Waiting for the initial consultation can take a toll emotionally. The anticipation, the long nights of internet research, will my baby need surgery, will the doctor see what I see? This is just some of what goes through your mind as you try to understand and accept the possibility of the diagnosis.
There are many questions that are important to ask and they are as follows:
Make sure all of your questions are answered - ask until you feel comfortable. It is important that you not feel intimidated and that you not feel rushed. Get answers to your questions. Write EVERYTHING down. Bring somebody with you if you can, the more ears - the better.
Although this term may sometimes be used in medicine to explain to a family that the synostosis at the time, is not and may not cause any neurological concern, the term cosmetic means just that. At this time it is "cosmetic in nature" try not to get bogged down by the use of this term.
A procedure is cosmetic when intended to change a physical appearance that would be considered within normal human anatomic variation. Cosmetic services are often described as those that are primarily intended to preserve or improve appearance.
Reconstructive surgery is typically performed to improve function, to make a deformity appear more normal, or to alleviate health complications associated with the abnormality.
There is an incidence of raised intracranial pressure in non-syndromic synostosis. Read More.
How can you tell?
Well, it's not always a simple answer but the most obvious characteristic of a child with Craniosynostosis will be an abnormal head shape and/or an asymmetrical shape to the child's face.
This abnormal shape of the baby’s head depends on which suture fused too early — each type of craniosynostosis has its own characteristic shape.
A ridge formed on the suture line may be an indicator especially if associated with an abnormal shape to the skull.
We always recommend that an infant be seen by a specialist, either a craniofacial plastic surgeon or a pediatric neurosurgeon that specializes in Craniosynostosis in order to know for certain.
You wait weeks, sometimes months to have a consultation. Your child is diagnosed with Craniosynostosis and now you start to ask yourself....does my baby really NEED this surgery?
There is a long and short answer for this and it is as follows:
The short answer is - YES. If your child has been diagnosed with a fused suture, you should strongly consider surgery as the option for your child. Craniosynostosis is a progressive deformity. This means as your child's brain grows, the skull will need to expand. When there is a synostosis the skull is unable to expand in the way that it is supposed to. This "can" lead to a variety of future concerns for your child if left untreated.
Sometimes you will hear the words "cosmetic" and/or "elective" - words like these can cut you like a knife and just about push you to your breaking point.
The term cosmetic will typically come from the mouth of the neurosurgeon. While this term is hard for a family to digest, one must take into consideration what this means. This means that at this time, from what the surgeon can tell, the baby has a deformity. The skull shape is compromised but there is nothing going on inside of the brain. This is GOOD NEWS!
But, this should not have you assume that this now means that you should not consider surgery. While the majority of Craniosynostosis cases are just that, "cosmetic in nature"(we use this term loosely) - no one can guarantee that it will end there without giving the sensitive, developing brain room to grow.
Craniosynostosis repair is a reconstructive procedure in that it repairs and restores the skull to it's intended shape and allows for future growth and development of the brain.
On occasion there will be a case of a partially fused suture (mild case) or a Metopic ridge and there are varying opinions on whether the risk of surgery will outweigh the benefit. Read more on this topic here.
This is always a tough one.
Post-op children who have the minimally invasive procedures will typically require a cranial remodel orthosis for up to one year following surgery. This helmet is used to encourage growth to the intended skull shape.
It is extremely important that a family uses a well-qualified orthotist for this helmet. The orthotist must be trained in post-operative cranial bands. If you are unsure, please contact us for a referral.
You have the ability to interview an orthotist prior to making a decision.
Some of the questions that you may want to ask are:
Have you treated post endoscopic craniosynostosis children before?
Which surgeons do you work with?
Which Cranial Band brand do you use?
How will you take the measurements for my baby's head?
What is your approval rate with my particular insurance? Will you appeal if necessary? Do you have a payment plan if I am denied?
What is your background? Have you trained specifically for cranial bands? Are you a CPO?
How frequently will you see the baby for follow ups?
What if I have a problem? Is there an after hours number? How soon will you see my child if we are having a problem? What if you are not available - is there someone else who will cover for you?
Can you explain the measurements to me so that I understand them?
How many post-op children require a second helmet in your experience?
Can you give me an idea or show me a picture of what my baby's helmet will look like?
How do I clean and care for the helmet?
What happens if my baby seems to have a red spot or is uncomfortable?
Ask - Ask - Ask...... you must be comfortable with the orthotist.
The real question is, does my baby require treatment for this condition?
Some babies develop positional plagiocephaly while still in the uterus. In some cases, this is caused by the baby’s preference for a head positon. In others, multiple births can force the baby’s head to one side, creating positional plagiocephaly. Position, then, is the most common cause of this disorder.
Some babies prefer to look in one direction, or tilt the head to one preferred side, resulting in a limited range of motion due to tight neck muscles. This condition is called torticollis.
In all instances, your baby should be properly evaluated by your pediatrician. If your child is less than 4 months old and seems to be developing a flattening or asymmetry, your doctor may recommend repositioning or physical therapy. If this conservative type of treatment does not correct the condition, you may need to visit a specialist, such as a craniofacial surgeon or neurosurgeon, for evaluation, treatment and a cranial orthosis (cranial band or helmet). The specialist can explain all treatment options and help you make an informed decision.
If you decide to go with a Cranial Remodel Orthosis (CRO) it is important that you ask questions.
Causes of Deformational Plagiocephaly
Torticollis: a relatively common condition in newborns, presents between birth and 3 months. It is caused by the tightening of one or both of the neck’s main muscles, forcing the baby to turn or tilt the head in one position. The result is a flattening of the same side of the head.
You may notice that your baby tilts his head in one direction, looks over your shoulder instead of following you with her eyes, has difficulty breastfeeding on one side, and becomes frustrated when attempting to turn his head to look at you.
Torticollis is often associated with deformational plagiocephaly since the baby has difficulty lying comfortably in all positions. Physical Therapy and a home exercise program offer conservative treatments that can begin immediately upon diagnosis.
Your pediatrician can evaluate your infant for torticollis and, if present, may suggest neck stretching exercises, which you can practice with your baby at home. For example, you’ll be taught how to encourage your child to turn his head in both directions to loosen tight neck muscles, and tighten up loose muscles. Don’t worry! Your baby cannot hurt himself by turning his own head.
One effective exercise, affectionately called “tummy time”, can be safely tried at home as a treatment for a baby with both torticollis and a flat head:
Lay your baby on his or her stomach briefly while awake. Position your baby with his or her head turned away from you. To encourage your baby to turn towards you, talk or sing to him or her. This helps to strengthen baby’s neck and shoulder muscles, as well as allowing your little one to use those muscles needed for early crawling. Practice this exercise several times daily, for a few minutes each time.
If your infant’s condition doesn’t improve with stretching exercises, or symptoms worsen, contact your pediatrician.
In more severe cases, your doctor may recommend physical therapy for additional treatment.
In particular, avoid substituting non-sleeping devices, such as car seats, as primary sleeping areas. These do not allow for the baby’s natural movements, creating risk for the development of deformational plagiocephaly.
No one person can guarantee that your child's head will self correct. This causes a great deal of concern for parents. The choice is always up to the parent but insurance qualifications may prevent you from feeling that way. It is important to advocate for your child.
If your infant is four months or older and repositioning has not made significant improvement to the shape of your infant's head, it may be time to consider orthotic treatment.
It is EXTREMELY important that you find a qualified orthotist. The orthotist should regularly treat infants with deformational plagiocephaly as well as use the newer technique for scanning the baby's head shape.