Vascular Malformations

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.

Read More About Vascular Malformations in Children

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)
  • hemangioma
  • 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.

Nemours Children's Hospital, Orlando

13535 Nemours Parkway
Orlando, FL 32827
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For Appointments: (407) 650-7715

What to Bring
  • photo ID
  • medical and pharmacy insurance cards
  • preferred pharmacy name and phone number
  • names and dosage of all medications, including over-the-counter medication, your child is currently taking
  • guardianship and custody papers, if a legal guardian rather than a parent accompanies your child
New Patients

Bring these forms for your first appointment:

Returning Patients
  • Patient Presents Without Legal Guardian (PDF)
    English | Spanish
    Note: A parent or legal guardian must be with a child for a first visit.

Please provide as much information as possible to Nemours prior to your evaluation with the vascular anomalies team, including:

  • medical records pertaining to the condition (including history, prior scans, radiology images/studies, etc.)
  • prior images of your child, if applicable
  • pathology reports, if available
Forms & Resources
New Patient Forms
Returning Patient Forms
  • Patient Presents Without Legal Guardian (PDF)
    English | Spanish
    Note: A parent or legal guardian must be with a child for a first visit.
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 Central Florida, the Vascular Anomalies Program is led by experts in interventional radiology at Nemours Children’s Hospital in Orlando. Our interventional radiologists are the only dual-trained pediatric diagnostic and interventional radiologists in the region, which means they’re experts at treating hemangiomas and other vascular malformations in children using advanced, minimally invasive, image-guided procedures that do not require open incisions. Here, specialists from many medical disciplines work closely to customize a treatment plan for your child’s every need — physically, socially and emotionally.

In addition to board-certified pediatric interventional radiologists, members of your child’s multidisciplinary vascular malformation care team may include otolaryngologists (ear, nose and throat, or "ENT" specialists and surgeons), plastic surgeons, neurosurgeons and hematologists/oncologists. 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 other vascular anomaly experts across the Nemours Children’s Health System.

Learn More About Interventional Radiology at Nemours Children’s Hospital »
Learn More About Pediatric Otolaryngology (ENT) Care at Nemours Children’s Hospital »

A Team Approach to Your Child’s Vascular Malformation Care

To give your child the very best treatment, our Vascular Anomalies Program staff 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 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 anomaly care team may include:

Our program coordinator will serve as your point of contact for the Vascular Anomalies Program.

Specialized Care for Vascular Malformations in Children and Hemangiomas

The Vascular Anomalies Program at Nemours Children’s Hospital in Orlando includes physicians, advanced registered nurse practitioners (ARNPs) and physician assistants (PAs) and other specialists who have special training in 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.

And our Central Florida vascular malformation experts are located at Nemours Children's Hospital in Orlando — a state-of-the-art facility that brings pediatric specialty care never before offered in Central Florida.

Vascular Malformations We Treat

At Nemours Children's Hospital, we treat nearly every vascular anomaly from mild to extremely complex cases, including:

  • arteriovenous malformations and fistulas
  • capillary malformations (port-wine stain)
  • hemangiomas
  • 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
  • pain
  • ulceration
  • 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.

Your Child’s First Visit: What to Expect

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
If Your Child Needs Additional Diagnostic Tests, Our Experts Coordinate Them

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 for Vascular 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.
Services We Offer to Treat Vascular Malformations in Children
  • clinical trials and participation in national registries
  • CO2 superficial laser ablation
  • endovenous laser ablation
  • sclerotherapy
  • 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

Dealing with a chronic or complex medical condition is difficult for your child and family, but you don’t have to go through it alone. Nemours Children’s Hospital provides an array of support services that begin on the very first day we meet, and continue throughout your journey.

Support Services at Nemours Children’s Hospital

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
  • 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

Learn More About Support Services at Nemours Children’s Hospital in Orlando »

Convenient Follow-up Appointments in Your Neighborhood

Some of the very same specialists you see at Nemours Children’s Hospital also provide follow-up appointments at our convenient Central Florida specialty care locations in downtown Orlando, Lake Mary and Melbourne.

