[ krā′nē-ō-sĭn′ŏs-tō′sĭs ]
The third blog in this series is on craniosynostosis, which is a serious condition related to plagiocephaly. I titled this according to the phonetic spelling so that you can sound super smart to all your friends...you're welcome :) This is in hopes of empowering YOU, the parents and caregivers. My mission in starting develoPT was to get access to high-quality healthcare and education for ALL children and families. I want to bring more attention to these conditions and possibly help some of you prevent issues with your little one down the road.
Craniosynostosis is a condition where the sutures (flexible, fibrous joints between plates of bone) in a baby’s skull close too early (usual age is 2-3 years). This causes issues with typical brain and skull development. The baby’s head grows into an abnormal shape (stops where the sutures have closed, expands in the other areas). If left untreated, this can lead to SERIOUS problems.
-Head deformities (can be severe and permanent)
-Facial abnormalities (uneven forehead, eyes, jaw)
-Increased head circumference
-Increased pressure inside the head
-Missing, full, or bulging fontanelle (soft spot on top of baby’s head)
-Very noticeable blood vessels in the scalp
-Raised, hard bony ridges along closed suture lines
-Sleepiness or decreased alertness
Most often occurs randomly and for unknown reasons (nonsyndromic craniosynostosis), but some types are highly associated with genetic disorders (syndromic craniosynostosis). Craniosynostosis can also involve singular sutures or more rarely, multiple sutures of the skull.
-Most common type
-Early closing of the sagittal suture (front to back in the middle of the top of the head)
-Appears as a long, narrow head and broad forehead
-Boys affected more than girls
-Second-most common type
-Early closing of ONE side of the coronal suture (ear to ear on the top of the head)
-Appears as a flattened forehead on the affected side, and a prominent forehead on the other side
-May have differently shaped eyes and nose pulled toward the affected side
-Girls affected more than boys
-One of the rarest types
-Early closing of the lambdoid suture (runs along the back of the head)
-Appears as flattening on the back side of the head
-Early closing of BOTH sides of the coronal suture (bicoronal synostosis)
-Appears as a broad and short head
-One of the the rarest types
-Early closing of the metopic suture (goes from the nose to the sagittal suture at the top of the head)
-Appears as a triangular-shaped head; narrow in front and broad in back
-May have a prominent ridge running down the middle of the forehead and closely-spaced eyes
May be present at birth (congenital) or observed later in the baby’s first year; can be diagnosed from:
-Thorough prenatal and birth history
-Relevant family history
-Thorough physical examination and diagnostic testing
-Check of developmental milestones (may lead to further testing and follow-up for neuromuscular or genetic disorders)
-Measurement of head circumference
-Palpation (feeling) along baby’s head for unusual ridges or fontanelle abnormalities
-May need imaging tests (X-rays, ultrasounds, CT scans, MRIs) or genetic testing
Goals for treatment focus on relieving pressure inside the head and allowing the brain to grow, along with correcting skull and facial deformities. Various factors go into choosing the correct path of treatment.
Often, the main treatment for craniosynostosis is surgery. That being said, sometimes in very mild cases, surgery may not be required, and cranial molding helmets can be used to correct head shape.
Because every baby is different, this condition can present very differently as well. Some babies have mild cases, and are otherwise healthy. Others have severe cases along with developmental delays and intellectual disabilities due to restricted brain growth or genetic syndromes that affect brain function.
***First off, early detection and treatment is KEY!! (Are you noticing a trend here in the importance of early intervention???)
-Find a healthcare provider and tell them your concerns
-After confirmation of craniosynostosis, a specialized healthcare provider will see your baby frequently to track progress and help develop a plan (most likely surgery before age 1 year while the skull bones are soft)
-This plan could include:
Endoscopic surgery (minimally invasive) before age 6 months to open sutures for normal brain and skull growth;
Traditional surgery age 6 months or older to correct skull shape;
Cranial molding helmet therapy to reshape skull
-Seek out early intervention services (physical therapy, occupational therapy, speech-language therapy) to assist with any developmental delays or to help boost existing skills
-Find a support group of parents that are in the same sort of situation
-Address self-esteem issues head-on when the child is old enough to understand and see differences between peers and themselves
-Residual effects of this condition varies widely due to severity, complexity, and comorbid conditions
-Genetic counseling may be recommended to detect hereditary disorders
-Frequent medical visits will be necessary to make sure that skull and brain growth are progressing well
Knowledge empowers YOU to help your baby embrace their fullest potential! If you would like a helping hand to guide you along the way, and get a customized evaluation for your sweet babe, please reach out to me on my website, www.develoPTpeds.com.
In the meantime, I have put together a visual that summarizes the most important aspects of craniosynostosis and treatment. It is awesome to quickly refer to, even with a crying baby ;) You can access it HERE!