The Facts About Craniosynostosis: A Mom’s Must-Read

Dear Moms,

If you’ve ever noticed that your baby’s head seems to be shaped differently than other babies, or if you’ve noticed that the soft spot on your baby’s head is closing up too soon, you may have concerns about craniosynostosis. This condition, in which the bones in a baby’s skull close up too early, can be scary and overwhelming to learn about. But fear not, because we’re here to give you the facts and reassure you that with the right knowledge and care, you and your baby can navigate this condition with grace and strength.

What is Craniosynostosis?

Craniosynostosis is a condition in which one or more of the sutures in a baby’s skull close up too early, before the brain has fully grown. This can result in an abnormal head shape and, in some cases, increased pressure on the brain. It’s important to note that craniosynostosis is not caused by anything the mother did during pregnancy, and it is not preventable. It is simply a matter of how the baby’s skull formed in the womb.

How is it Diagnosed?

If you have concerns about your baby’s head shape or the soft spot closing too early, it’s important to bring it up with your pediatrician. They may refer you to a pediatric neurosurgeon or a craniofacial team for further evaluation. Diagnosis typically involves a physical exam, imaging tests such as a CT scan or MRI, and in some cases, genetic testing. The sooner craniosynostosis is diagnosed, the better, as early intervention can lead to better outcomes.

Treatment Options

The good news is that craniosynostosis is treatable, and the earlier it is addressed, the better the outcome. The main treatment for craniosynostosis is surgery to separate the fused skull bones and allow the brain to grow properly. This surgery is usually done within the first year of life. The specific approach and timing of the surgery will depend on the severity and type of craniosynostosis, as well as the recommendations of the medical team.

Aftercare and Follow-Up

After surgery, your baby will need gentle and loving care as they recover. You’ll need to follow the post-operative instructions provided by the medical team, which may include specific feeding and positioning guidelines. It’s also important to attend all follow-up appointments to monitor your baby’s progress and address any concerns that may arise. With the right care and attention, most babies recover well and go on to live healthy, happy lives.

Support for Moms

As a mom, it’s natural to feel worried and anxious about your baby’s health, especially when they need surgery. It’s important to lean on your support system during this time, whether that’s your partner, family, friends, or a support group. Talking to other moms who have been through similar experiences can be incredibly comforting and reassuring. Remember that it’s okay to ask for help and take care of yourself during this process.


Moms, if you have concerns about your baby’s head shape or the soft spot closing too early, trust your instincts and talk to your pediatrician. Craniosynostosis is a manageable condition with the right medical care, and your love and support will make all the difference for your little one. You are not alone, and there are resources and support available to help you through this journey.


Q: Is there anything I could have done to prevent craniosynostosis?

A: No, craniosynostosis is not preventable and is simply a matter of how the baby’s skull formed in the womb. It is not caused by anything the mother did during pregnancy.

Q: Will my baby have lasting effects from craniosynostosis?

A: With proper diagnosis and treatment, most babies go on to live healthy, happy lives without lasting effects from craniosynostosis.

Q: How do I find a support group for parents of babies with craniosynostosis?

A: Your pediatrician or the medical team treating your baby can often provide information on local or online support groups for parents facing craniosynostosis.