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Macrocephaly-Capillary Malformation Syndrome

In Macrocephaly-Capillary Malformation Syndrome (MCM), patients have a persistent nevus simplex or port wine stains​, as well as a large head. Children with this syndrome often also have developmental delays and other body malformations, such as extra or enlarged fingers or toes. Their bodies may not be symmetrical, meaning one side may be larger than another. Because of abnormalities in the brain, these children may have seizures or an excess amount of fluid in the brain (hydrocephalus). Children with this syndrome may also have very flexible joints. This syndrome is caused by a genetic mutation.  

Treatment
Children with MCM will need to be followed by many specialists. Due to their head size and irregular brain growth, they will need to be followed by a neurologist and may need to see a neurosurgeon. Medication will be used to treat seizures when they occur. Dermatologists can consider treatment of the port wine stains with pulsed dye laser. Plastic and orthopedic surgeons may be needed to treat abnormalities of the child’s digits. Many practitioners suggest monitoring for a type of kidney cancer, Wilm’s tumor, in patients with MCM syndrome.

The Vascular Lesion Center at Lurie Children's provides comprehensive care to children with MCM.  Depending on the location and severity of the malformation, your child may need to be seen by many of our team’s specialists including dermatologists, interventional radiologists, otolaryngologists, neurologists, plastic and general surgeons, oncologists, and physiatrists. Our psychologist and social worker will be able to help you and your child adjust to the changes and special needs that this condition requires. The specialists on our team collaborate to develop a specialized plan of care that meets all of your child’s unique needs. 

Make an Appointment

If you’d like to request an appointment with one of our specialists from the Vascular Lesion Center, call 312.227.8521 (VLC1).

Related Specialties & Services

Read about the specialty areas and services that treat Macrocephaly-Capillary Malformation Syndrome.