Frequently Asked Questions about craniosynostosis

What are sutures?

What happens when sutures fuse too early?

How is craniosynostosis diagnosed?

Why is it important to diagnose craniosynostosis early?

How does helmet therapy work after craniosynostosis surgery?

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More Frequently Asked Questions

How long will my child be in the hospital? The length of a hospital stay after surgery depends on the type of procedure performed and how quickly your child recovers. Typically children are only in the hospital for one night after the endoscopic procedure and two or three nights after an open procedure.  Once your child is eating, drinking, and voiding normally, and has been transitioned from IV to oral pain medication, he or she will be discharged from the hospital. Before you leave the hospital, we will give you instructions about recovering at home and scheduling your follow-up appointments.  

What will my child’s scar look like?
It depends on what kind of craniosynostosis surgery your child had. Children who have endoscopic suturectomies have an incision that’s 3 to 4 cm in length (about an inch and a half) over their affected suture. Those who have cranial vault reconstruction have a zig-zag incision from ear to ear. All these incisions are designed to blend in once your child’s hair grows back over the incision line. See About the Scar for photos and additional information.

How do I care for my child’s incision?
The incision is closed with dissolvable sutures, and the incision will be covered with a head wrap to help with swelling after surgery. The head wrap will be removed a day after surgery, or right before your child is discharged. Start washing your child’s hair on the third day after surgery and shampoo it every day after that. Use unscented baby shampoo (Aveeno or other unscented shampoo). Do not wash directly on the incision or scrub the incision line. Allow the soapy water to run over the incision and pat dry. You should apply Bacitracin once per day to the incision. You will bring your child in to see the nurse practitioner within one week of surgery to make sure the incision is healing well. You will also have a follow-up with the plastic surgeon and neurosurgeon. Expect to come to the office for regular follow-ups until one year after surgery.

Will my child need a blood transfusion? How can I direct donate?
Children who have the endoscopic procedure generally do not need blood transfusions. Some children who have the open cranial vault reconstruction do need blood transfusions during the surgery. Families may choose to have blood donated directly to their child from a parent or close family member, but it is important to know that parents are not necessarily a match for their child. If the donated blood is not a match, the blood will not be able to be used during surgery and will be discarded. 

The process of direct donation must be started approximately four weeks before surgery. Please inform the craniofacial team as well as the NewYork-Presbyterian Blood Bank at 212-746-4440 (ask for Gail or Novolette). The parent/donor must undergo a blood screening test for a virus and antibodies that can be found in blood, as well as for blood type. You must know your child’s blood type, and your child may need an additional blood draw. Once screening has occurred, the donor will go to a blood donation center to donate, at least one week in advance of surgery. 

If you don’t wish to direct donate, or if your blood is not a match, we will use blood that comes directly from the New York Blood Center, one of the largest independent, community-based, nonprofit blood centers in the world. The NYBC provides blood products to nearly 200 hospitals in New York, New Jersey, and surrounding states and is extremely safe to use.

Will my child be in pain after the surgery? What medications are used for pain?
All patients experience at least some pain after surgery, since it is the body’s natural response. Today we have many ways to manage that pain in order to keep your child comfortable. Immediately following surgery, your child will be provided intravenous pain medications to ensure that the pain does not become severe. Controlling pain helps a patient recover more quickly, and taking the medicine regularly (including at night) is an important part of initial pain management.

As your child progress through the recovery period, Tylenol is often given both in the hospital and after your child is discharged, to prevent pain. You can give your child Tylenol every four to six hours, no more than five times per day. Tylenol is often required twice a day for a week for some children after a cranial vault reconstruction. Talk to your medical team about what dose to give your child. Instructions will be provided on discharge.

Will my child look different immediately after surgery?
Swelling is a normal part of surgery, and your child may have significant swelling of the face and over the eyes. Swelling is usually worst on the second day after surgery; mild swelling is part of the expected post-operative recovery and may persist for weeks.

A baby who has had an endoscopic suturectomy will wear a helmet to guide the skull bones into place following surgery – meaning your child’s head shape will not look different immediately after the surgery. The shape will be corrected gradually, as the brain expands and the helmet does its job. 

Children who have cranial vault remodeling will look different right after the surgery, since the skull bones have been surgically moved into the correct position.

Remember that the goal of any craniosynostosis surgery is to help your child attain a normal head shape while alleviating potential detrimental effect of craniosynostosis. Whichever option you choose, and whether the correction is immediate or more gradual, the end result is the same: a normal head shape. 

How many operations like this have you done?
At Weill Cornell Medicine Brain and Spine Center we perform surgical corrections for craniosynostosis on a weekly basis, and we have been doing them for decades. We are also among the most experienced surgeons when it comes to the minimally invasive endoscopic suturectomy procedure – in fact, other neurosurgeons and plastic surgeons from around the world come to Weill Cornell Medicine for training in this procedure! Our multidisciplinary approach means that your child will have the benefit of experienced neurosurgeons, plastic surgeons, and specialists in related disciplines who may contribute to your child’s treatment. This allows us to offer many different treatment options (as opposed to a single approach), to match exactly what you child needs. 

What does the follow-up schedule look like?
Children who have the endoscopic suturectomy will visit the orthotist regularly (typically weekly or every other week) while wearing the corrective helmet. The helmet will be replaced at intervals as the child’s head grows to ensure a proper fit. You will also visit the neurosurgeon and plastic surgeon as an additional quality control to ensure we are obtaining the correct shape and to determine when your child can be graduated from their helmet.  Children who have open cranial vault remodeling will be seen approximately one week after surgery to assess initial healing, and then a few more times during the first year following surgery. 

What are the risks of not doing surgery?
Left untreated, craniosynostosis can have significant cosmetic effects and create serious deformity. Your baby’s brain continues to grow rapidly, and a fused suture prevents the skull from expanding in that direction to accommodate the growth. The skull then expands in the only direction it can — the direction in which the normal sutures allow for movement. Over time, the abnormality in the child’s head shape becomes more pronounced.

In addition, serious cases of craniosynostosis can cause health problems as well if they are not corrected. Fused skull plates that prevent the brain from growing and expanding can create pressure on the brain that can lead to seizures and permanent brain damage. 

The only cure for craniosynostosis is surgical correction. Although every surgical procedure has some risk, the corrective surgery for craniosynostosis is very safe. The risks of not doing the surgery are considerable.

Won’t my child be uncomfortable in a helmet?
Most children adjust easily to the helmet, which is usually delivered to you within seven to ten days of the surgery. Over the next week you will gradually increase the time your child wears it. A helmet should not be uncomfortable after a few days, and if your child does seems uncomfortable in the helmet, it may need to be re-fit, which is common with the first helmet. Your orthotist will work with you to make sure your child is comfortable in the helmet. Once your child is in an appropriately fit helmet he or she will not be uncomfortable.

Many parents like to decorate the helmet to make it more fun for everyone, and there are even professionals who can decorate helmets for you.

Frequently asked questions about endoscopic suturectomy for craniosynostosis