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A vascular malformation is a type of vascular anomaly where a child’s blood vessels have grown abnormally or connected in an unusual way. Most vascular malformations in children form during a baby’s development in the uterus, and some can form after birth.
If your child has a vascular malformation or a hemangioma, you can trust the internationally recognized surgeons, specialists and researchers throughout Nemours Children’s Health System to provide advanced, life-enhancing care for your child and family.
Vascular malformations and tumors vary in size and they can change over time. Depending on the type and location, a malformation may be harmless or potentially life-limiting. Vascular malformations involve four types of vessels:
- arteries, which carry blood from the heart out to the body
- capillaries, the tiny vessels in all parts of the body that allow nutrients in the blood to filter out
- veins, which return blood to the heart
- lymph vessels, which collect fluid from the tissues, channel it to the torso (body core) and return it to the bloodstream.
Vascular malformations in children often involve more than one part of the body, so our multidisciplinary vascular anomaly teams include experts from several specialties: otolaryngologists (also known as ear, nose and throat or "ENT" surgeons), pediatric interventional radiologists, pediatric neurosurgeons, pediatric orthopedists, pediatric plastic surgeons, hematologists (blood specialists), dermatologists and others.
Vascular malformations can affect a child’s physical health, but they may also impact social and emotional development. While there is no single cause for vascular malformations, there are many effective treatments to correct and manage them — and their related conditions — so that your child can live a happy, independent life.
Expert Care You Can Trust
The Nemours vascular anomaly multidisciplinary teams include highly specialized, board-certified and fellowship-trained pediatric interventional radiologists, surgeons and medical specialists who have extensive experience providing innovative, researched-based treatments — including minimally invasive procedures — to children of all ages (from the tiniest newborns to adolescents).
Types of Vascular Malformations in Children We Treat
Vascular anomalies are relatively common, occurring in about 1 in 10 births. At Nemours, we treat nearly every type of pediatric vascular anomaly, from the mildest to the most severe. Some of the vascular anomalies we treat are:
- arteriovenous malformation (a tangle of arteries and veins)
- hemangioendothelioma (a rare vascular tumor that often develops in the womb)
- kaposiform hemangioendothelioma or “KHE” (a rare vascular tumor that usually develops later)
- nevus flammeus (port-wine stain, a common birthmark)
- pyogenic granuloma (a benign skin growth that bleeds easily)
- tufted angioma (a rare benign vascular tumor that appears during infancy or early childhood)
- venous malformation
- combined vascular malformations
- lymphatic malformations (including a cystic hygroma which occurs as a baby grows in the womb)
Vascular anomalies may also be associated with other problems that occur together as a group called a syndrome. The syndromes associated with vascular malformations in children include:
- Gorham-Stout Disease (also called “disappearing bone disease”)
- Hereditary Hemorrhagic Telangiectasia (HHT syndrome)
- Kasabach-Merritt Syndrome (also called Kasabach-Merritt phenomenon, a reduction of platelet levels)
- Klippel-Trenaunay syndrome (port-wine stain, varicose veins and undeveloped lymph system)
- Maffucci syndrome
- Multifocal lymphangioendotheliomatosis with thrombocytopenia (MLT)
- CLOVES syndrome
- Parker-Weber syndrome
- Sturge-Weber syndrome
- Proteus syndrome (also known as Wiedemann syndrome)
- PHACE syndrome (also called PHACE association)
The coordinated multidisciplinary vascular malformation programs at Nemours make it possible for your child to see specialists from areas such as otolaryngology, plastic surgery, dermatology and interventional radiology during a single visit. Our experts work together and with you to develop a treatment plan that cares for your child in the short and long term.
Symptoms of Vascular Malformations in Children
Vascular malformations are usually detected as a visible irregularity of the skin such as a birthmark or lump, an area of a different color or area that may be raised, swelling or bleeding. Sometimes, vascular lesions are hidden under the skin and noticed due to related symptoms such as pain, a tendency to bleed, difficulty breathing or heart problems.
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Resources for Patients & Families
Our pediatric Vascular Anomalies Program in Florida provides advanced diagnostics and treatment for children from all over the world with a wide range of vascular anomalies (blood vessels that have developed abnormally), including hemangiomas and arteriovenous malformations. This coordinated, statewide multidisciplinary program is managed by Nemours experts who are at the forefront in providing the latest in medical, interventional (minimally invasive radiology) and surgical therapies. Our goals are to restore functionality and cure disease related to vascular malformations in children.
As part of the Nemours Children’s Health System — a pediatric network that spans across Florida, Delaware and Greater Philadelphia — we reach across borders to advance the research and science of these rare diseases so that children around globe can get the best care possible, even those who never enter our doors.