Electronic Health Record: Keeping Track of Your Child’s Progress

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.

Learn More About MyNemours »

What to Expect When Your Child is Scheduled for a Catheterization (“Cath”) Study or Treatment

Catheterization is a non-surgical 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.

What to Expect When Your Child Needs Surgery

If your child needs surgery, you can trust the highly trained pediatric surgical team at Nemours Children’s Hospital. Our pediatric surgical specialists (surgeons, anesthesiologists and nurses) understand what kids (and families) need, psychologically and physically.

Because we truly believe in family-centered care, we invite you (one parent or guardian) to the operating room to be with your child until just after sedation. We also provide our families with a peaceful place to wait without leaving the surgical floor, in our beautiful rooftop garden.

What Happens During the Presurgical Visit

Before any type of surgical procedure, your child will require a presurgical visit. At this visit, you and your child will meet your surgeon, discuss the diagnosis and details of the operation, and get answers to all of your questions or concerns. You may also meet with an anesthesiologist if necessary.

We’ll call you before your visit so you'll know what to bring, like:
  • any medications your child is currently taking
  • your ID
  • insurance and/or Medicaid cards
  • proof of guardianship, if applicable

When you arrive for a presurgical visit, go directly to the presurgical clinic area on the second floor. There, the patient service representative will review and verify your information and insurance. You will also complete a medical history form.

A nurse practitioner will assist with the visit and order any necessary tests. She or he will also inform you about what to expect the day of the surgery, including:

  • how your family will be kept updated during the procedure
  • when you can expect the surgeon to come out and speak with you
  • when you can join your child in the recovery room

EmmiKids Programs: Online Educational Videos for Families

At the end of the presurgical visit, you and your child may have the option to view an online educational program from EmmiKids about the upcoming surgical procedure and the anesthesia. You can watch these programs at the hospital or you may choose to watch them at home or in your local library. We’ll give you an access code to view the program(s).

Learn More About EmmiKids at Nemours »

How to Prepare the Day Before Surgery

The day before surgery, the surgical services staff will call you to check on your child’s health status, give you a time of arrival for the next day, update you on feeding instructions, and answer any questions.

General Feeding/Drinking Instructions

No food, milk, formula or breast milk may be consumed after a specific time (provided by your surgeon) on the day of the surgery. Your child may only have apple juice, electrolyte replenishing/sports drinks or water up to four hours prior to scheduled surgery time. These are considered “clear liquids.” We ask that you do not substitute other juices. Special Note: Infants 11 months or younger may have breast milk, but only up to six hours prior to surgery.

Suggested items to pack for your child:
  • empty baby bottle or cup
  • special feeding or suction equipment (if needed)
  • bathrobe
  • slippers
  • socks
  • favorite stuffed animal and/or blanket
  • loose-fitting clothes
  • eyeglasses (if needed)
Please remove the following items from your child:
  • all jewelry — including earrings
  • fingernail polish
  • hair accessories
  • contact lenses
  • retainers
What Happens the Day of Surgery

On the day of surgery, we ask that you be here at the time instructed so your child’s surgery won’t be delayed. We encourage you to allow extra time in your travel plans in case of traffic or unexpected delays.

Parking and Where to Go in the Hospital

When you arrive at the hospital on the day of surgery, you can use our complimentary valet parking, or you can self-park in the garage near the outpatient entrance. Valet services are located at the outpatient entrance and are available Monday through Friday, from 8 a.m. to 6 p.m.

Once inside the hospital, go straight to the surgical services desk on the second floor. There, the patient service representative will greet you, review your child’s information and insurance status, and check your child in. We’ll give you a case number, as well as a pamphlet with instructions about where to go and what to do during the waiting period. We’ll ask your child to change into a hospital gown and will then check vital signs: temperature, pulse, blood pressure and weight.

Just Before Surgery

While waiting for surgery, your child can play in our colorful, relaxing surgical commons area featuring many interactive games and activities to help reduce anxiety and pass the time. We also have a “toy store” where your child or teen can choose from a variety of gifts like stuffed animals, ball caps, and electronic items to keep.

