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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Note: A parent or legal guardian must be with a child for a first visit.
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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
A Hospital Designed by Families, for Families
At Nemours Children’s Hospital, family-centered care is at the heart of everything we do. In fact, families helped shape the unique amenities and convenient services that make our hospital like no other in the region.
You’ll feel right at home in one of our private patient rooms designed with input from families who know what it’s like to have a child in the hospital.
Our large, comfortable, single-patient rooms have sleeping accommodations for two parents, a private bathroom, wireless Internet access, connections for DVD players and game systems, and two flat-screen TVs.
Other in-room features include:
- full floor-to-ceiling windows for natural light
- refrigerator for family meals and snacks
- wardrobe storage for personal items and a hotel-style safe
- GetWellNetwork interactive television (uniquely based on your child’s age, medical condition and more) and allows your child to watch TV, surf the Web, check e-mail, play music and games, and learn about your Nemours health care team.
Our “hospital within a garden” setting features many places for you and your family to go for fresh air and relaxation, including a one-acre interactive sensory discovery garden or one of our rooftop gardens on the second and fourth floors.
We have many more comforts and amenities such as:
- complimentary valet and parking
- kid-friendly commons areas for siblings
- café and coffee shop
- nondenominational chapel
- concierge services
If your child needs medical imaging, we offer some of the area’s most advanced pediatric radiology services here on campus at Nemours
Our unique services include:
- interventional radiology: Our team of experts uses image guidance to diagnose and treat diseases and tumors throughout the body. Certain conditions that previously required open surgery can now be treated by Nemours pediatric interventional radiologists. We are very fortunate to have the only dual-trained pediatric diagnostic and interventional radiologist in the state.
- neuroradiological or cardiovascular imaging, and fetal MRI (magnetic resonance imaging): Our subspecialty-trained pediatric radiologists see children with complex conditions who require this highly specialized imaging.
- Central Florida’s only 256-slice Brilliance iCT Scanner: We are one of only a handful of children’s hospitals in the country to have this latest generation CAT (or CT) scanner that scans faster than most machines and produces excellent images in a much shorter time with much less radiation exposure for the child.
Our team of board-certified pediatric radiologists and pediatric radiologic technologists are experts in the safe medical imaging of children of every age, even newborns.
We have also pledged our commitment to the “Image Gently” campaign of the Alliance for Radiation Safety in Pediatric Imaging, which is increasing awareness of the opportunities to promote radiation protection in the imaging of children.
At Nemours, we want to hear your concerns and share with you everything we can about your child's condition and treatment. If English is not your first language, we'll make sure you understand what to expect — in your language.