In North Florida, the Vascular Anomalies Program is led by the otolaryngology (ear, nose and throat, or "ENT") and hematology divisions at Nemours Children’s Specialty Care, Jacksonville. Working in close collaboration with Wolfson Children’s Hospital and University of Florida Health at Jacksonville, our Nemours Vascular Anomalies Program offers families renowned, board-certified Nemours pediatric experts from several medical specialties who come together to customize a treatment plan specific to your child’s every need — physically, socially and emotionally.
In addition to ENT specialists and surgeons, members of your child’s vascular anomaly care team may include interventional radiologists, plastic surgeons and other specialists as needed based on the location of the anomaly. Along with highly qualified nurses, care coordinators and social workers, the team meets regularly to review every diagnosis and track treatment progress. In complex cases, we also teleconference and collaborate with hemangioma and vascular anomaly experts across the Nemours Children’s Health System.
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To give your child the very best treatment, our Vascular Anomalies Program works together as a team with any other specialists who may be involved in your child’s care. We also work closely with the nursing and anesthesiology teams, so everyone involved is well informed on your child’s behalf.
Throughout your child’s care, we count on you as an important member of the team, because no one knows your child better than you do. We know that a health condition can be stressful, so we take steps to make sure you and your child understand what’s going on every step of the way — and that you’re coping with all of the emotions and stresses you may be feeling.
In addition to the doctors listed above, your child’s vascular malformation care team may include:
- diagnostic radiologists (diagnosis through medical imaging)
- pathologists (doctors who study tissue samples under a microscope to see cellular characteristics)
- plastic surgeons (surgeons specializing in reconstructive, restorative and aesthetic surgery)
- geneticists (physicians specialized in genetic testing and counseling)
- orthopedic surgeons (bone and joint specialists)
- gastroenterologists (specialists in disorders of the digestive tract)
- psychology and psychiatry (pediatric behavioral health specialists)
- pulmonologists (specialists in diseases and disorders of the lungs)
- pediatric general surgeons (surgery of the abdomen)
- social workers (experts who help you cope and find resources for your child)
Specialized Care for Vascular Malformations in Children and Hemangiomas
The Vascular Anomalies Program team at Nemours Children’s Specialty Care, Jacksonville includes physicians, advanced registered nurse practitioners (ARNPs) and physician assistants (PAs) who have special training in treating children with vascular malformations. Because we understand the physical, social and emotional impact a complex medical condition can have on a child during growth and development, we work to restore function and preserve the confidence and happiness that every child deserves.
At Nemours, your child can come in for an evaluation, diagnosis and follow-up care for surgery performed by Nemours board-certified surgeons at our pediatric affiliate and neighbor, Wolfson Children’s Hospital (ranked among the country’s best hospitals for children by U.S. News & World Report).
Wolfson Children’s Hospital is one of the many health care providers we’ve affiliated with to make it easy for your child to get Nemours’ quality of care. This unique affiliation enables us to offer 24-hour emergency, inpatient and consultation services to the babies, kids and teens of Northeast Florida and Southeast Georgia.
At Nemours Children's Specialty Care, we treat nearly every vascular anomaly from mild to extremely complex cases, including:
- arteriovenous malformations and fistulas
- capillary malformations (port-wine stain)
- lymphatic malformations (lymphangioma, cystic hygroma)
- venous malformations
- PHACE association
- pyogenic granulomas
- kaposiform hemangioendotheliomas (KHE)
- CLOVES syndrome
- Klippel-Trenaunay syndrome
- Parkes-Weber syndrome
- Proteus syndrome
- Sturge-Weber syndrome
Vascular anomalies are sometimes called by descriptive terms, such as port wine stain, strawberry spot or salmon patch and can cause a range of symptoms and signs, including:
- recurrent bleeding
- mass effect (a growing vascular malformation may impair the function of an adjacent organ or tissue)
- exercise intolerance (the heart is unable to provide adequate circulation because the vascular anomaly is diverting oxygen-carrying blood directly into veins, wasting blood flow.)
- vascular bruit (“brew-ee”, a sound produced by high blood flow in a vascular malformation, usually heard with a stethoscope)
- weakness or palsy
Diagnosing and Treating Vascular Malformations in Children
The Diagnostic Process
Your child’s evaluation in the Vascular Anomalies Program will begin with a diagnostic appointment with one of our pediatric experts in vascular malformations and other team members as needed. We can often make a diagnosis at the time of the initial evaluation, but depending on your child’s symptoms and condition, we may recommend additional diagnostic testing (often the same day) and schedule further evaluation with other pediatric specialists — with appointments in days, not weeks.
During your child’s first visit, we’ll:
- obtain your child’s medical history and family medical history
- review your child’s medical records and previously obtained X-rays and tests (if available)
- perform a detailed physical examination
The physicians of the Vascular Anomalies Program also collaborate to minimize the number of tests, exposures to radiation (such as X-rays and CT scans) and anesthesia required to gather the information necessary to reach an accurate diagnosis and treatment plan.
