Sturge-Weber Syndromeenparentshttps://kidshealth.org/EN/images/headers/KH_generic_header_04_2.jpgSturge-Weber syndrome is a problem with the way blood vessels grow in the skin, eyes, and brain. When a baby is born with a port-wine birthmark on the face, doctors will look for other signs of Sturge-Weber.Sturge-Weber, birthmark, birth mark, birthmark on the face, port wine, port-wine, stains, port wine stains, port-wine-stains, port wine birthmark, angioma, angiomas, seizures, migraine, headaches, glaucoma, baby looking mostly in only one direction, 07/26/201907/30/201907/30/2019Carol M. Greene-Roethke, APRN07/23/20191d914642-54b2-49eb-bc4b-df58c6d17da4https://kidshealth.org/ws/RadyChildrens/en/parents/sturge-weber-syndrome.html/<h3>What Is Sturge-Weber Syndrome?</h3> <p>Sturge-Weber syndrome is a problem with the way blood vessels grow in the skin, eyes, and brain. Blood vessels grow too much and form growths called <strong>angiomas</strong>:</p> <ul class="kh_longline_list"> <li>An angioma (an-jee-OH-muh) in the skin is a <a href="https://kidshealth.org/ws/RadyChildrens/en/parents/birthmarks.html/">birthmark</a> called a <a href="https://kidshealth.org/ws/RadyChildrens/en/parents/port-wine-stains.html/">port-wine stain</a>. Babies with Sturge-Weber are born with port-wine birthmarks on their face or scalp.</li> <li>Angiomas that form in the brain can affect the blood flow to that area. In some children, this can lead to eye problems, seizures, or developmental disabilities.</li> </ul> <p>When a baby is born with a port-wine birthmark on the face, doctors will look for other signs to tell whether the baby has Sturge-Weber. Finding out early helps babies with the condition get the treatment and support they need.</p> <h3>What Are the Signs &amp; Symptoms of Sturge-Weber Syndrome?</h3> <p>The first sign that a baby might have Sturge-Weber is a birthmark on the face. The birthmark is called a port-wine stain because of its dark red color. Having a port-wine stain doesn't always mean a baby has Sturge-Weber. Most babies born with a port-wine stain on their face <strong>do not</strong> have Sturge-Weber.</p> <p>Other signs that a baby has Sturge-Weber are:</p> <ul> <li>seizures</li> <li>using mostly one hand for activities, like grasping</li> <li>looking mostly in only one direction</li> </ul> <h3>How Is Sturge-Weber Syndrome Diagnosed?</h3> <p>When there are signs a baby may have Sturge-Weber syndrome, the doctor will do an exam and ask about symptoms. Doctors often do some of these tests:</p> <ul> <li><a href="https://kidshealth.org/ws/RadyChildrens/en/parents/eeg.html/">electroencephalography (EEG)</a></li> <li><a href="https://kidshealth.org/ws/RadyChildrens/en/parents/genetics.html/">genetic testing</a></li> <li>an eye exam, usually done by an ophthalmologist &nbsp;</li> <li><a href="https://kidshealth.org/ws/RadyChildrens/en/parents/mri.html/">magnetic resonance imaging (MRI) scans</a></li> </ul> <h3>How Is Sturge-Weber Syndrome Treated?</h3> <p>Babies born with Sturge-Weber will have it all their lives. They will need to see doctors who can watch for and treat any problems, such as <a href="https://kidshealth.org/ws/RadyChildrens/en/parents/migraines.html/">migraine headaches</a>.</p> <p>Treatment depends on what problems a child has because of Sturge-Weber.</p> <h4>Port-Wine Stain Birthmarks</h4> <p>With Sturge-Weber, the port-wine birthmark is usually on the face, eyelid, scalp, or forehead. It may grow thicker and darker with time. Doctors can give babies laser treatments to help fade port-wine stains. Laser treatments work better in very young children than in older children, but they may not completely get rid of a port-wine stain.</p> <h4>Glaucoma and Other Eye Problems</h4> <p>Babies with a port-wine birthmark on the eyelid should see an eye doctor in the first few weeks of life.</p> <p>Sometimes a port-wine birthmark on the eyelids creates pressure inside the eye. This is called glaucoma. If it's not treated, it can lead to loss of vision. Eye doctors use medicines, lasers, and other treatments to reduce the pressure.