or after your child’s surgery.
Day of Surgery
On the day of the procedure, a doctor called an anesthesiologist will talk to you about methods of pain control that are appropriate to your child's size and age.
The anesthesiologist will get a thorough history of your child's past anesthetics. They will also need to know any family reactions to general anesthesia. On the day of the surgery, please have this information ready. It is very important to help prevent possible reactions to anesthetics that may be used during the surgery.
Before coming to the hospital, please read the pre-operation checklist below. If your child is old enough to understand, please explain what will happen before, during and after surgery using familiar terms.
Pre-operation Checklist
- Mark your calendar clearly with the date, time and arrival time for your child's surgery. Surgery for patients who arrive late may have to be rescheduled. Please make arrangements for reliable transportation.
- Be sure you understand the eating and drinking instructions. If you don't follow these directions, surgery may be postponed.
- Let us know as soon as possible if your child develops a rash, fever, flu, cold, diarrhea, vomiting or has been exposed to any communicable diseases like COVID-19, chicken pox, measles or mumps. Surgery may have to be postponed if exposure was recent.
- To avoid potential bleeding problems, do not give your child aspirin, Motrin, Advil or ibuprofen for five days before surgery, except as prescribed by your child's surgeon. If your child does take any of the medications listed by mistake, please let us know. These medicines interfere with the blood's ability to clot. Your child's surgery may have to be rescheduled. Your child may take Tylenol, an aspirin-free medicine, for pain or fever reduction.
- Once your child's surgery has been scheduled, schedule a preoperative physical with your pediatrician or family doctor before surgery. This ensures that your child has no illnesses that may complicate surgery or anesthesia. It also allows your child's doctor to know when your child is having surgery. The doctor must complete the preoperative history and physical form that you received when you and your child last visited us in neurosurgery. Bring this completed form with you on the day of your child's surgery.
- Before surgery, a nurse or technologist will take a sample of your child's blood. Your child’s pre-operative labs can be done at any Cincinnati Children’s outpatient lab location. Appointments are not necessary. Arrangements can be made for families that live out of town to have the testing done closer to their home.
- Blood transfusions are often needed for children who have surgery for craniosynostosis. If your child's surgeon has told you that your child will need a blood transfusion for surgery, you can use the blood provided through Hoxworth Blood Center or through Hoxworth's Directed Donor Program. Hoxworth believes that the blood from regular donations is as safe as blood from directed donors. This is especially true if the directed donor is not the parent or immediate relative. Women who have given birth within the past six months cannot donate blood. If you are interested in the Directed Donor program, please call Hoxworth at 513-451-0910 or 800-830-1091.
- Please follow the bathing instructions that were reviewed with you by your nurse.
- Arrive at the hospital two hours before the scheduled time of surgery. Bring your child's overnight bag, the form completed by your child's pediatrician and your insurance card. If you plan on spending the night with your child while they recover with us, remember your own overnight bag.
- For patients having minimal access craniosynostosis surgery, your child will see a helmet specialist to be fitted before surgery.
How Do I Prepare My Child for Craniosynostosis Surgery?
Children Younger than 12 Months
- Stop solid baby foods, cereal and formula five hours before arriving at the hospital. Limit your child's diet to clear liquids.
- Stop clear liquids and breastfeeding three hours before arriving at the hospital.
Children Older than 12 Months
- Stop solid foods, milk, juices, candy and gum seven hours before arriving at the hospital.
- Stop clear liquids one hour before arriving at the hospital. Clear liquids are fluids you can see through:
- Water
- Pedialyte
- Jell-O
- Sprite
- Popsicles
- Clear broth
- Breast milk (but not formula)
Taking Medication
If your child takes daily medicine for the heart, asthma or seizures, they need to take the medicine the morning of surgery. Your child should take medicine with a small sip of clear liquid. Do not give antibiotics the morning of the surgery as they can cause nausea and vomiting.
If you have questions about your child's medicine, please call the neurosurgery office at 513-636-4726.
After Surgery
Depending on the type of surgery, your child may go to our pediatric intensive care unit (PICU) right after surgery. Your child's head will be fully wrapped with a turban dressing. Their head will be elevated. Sticky pads on your child's chest give readings to monitor the heart. A red light on your child's finger or toe tells us if the blood is getting enough oxygen. Your child will get needed fluids and medications through their IV. A blood sample will be taken to make sure your child is recovering as well as expected.
Your child will be sleepy the first day. They will be able to take a bottle the evening of the surgery. Two days after surgery, any remaining head dressings will be removed.
When their blood counts are stable, your child will move from the PICU into a regular room. At this point, you'll be able to hold your child. Their head and face will be swollen. The worst swelling happens two to three days after surgery. Often their eyes swell shut. This may frighten your child. Parents' voices and familiar music and sounds help comfort your child.
Going Home
You can take your child home on the fourth or fifth day after surgery if they had cranial vault reconstruction. Most children who have minimally invasive craniosynostosis surgery leave the hospital in one to two days after surgery. Head and face swelling will get better. The swelling around the eyes will come and go for two to three more weeks.
If your child sleeps face down, they will wake up with their eyes swollen shut. After one or two hours, this swelling will go away. To decrease swelling, we recommend that you put your child to sleep on their back for several weeks after surgery. If they roll over, reposition the child onto their back. Keep their head up.
Once home, your child may have the days and nights confused. To help them adjust to a more normal schedule, provide periods of play during the day in a bright room.
- Pain: Your child will be sent home with pain medicine. When they are discharged, you will be given instructions on how and when to give these medicines.
- Diet: Once your child is home, they can go back to a regular diet. There are some restrictions right after surgery. Since your child will be spending several nights with us, we will restrict the diet as needed during that time.
- Wound Care: You should wash your child's incision (cut) each day with a mild shampoo (see home care instructions for a child with cranial incision lines). Do not use cream rinse or any lotions on the head until the skin heals completely. Cover your child's head when going outside. The incision gets sunburned very easily.
- Activity: Your child may return to usual activity levels when you go home. Remove low-lying furniture with sharp edges, such as coffee tables, to prevent possible head injuries. Your child should stay home from school and daycare until the first follow-up visit.
- Bathing: Your child should shower with mild baby soap or shampoo daily. A sponge bath with mild soap followed by rinsing with clean water is fine for smaller children. Do not allow the wound to soak in the bath tub.
If your child needs to wear a helmet after minimally invasive surgery, they can start wearing the helmet about four days after the procedure. Your child’s doctor and helmet specialist will give specific instructions on when to start the helmet therapy. They will tell you how long your child should wear the helmet each day.
Follow-Up Care
The first follow-up appointment is typically two weeks after the surgery. This appointment will either be with an advance practice provider or your child’s surgeon. Three months after surgery, your child will have another follow-up appointment with the surgical team.
These appointments may be scheduled before you take your child home from Cincinnati Children's.
If your child has a helmet, follow-up will be determined by the helmet specialist. Most children will go to their first helmet follow-up appointment 7 to 10 days after surgery.
Call Your Child's Doctor If:
Call the neurosurgery care team at 513-636-4726 if you are concerned with your child's progress after surgery.
Please call if your child has:
- Temperature greater than 100.4 degrees Fahrenheit
- Bleeding or drainage from the incision
- Redness, swelling, or pain at the incision
- Confusion or excessive sleepiness
- Severe headache
- Excessive vomiting (when nothing stays down)
Our office hours are 8 am to 4:30 pm, Monday-Friday. On evenings and weekends, please call the main hospital line at 513-636-4200 and ask to have neurosurgery on-call doctor paged.