While most conditions can be diagnosed by a physical examination, we may need to order additional tests, including:
- X-rays of the head, neck, chest and abdomen
- CT scans (computed axial tomography, also called CAT scans)
- CT angiography (CT scans with contrast to create detailed 3D images of blood vessels)
- lab studies
- MRI (magnetic resonance imaging)
- ultrasound imaging and flow studies
- nuclear imaging (use of a radioactive tracer to create an image)
More specialized testing such as conventional angiography (a test that uses dye and special imaging to show the insides of your child’s coronary arteries) and CT angiography may be needed to map the precise structure of the vascular malformation, and to determine how the malformation and its treatment might affect normal structures nearby.
Treatments forVascular Malformations in Children
Treatments for vascular malformations have advanced significantly and now offer many options for families to consider. In the past, “watchful waiting,” was a common approach, and patient families merely hoped for self-resolution as their child grew. Today, all patients have the option, and deserve, an expert evaluation by a specialist.
That’s because every lesion is different and often requires some combination of today’s advanced therapies. The strength of the team approach at Nemours is that every child will be given the latest treatments tailored to the individual lesion. Pediatric vascular anomaly treatment usually consists of:
- Medication Therapy: Medication therapy options for vascular malformations primarily include propranolol (for infantile hemangioma) and sirolimus (for lymphatic malformations, kaposiform hemangioendothelioma).
- Radiologic Intervention: A specially trained pediatric radiologist inserts a long, thin catheter into the blood vessels, and then advances it close to the vascular malformation. Once the tip of the catheter is in or near the malformation, the pediatric interventional radiologist uses a laser or other technique to clot or plug the blood vessels involved in the malformation, cutting off its circulation. Or in some cases, the radiologist may place a needle directly into the lesion using ultrasound guidance and then medications are directly injected.
- Surgery: Surgical options for vascular malformations are tailored to the lesion. This may include open surgery, minimally invasive surgery — including endoscopic and laparoscopic — laser therapy, or injections. The kind of surgery recommended depends on the type, size and location of the vascular malformation. If the vascular malformation is removed, plastic surgery techniques may be used at the same time or in a subsequent surgery to improve the cosmetic appearance of the area.
- clinical trials and participation in national registries
- CO2 superficial laser ablation
- endovenous laser ablation
- surgical resection/debulking
- medication therapies (including propranolol, sirolimus, timolol)
- multidisciplinary procedures when appropriate (including hybrid procedures involving both interventional radiology and surgery)
- pulsed dye laser
Convenient Care and Support for the Entire Family
We are committed not just to the welfare of the child, but to the child’s family, too. Knowing that a vascular malformation can be very stressful to both the child and family, we strive to ease the concerns inherent in every doctor visit and, if surgery is required, during the especially emotional time surrounding the surgery.
Nemours support services in Jacksonville include a Child Life program, creative therapy, a family advisory council, interpreters, a family resource library, and the Ronald McDonald House across the street.
In addition to the expert medical care provided by the Vascular Anomalies Program staff, our nurse navigators, educators, social workers and Child Life specialists provide:
- care coordination: scheduling multiple appointments, tests, procedures and at-home care at convenient times and places
- communication: keeping your primary care physician and community providers informed and in the loop
- collaboration: helping you create a support system and connecting you with families that are on the same journey
- patient and family education: providing information about your child’s condition, treatments, clinical trials and recent research at our resource library
- encouragement at the hospital and clinic: offering medical play therapy and procedure/surgery demonstration to ease fears
- advocacy: offering a voice for your child and family to secure appropriate services at school and in the community
- seminars and training
Learn more about support services in Jacksonville:
No matter where your child receives care at Nemours, your medical team (including your primary care provider) can access your child’s medical history, test results and visit notes anytime through our award-winning electronic health record system.
You can also view parts of your child's health records, communicate with your Nemours care team, make appointments, request prescription refills and more through our MyNemours online patient portal.
What to Expect When Your Child is Scheduled for a Catheterization (“Cath”) Study or Treatment
Catheterization is a nonsurgical procedure in which an interventional radiologist inserts a very thin wire or tube called a catheter through blood vessels to reach a vascular malformation. The radiologist may use the catheter to determine how blood vessels flow and connect in the malformation, or use the catheter to treat it. The treatments that can be delivered through a catheter include embolization (blocking), sclerosing (closing off vessels using a chemical that triggers vessel clotting, contraction and closure), or laser coagulation and ablation, which can produce thrombosis (clotting) and closure of blood vessels.
Your child’s doctor and the Vascular Anomalies Program team will discuss the kind of anesthesia or sedation to be used during the catheterization. General anesthesia is often preferred to prevent movement that could interfere with the procedure. Depending on the type of the catheterization your child needs, admission to the hospital and an overnight stay may be required.