</p> <p>A birthmark on the eyelid also may block a baby's vision or eye movement. Children with Sturge-Weber syndrome should have regular <a href="https://kidshealth.org/ws/RadyChildrens/en/parents/vision.html/">eye exams</a> throughout life. Finding eye problems early helps protect a child's vision.</p> <h4>Seizures</h4> <p>Many children with Sturge-Weber syndrome have <a href="https://kidshealth.org/ws/RadyChildrens/en/parents/seizure.html/">seizures</a>. These happen because of blood vessel problems in the brain.</p> <p>Doctors usually treat seizures with medicines. If medicines don't help, some children have surgery to help stop seizures.</p> <h4>Learning Problems</h4> <p>Some children with Sturge-Weber have learning problems or developmental delays. This happens when kids have angiomas in parts of the brain that affect learning.</p> <p>Kids with Sturge-Weber should have regular <a href="https://kidshealth.org/ws/RadyChildrens/en/parents/checkups.html/">checkups</a> to make sure they are learning, talking, and playing in ways that are right for their age. Finding problems early helps kids gain skills and do well. Some children may need <a href="https://kidshealth.org/ws/RadyChildrens/en/parents/speech-therapy.html/">speech-language therapy</a> or education therapy. Many get an <a href="https://kidshealth.org/ws/RadyChildrens/en/parents/iep.html/">individualized education program (IEP)</a> in public schools, free of charge.</p> <h3>What Causes Sturge-Weber Syndrome?</h3> <p>Babies are born with Sturge-Weber because a gene, called GNAQ, changes during pregnancy. This gene helps control the way blood vessels form. Experts don't know why the GNAQ gene changes. It is random and happens early in pregnancy. There's nothing parents can do to prevent it, and nothing they did caused it.</p> <h3>How Can Parents Help?</h3> <p>If your child has Sturge-Weber syndrome, the ways you can help will change as your child grows.</p> <p>When your child is still a baby:</p> <p><strong>Learn about Sturge-Weber.</strong> Talk to your child's doctor about how it might affect your child. Find out about treatments that can help.</p> <p><strong>Get the right care for your baby.</strong> Take your baby to see the specialists your doctor suggests. Make sure you don't miss any regular checkups. Get treatments that can help.</p> <p><strong>Get support.</strong> When your child is diagnosed with a medical problem, it takes time to adjust. Reach out to family and friends you feel close to. Share your feelings when you want to. Get support from your child's care team too. Talk with other parents of kids with Sturge-Weber.</p> <p><strong>Talk about it.</strong> It's OK to talk about your child's birthmark. When people ask, give a simple answer that's friendly, honest, and brief. &quot;It's a birthmark. She was born with it. Just like her curly hair, cute smile, and brown eyes.&quot;</p> <p><strong>Enjoy watching your baby learn and grow.</strong> Make plenty of time to play, cuddle, talk, and sing to your baby. Enjoy the special bond you share.</p> <p>As kids grow:</p> <p><strong>Help them see the birthmark as a natural part of their looks.</strong> It's OK to talk about it with your child too. When your child asks, you can say, &quot;You were born with it&nbsp;— it's called a birthmark.&quot; Be open and honest.</p> <p><strong>Show love and acceptance.</strong> Having Sturge-Weber doesn't mean your child will have a poor <a href="https://kidshealth.org/ws/RadyChildrens/en/parents/self-esteem.html/">self-image</a> or be bothered by how they look. But if there are times your child says he doesn't like his birthmark, be a patient listener. Show you understand and care. Let your child know how much you love every part of them.</p> <p>When you show plenty of love and accept your child, you help your child learn self-acceptance. When a child needs extra support, talking with a <a href="https://kidshealth.org/ws/RadyChildrens/en/parents/finding-therapist.html/">therapist</a> or meeting other kids who have Sturge-Weber can help too.</p>Síndrome de Sturge-WeberEl síndrome de Sturge-Weber es un problema relacionado con la manera en que crecen los vasos sanguíneos en la piel, lo ojos y el cerebro. Los vasos sanguíneos crecen demasiado y forman unos tumores llamados angiomas.https://kidshealth.org/ws/RadyChildrens/es/parents/sturge-weber-syndrome-esp.html/8ad0e83a-2275-4733-8149-a87da3993768