When it’s close to the time for surgery, we’ll escort you and your child to an exam room, where you’ll meet the anesthesiologist and operating room nurse. As part of our unique family-centered model of care, our anesthesiologists may allow one parent to accompany your child to the operating room and stay until just after the anesthesia is administered.

During and Just After Surgery

You’ll be asked to stay in the surgical waiting area while your child is in the operating room. A nurse liaison or a trained volunteer will keep you updated during the procedure. If you need to leave the area for any reason, please inform a staff member.

After surgery, your child’s surgeon will come out to discuss the procedure and answer any questions you may have. We’ll inform you as soon as you can join your child in the recovery area or “wake up” room.

Patients must be fully awake before discharge. You should plan to stay in the recovery area for at least one hour (or longer, depending on your child). It’s very common for children to experience nausea and/or vomiting just after surgery, and also have a flushed face. We’ll offer clear liquids to drink when your child is ready. If your child will be admitted to the hospital after surgery, you’ll be given instructions ahead of time.

Once your child is ready for discharge, a nurse will review instructions with you regarding diet, wound care, medication, activity, and when your child should return to see the doctor. You may also be given prescriptions.

What to Expect During and Just After Surgery

You’ll be asked to stay in the surgical waiting area while your child is in the operating room. A nurse liaison or a trained volunteer will keep you updated during the procedure. If you need to leave the area for any reason, please inform a staff member.

After surgery, your child’s surgeon will come out to discuss the procedure and answer any questions you may have. We’ll inform you as soon as you can join your child in the recovery area or “wake up” room.

Patients must be fully awake before discharge. You should plan to stay in the recovery area for at least one hour (or longer, depending on your child). It’s very common for children to experience nausea and/or vomiting just after surgery, and also have a flushed face. We’ll offer clear liquids to drink when your child is ready. If your child will be admitted to the hospital after surgery, you’ll be given instructions ahead of time.

Once your child is ready for discharge, a nurse will review instructions with you regarding diet, wound care, medication, activity, and when your child should return to see the doctor. You may also be given prescriptions.

What to Expect the Day After Surgery

Make sure your child rests as much as possible after surgery. Temporary nausea or vomiting is quite common after discharge. But if your child experiences any of the symptoms below, call your surgeon or the nursing staff immediately:

  • a fever of more than 101 degrees Fahrenheit
  • persistent nausea or vomiting
  • severe pain that’s not relieved by prescribed medication
  • excessive bleeding from an incision

A nurse will call to check on your child’s recovery and to address any questions or concerns. We’re committed to making your child’s surgical visit as pleasant and safe as possible – before, during and after the procedure.

Managing Pain After Surgery: Nemours Pain Management Program

If your child is experiencing postsurgical pain, we can help. Nemours Children’s Hospital has one of the only pediatric pain management programs in the country that provides holistic, whole-child — and whole family — healing for children and teens experiencing acute (temporary) or chronic (ongoing) pain. Our integrated program is led by a world-renowned pediatric anesthesiologist who is also board-certified in pain management. We focus on relieving the physical, mental, and emotional aspects of pain using a variety of therapies in an outpatient or inpatient (day stay hospital program) setting.

Learn More About Pediatric Pain Management at Nemours Children’s Hospital »

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.

If Your Child Needs to Stay Overnight in Our Hospital

You’ll feel right at home in our patient's 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

Learn More About Nemours Children’s Hospital »

Advanced Pediatric Medical Imaging Services Available Onsite

If your child needs medical imaging, we offer some of the area’s most advanced pediatric radiology services here on campus at Nemours
Children’s Hospital.

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. Nemours also offers the only dual-trained pediatric diagnostic and interventional radiologists in the state, including those based at Nemours Children's Hospital.
  • 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.

Learn More About Medical Imaging at Nemours Children's Hospital »

Family-Centered Care Means We're Here for You

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.

Learn More About Interpreter Services at Nemours Children’s Hospital »