What Every Parent of a Baby Born with Sturge-Weber Syndrome Needs to Know
Many people have birthmarks. Some birthmarks are more worrisome or bothersome than others. Aside from any self-esteem issues of having a birthmark, one type of birthmark, in particular, may indicate a serious health problem. That type of birthmark is called a port wine stain. Based on statistics, three out of every 1,000 babies are born with this type of birthmark.
Port wine stains are deep red in color due to excessive capillary action that occurs during pregnancy. Sometimes, the excessive capillary action can also involve more than just the skin, especially if the birthmark is on the face. If so, the baby may have a condition called Sturge-Weber syndrome. Here's what you need to know if your baby who was born with a port wine stain.
What Is Sturge-Weber Syndrome?
Excessive capillary action during pregnancy causes extra blood to turn the skin red. In severe cases, the tissues underneath the skin can also be overladen with extra blood. This can involve the trigeminal nerve and/or brain. The trigeminal nerve is partly responsible for facial sensations and motor functions, including the eyes and mouth. If the trigeminal nerve is involved, your child may at some point in their life develop serious eye conditions, such as glaucoma. If the brain is involved, your child may have neurological symptoms, such as seizures, and learning and behavior difficulties that are similar to ADD/ADHD as well as bipolar disorder.
How Is Sturge-Weber Syndrome Diagnosed?
Diagnosis for Sturge-Weber syndrome involves a wide range of imaging to determine whether or not the excessive capillary action affected the underlying tissues, trigeminal nerve, and brain. Your pediatrician should order these tests as soon as possible so a proper diagnosis can be given as there are three types of the syndrome, with each type involving different areas and tissues. Due to the sensitivity of the imaging equipment, your newborn will need to be perfectly still in order to obtain clear images, which may result in repeated attempts at getting imaging done, especially if you wait until your baby is a bit older. Newborns do have a propensity to remain still for longer periods of time than older babies.
Is the Condition Fatal or Debilitating?
Without a doubt, you are likely wondering if Sturge-Weber syndrome is fatal. You will be happy to learn that, according to Medical News Today, Sturge-Weber syndrome is not fatal. However, babies with the condition often develop neurological problems that are progressive. Severe cases of Sturge-Weber may lead to disability status, particularly if the condition progresses rapidly.
Fortunately, treatment to reduce symptoms of the condition can slow down the progressive nature of the condition. Treatment depends on which specific type of syndrome is diagnosed and typically involves medication, eye drops, and physical therapy. Since learning difficulties and behavior problems may occur, appropriate and ongoing care from a mental health standpoint may also need to be addressed.
What Specialists Will Your Child Need?
As you can see, your child will need to be under the care of a number of medical and mental health professionals if he or she is diagnosed with Sturge-Weber syndrome, including an ophthalmologist, a neurologist, a dermatologist, plastic surgeons, physical therapists, psychotherapists, and psychiatrists. Due to the number of different medical and mental health professionals your child may have, it's important to have a good pediatric nurse case manager to coordinate all of the tests and treatments as well as to act as a liaison between you and the care providers. Most children's hospitals have pediatric nurse case managers to assign to children to help parents such as yourself. Speak with your baby's pediatrician for more information.