BirthmarksBirthmarks that babies are born with, or develop soon after birth, are mostly harmless and many even go away on their own, but sometimes they're associated with certain health problems.https://kidshealth.org/ws/RadyChildrens/en/parents/birthmarks.html/b901b39b-66e0-41a8-b6fa-83721cc48727
CLOVES SyndromeCLOVES syndrome is a very rare genetic disorder that causes vascular, skin, spinal, and bone or joint abnormalities.https://kidshealth.org/ws/RadyChildrens/en/parents/cloves-syndrome.html/0bfa9c17-b66f-4268-94cd-5b5f29fd7e88
Congenital Hemangiomas A hemangioma is a growth of tangled blood vessels. A congenital hemangioma is one that a baby is born with. They're usually a bluish or purple circle or oval. https://kidshealth.org/ws/RadyChildrens/en/parents/congenital-hemangioma.html/902c547d-f9c9-4edc-86c9-6f6bef5bb4d3
EmbolizationEmbolization is a procedure in which plugging material or a plugging object is put into a blood vessel to block it. It's used to help treat many conditions.https://kidshealth.org/ws/RadyChildrens/en/parents/embolization.html/60430803-a6ec-4663-8738-99ca92208556
HemangiomasA hemangioma is a growth of tangled blood vessels. Most hemangiomas grow larger for several months, then shrink slowly. Some will require treatment.https://kidshealth.org/ws/RadyChildrens/en/parents/hemangiomas.html/70accfce-1b1a-4220-9fee-c82f4601c69a
Individualized Education Programs (IEPs)Some kids may be eligible for individualized education programs in public schools, free of charge. Understanding how to access these services can help you be an effective advocate for your child.https://kidshealth.org/ws/RadyChildrens/en/parents/iep.html/ef341e68-df36-41ee-a535-d8b3906379f7
Infantile HemangiomasA hemangioma is a growth of tangled blood vessels. An infantile hemangioma becomes visible in the first few weeks after birth. https://kidshealth.org/ws/RadyChildrens/en/parents/infantile-hemangioma.html/5d6fe0c4-6c93-445e-b6e1-79172591e522
Neurocutaneous SyndromesNeurocutaneous syndromes are genetic disorders that lead to tumor growth in various parts of the body. Learn how to maximize the quality of life for children with these diseases.https://kidshealth.org/ws/RadyChildrens/en/parents/neurocutaneous.html/7e9e3b3a-59da-4998-8655-57927110240f
Port-Wine StainsFor most kids, these birthmarks are no big deal — they're just part of who they are. Read about port-wine stains, how to care for them, and, if necessary, what treatments are available.https://kidshealth.org/ws/RadyChildrens/en/parents/port-wine-stains.html/9573f8e2-b366-4cfa-945a-c5e97e0a3b74
SclerotherapySclerotherapy is a procedure in which medicine is injected into blood vessels or lymph vessels to make them close. It's used to treat vascular malformations.https://kidshealth.org/ws/RadyChildrens/en/parents/sclerotherapy.html/93061ebf-ebf3-4024-a3ae-3e39b43ad2e2
Speech-Language TherapyWorking with a certified speech-language pathologist can help a child with speech or language difficulties.https://kidshealth.org/ws/RadyChildrens/en/parents/speech-therapy.html/9bcaa854-6c27-4d01-80c3-176d24a1ac3e
What Is Interventional Radiology (IR)?Interventional radiology (IR) is a way for doctors to treat problems like vascular anomalies and tumors.https://kidshealth.org/ws/RadyChildrens/en/parents/intvnl-radiology.html/fd207990-831e-4754-b2b8-1cc6d5cd7829
What's a Birthmark?Birthmarks, also known as hemangiomas, get their name for one reason: They are marks on the skin of a lot of newborn babies! Find out more about birthmarks in this article for kids.https://kidshealth.org/ws/RadyChildrens/en/kids/birthmark.html/fc06de92-ad49-4647-a8a1-48bca99cb9b7
kh:age-allAgesOrAgeAgnostickh:clinicalDesignation-hematologykh:clinicalDesignation-oncologykh:genre-articlekh:primaryClinicalDesignation-neurologyHeart & Blood Vesselshttps://kidshealth.org/ws/RadyChildrens/en/parents/medical/heart/e9ef0549-4392-4778-974d-753019ce4b8b