CLOVES syndrome is a rare congenital (present at birth) disease that affects the blood and lymphatic vessels, spine, bones/joints, skin and sometimes internal organs. It’s estimated that only 150 children have been diagnosed with CLOVES syndrome so far. Nemours has one of a few of pediatric hospitals in the country equipped to treat this complex condition with life- and limb-saving interventional radiology procedures.
About CLOVES Syndrome
CLOVES is a recently described nonhereditary genetic disorder named for a combination of conditions that make up the syndrome.
The acronym "CLOVES" stands for:
- Congenital Lipomatous Overgrowth (fatty tissue masses or tumors present at birth)
- Vascular anomalies (problems with lymph and blood vessels)
- Epidermal nevi (skin lesions)
- Spinal/skeletal anomalies (scoliosis, tethered cord)
Symptoms of CLOVES Syndrome
CLOVES syndrome symptoms vary widely in combination and severity. In addition to large visual fatty tissue masses on the abdomen, backside, underarms and/or flank (sides), CLOVES symptoms can also include:
- abnormal extremities (large, wide hands and feet, unusual spacing between toes and fingers)
- dilated veins (chest and extremities)
- birthmarks (raised, red or brown areas, port wine stains)
- spinal curvature (scoliosis) or tethered cord (spinal cord attachment to the spinal column)
- kidney problems (unusual size, asymmetry, Wilms tumor)
- intestinal problems (bleeding)
- asymmetric growth (one side grows faster than the other, such as arms and leg, head)
Diagnosing CLOVES in Children
Generally visually diagnosed at birth, CLOVES syndrome is sometimes mistaken as Klippel-Trenaunay syndrome (KTS) or Proteus syndrome. This is why careful examination and advanced imaging (MRI, CT scan, ultrasound) may be necessary to confirm a CLOVES diagnosis. Fetal diagnosis (while a baby is still in the womb) is also possible.
How CLOVES Syndrome Is Treated
There is no "cure" for the syndrome, but the conditions and symptoms of CLOVES can be treated by a team of pediatric specialists.
Some treatments include:
- interventional radiology procedures (shrink tumors, repair lymph and blood vessel malformations)
- surgery (general, urology, gastroenterology, thoracic)
- orthopedic procedures (correct spine, bone and joint problems)
- neurosurgery (repair tethered spinal cord, brain and craniofacial anomalies)
- rehabilitation therapies (physical, occupational, speech and language)
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Treating CLOVES Syndrome at Nemours Children's Hospital
Dr. Craig Johnson at Nemours Children’s Hospital in Orlando is one of about 100 pediatric interventional radiologists in the country who performs image guided procedures to treat life threatening conditions, such as vascular anomalies and tissue overgrowth in babies with CLOVES syndrome.
Expert Pediatric Care That's Close to Home
The interventional radiology (IR) team at Nemours Children’s Hospital is changing lives with pediatric expertise and technology previously unavailable in the Southeast. The IR team leads our Vascular Anomalies Program, where newborns and infants with CLOVES syndrome benefit from:
- advanced pediatric services at a free-standing, pediatrics-only hospital
- care from one of few pediatric interventionalists in the nation experienced with this disease
- latest equipment specifically modified for children, even the tiniest newborns
- procedures using tiny incisions that can reduce risk for infection and time in the hospital, and improve recovery
- interdisciplinary care with pediatric surgeons and renowned experts in many specialties, such as orthopedists, neurosurgeons, rehabilitation specialists and more
- family-centered care and support every step of the way
How We Treat CLOVES Syndrome in Central Florida
Pediatric specialists at Nemours Children’s Hospital offer many unique programs and services to help children with CLOVES syndrome reach their full potential.
Interventional radiology (IR) refers to nonsurgical and minimally invasive image-guided techniques (X-ray, CT, MRI or ultrasound) that use tiny incisions (less than an inch in some cases). IR can often eliminate the need for traditional, open surgery.
Vascular (blood and lymph vessels) anomalies and tissue overgrowth (masses or tumors) due to CLOVES syndrome are treated with embolization or sclerotherapy. These innovative techniques use catheters (thin, flexible plastic tubes fed through veins or arteries) to access and repair the problem with medicines, even in newborns only days old.
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Fellowship-trained pediatric specialists and general and subspecialty surgeons evaluate conditions that occur with, or because of, CLOVES syndrome. If necessary they can perform complex procedures, including renowned minimally invasive techniques.
- orthopedics surgery (limb lengthening, hip restoration, hands and feet malformations)
- general/oncologic surgery (tumor reduction)
- gastroenterology surgery (intestinal bleeding, motility problems, inguinal hernias)
- thoracic surgery (chest wall deformities)
- urologic surgery (kidney cysts, undescended testes)
- neurosurgery (tethered spinal cord, brain asymmetry, misshapen head)
Rehabilitation helps increase your child’s independence, mobility and function — physically, socially and emotionally. We offer comprehensive services for children with CLOVES syndrome including:
- physical medicine and rehabilitation (pediatric physiatrist-designed occupational and physical therapies in an inpatient and outpatient setting)
- speech and language therapy (improve speech and feeding and swallowing problems)
- behavioral health (coping strategies and talk therapy for your child and family)
- pain management (inpatient day-stay and outpatient programs)
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What to Expect at Your First Visit
While commonly diagnosed at birth, some children with CLOVES syndrome begin to show symptoms weeks or months later. At your child’s first visit, our pediatric experts will:
- review previous medical records and tests if available
- perform a detailed physical and medical history
- order advanced testing or imaging, often on the same day
- recommend additional specialist evaluations if needed
Advanced Diagnostic Imaging and Tests
If advanced imaging is required — such as CT scan, MRI or ultrasound — our radiology commons offers:
- comfortable, kid-friendly atmosphere
- the safest, most advanced equipment available for the best results
- highly trained radiology technicians and Child Life specialists skilled at reducing the need for sedation or anesthesia, even with newborns and infants
- results read by pediatric radiologists onsite and expert subspecialists across the Nemours system if needed