If your child has been diagnosed with Arnold-Chiari malformation, you would quite certainly be devastated. However, it may give you some solace to know that, although a rare condition, there are many parents like you around the world who have children with this malformation.
Doctors believe that infants are born with Chiari malformation, and the symptoms can manifest at any age. However, the symptoms are most commonly observed during childhood or when the person reaches his or her 30s. Some of the symptoms that children experience include the following:
If the child exhibits no symptoms, treatment would not be needed. In children who have mild symptoms that are not progressive, doctors often suggest a conservative management approach that could include physical therapy or treatment for headaches. If the symptoms are severe or the child has syringomyelia, doctors could recommend a surgery to alleviate the pressure exerted on the brain and the spinal cord, thereby facilitating normal flow of cerebrospinal fluid.
The treatment varies across children and is usually decided by the doctor based on multiple factors. Some of the things that the doctor takes into consideration include:
As a parent, you will be instructed by the doctor to observe your child carefully for any changes in neurological patterns. You will have to be vigilant about the following:
It is best to keep a proper journal and note down even the smallest things you notice, so that you can inform the doctor when you take your child for a checkup.
Usually, when the child is born with Arnold-Chiari malformation, doctors will not be able to give you details about all the problems associated with this condition. Many of the issues will manifest as the infant grows and develops. Your child will have to be examined frequently by the doctor, as well as undergo diagnostic testing. The testing and examination are necessary to monitor your child's head as he or she grows.
In addition, your doctor will also offer you guidance to make your child comfortable and improve his or her health.
If you intend having another child in the future, it is best to take genetic counselling to understand the possibility of recurrence of Arnold-Chiari malformation.
Being a parent of a child afflicted with Arnold-Chiari malformation can be tough on your nerves. It is best to join a support group, as it will help you cope with your child's condition and also allow you to deal with the emotional issues. Speak to your child's doctor about it for more insight on the condition.