Ask the Doctor
Earl Gage, MD
Question: My son was diagnosed with sagittal craniosynostosis at 7 months. At 14 months he had sagittal strip craniectomy, with no helmet therapy afterward. He is now 5.5 years old and doing great. He had regular checkups every few months after his surgery, then every year. In 2014, at his annual checkup, they said he was doing so great he didn't have to come back for two years. His checkup will most likely be in May and I'm a little worried because his soft spot still hasn't closed up all the way. In the years past, his doctors have always reassured me that it's no big deal and that it will most likely close and that if it doesn't it's no big deal. They have said that if it never closes up, it's not a problem unless it bothers him aesthetically. I'm just scared that when we go this year for his checkup that they will say he needs surgery again. What are the odds? Is it really necessary to put in a plate if there is still not enough bone growth? I hear a lot of conflicting stories in all of the forums.
Answer: When craniosynostosis surgery is done in the first 12-18 months of life, babies have an amazing capacity to heal. Most of the time, soft spots will fill-in with bone within a year or two after skull surgery. Small residual soft spots are common and are often only visible by CT or MRI scans. Larger soft spots that you can see or feel are less common but still occur.
The primary reasons to consider patching a soft spot are for brain protection or for appearance concerns. A soft spot, in and of its self, is not dangerous. It’s the theoretic risk of injury to the brain in the event of accidental trauma that worries surgeons. Whether or not to patch a soft spot surgically will depend on the age of a child, how large the soft spot is, how active a child is in sports or head contact activities, whether the soft spot causes an appearance concern and whether it is continuing to diminish in size on its own.
Generally speaking, I expect improvement in a soft spot in the first few years following surgery. In the toddler years, therefore, it is not common to recommend patching a soft spot. As a child approaches school age, however, the chances are good that the soft spot may not improve further. This is because the skull’s ability to make new bone and fill in soft spots is best in infancy and diminishes over time. Your child’s surgeon should have a good idea whether the soft spot is getting smaller or not based on your yearly exams and imaging studies. It makes sense to me that if the soft spot is diminishing in size, it may be best to continue to wait on surgery, regardless of your child’s age.
If your child participates in contact sports, rough play or other activities where the head may get hit, sometimes patching a soft spot may be recommended to protect the brain. Opinions will vary from surgeon to surgeon regarding the size of defect that requires patching. It is my opinion that any defect larger than a quarter should be repaired if it is not getting smaller on its own. Defects smaller than this are not likely to pose a significant risk for brain injury.
If the soft spot causes an appearance concern, then this may be another reason to consider repair. However, in this instance, the decision to patch a soft spot is highly individualized and may be influenced by the level of family concern, the child’s level of concern and the overall health of the child, among other factors. There is no one-size-fits-all approach. If a child is healthy, thriving and has no concerns about appearance, I often elect to wait on surgery as long the defect is not so large that I am concerned about brain protection.
I agree with you that deciding to sign your child up for another operation can be scary. If your child is doing well, appearance is not a concern and the soft spot is relatively small or is diminishing in size, surgery probably is not necessary. If the soft spot is large, your child is older and not likely to fill it in, or if appearance is a concern, then surgery may be a reasonable option. Hopefully, these general guidelines will be useful as you meet with your child’s surgeon and weigh the options with your team.
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