Glossary terms are arranged alphabetically.


504 Plan: A plan recommended in Section 504 of the Rehabilitation Act.  This is a civil rights law that ensures individuals with disabilities are not excluded from participation in programs that receive federal financial assistance, such as public schools. A 504 plan ensures that an individual will receive the necessary accommodations to ensure their academic access in the learning environment.  [ADHD, IBD, Diabetes, Transplant]

6MP: Mercaptopurine, an immunosuppressive medication used to treat IBDs. [IBD]


Actigall: A cholesterol medication. [Transplant]

Acute disseminated encephalomyelitis: (ADEM) A brief but intense attack of inflammation in the brain and spinal cord. [Self-Cathing]

ADEM: Acute Disseminated Encephalomyelitis. [Self-Cathing]

Adderall: A medication used to treat ADHD. [ADHD]

Anaphylaxis: A serious, rapid-onset allergic reaction that may cause death. [Asthma]

Angiogram: An X-ray that issued to take pictures of blood flow in an artery. [Vascular Anomalies]

Antiangiogenic: A medication used to inhibit the growth of new blood vessels. [Vascular Anomalies]

Anticholinergics: Medications that slow down smooth muscle contractions, allowing the bladder to hold more urine without leaking or accidents. [Self-Cathing]

APGAR: Appearance, Pulse, Grimace, Activity, Respiration. A scale used to quickly evaluate and summarize a newborn baby’s health. [Hearing Loss]

Appendo Vesicostomy: See Mitrofanoff. [Self-Cathing]

Aquatic Therapy: Treatments and exercises for physical rehabilitation, or other therapeutic benefit, performed in water. [Cerebral Palsy]

Arteriogram: A medical imaging examination of the arteries following injection of a radiopaque substance. [Vascular Anomalies]

Arteriovenous malformation (AVM): Abnormal direct connections between arteries and veins that are congenital (present at birth). The normal network of tiny vessels (capillaries) that normally connect the arteries and veins is missing in an arteriovenous malformation. [Vascular Anomalies]

Artificial Sphincter: An inflatable cuff that can be surgically implanted to treat urinary incontinence. The cuff fits around the urethra and prevents leaking when inflated. It is periodically pumped open to allow urine to drain and closes spontaneously after a while. [Self-Cathing]

Asacol: A medicine used to treat ulcerative colitis. [IBD]

ASL: American Sign Language. A visual language used by members of the North American Deaf community. ASL has its own unique rules of grammar and syntax. The shape, placement, and movement of the hands, as well as facial expressions and body movement, all play an important role in conveying information.  ASL is not a universal language; similar to spoken languages, signed languages develop naturally in their own countries. [Hearing Loss]

Atenolol: A medication used to treat high blood pressure. [Self-Cathing]

Atomoxetine: A medication used to treat ADHD. [ADHD]

Atresia: A condition in which there is an absence or closure of a natural passage in the body. [Transplant]

Atrophy: When referring to body tissue or organs, wasting away.[Transplant]


Balloon: Balloons are placed under the skin in a procedure known as skin expansion. This procedure causes the body to grow extra skin by mechanical overstretch. [Vascular Anomalies]

Beta Blocker: A medication that reduces the workload on the heart and helps it to beat more regularly. This medicine is used to treat high blood pressure. [Transplant]

Bilirubin: A byproduct of the breakdown of old red blood cells. Bilirubin must be conjugated to leave the body, and a buildup of bilirubin in its unconjugated form may be indicative of certain types of diseases. [Transplant]

Biofeedback: A technique that involves audio/visual feedback to help people gain control over bodily functions. Biofeedback is sometimes used to teach people how to control their pelvic floor muscles, which can help prevent incontinence. [Self-Cathing]

Bipolar: A psychiatric illness characterized by both manic and depressive episodes, or manic ones only. [ADHD, Depression]

Bisacodyl: A laxative, used to treat constipation. [Self-Cathing]

Bladder Augmentation: A reconstructive surgery to increase the size and stretchiness of the bladder. [Self-Cathing]

Bladder Exstrophy: A congenital anomaly in which the abdominal wall does not close properly during fetal development, allowing the bladder wall to protrude at birth. This anomaly typically requires a series of surgical repairs. [Self-Cathing]

Bladder Irrigation: Flushing out the bladder, for example, with saline or antibiotics. [Self-Cathing]

Bladder Neck: The place where the urethra and bladder join. Muscles actively work to keep the bladder neck closed during storage, and dysfunction with these muscles can cause urinary incontinence. [Self-Cathing]

Bleb: An elevated lesion on the skin containing fluid. [Vascular Anomalies]

Bleomycin: A type of sclerosing agent. [Vascular Anomalies]

Blue Lights: Bilirubin is broken down or conjugated by light. When the liver is unable to break down bilirubin, blue lights can be used as a temporary measure to break down bilirubin. [Transplant]

Blue Rubber Bleb Nevus Syndrome: A venous malformation syndrome in which the lesions are most commonly found in the skin and the GI tract. [Vascular Anomalies]

Bolus: Administration of a discrete amount of medication in order to raise its concentration in blood. [Diabetes]

Boost, Carnation Instant Breakfast, Ensure: A dietary supplement beverage. [IBD]

Botox (or botulinum toxin): A toxin with many medical applications, sometimes used to temporarily paralyze overactive bladder muscle in order to prevent incontinence, or to open the sphincter, allowing the bladder to drain continuously. [Cerebral Palsy, Self-Cathing]

Bronchitis Obliterans: A rare and life-threatening lung disease that is non-reversible.[Transplant]

Bronchoscopy (bronch): A procedure in which a bronchoscope is inserted into the airway. This allows the doctor to view the airway, and can be used for diagnostic and therapeutic purposes. [Transplant]

BUN: Blood Urea Nitrogen, a test to assess function of the kidneys. [Transplant]


Capillary Malformation: A flat, red-pink stain on the skin that is present at birth. It’s caused by dilated capillaries in the skin that enlarge and darken as one grows older. [Vascular Anomalies]

Cardiomyopathy: A disease in which there is a decrease in the function of the muscles of the heart. [Transplant]

CarePage: Online community dedicated to sharing feelings surrounding a life changing medical event. [Bereavement, Cerebral Palsy, Vascular Anomalies, Transplant]

Catheterization (cardiac): A procedure in which a long, flexible tube–a catheter–is inserted into a vein or artery and guided into the heart. It is used to examine the heart and in some cases can be used diagnostically. [Transplant]

Catheterization (urinary): A procedure where a thin flexible plastic tube called a catheter is gently inserted into the urethra and advanced into the bladder to drain it of urine. [Self-Cathing, Transplant]

CC: Cubic centimeter, a liquid measure equal to one milliliter. [Self-Cathing]

CCFA: Crohn’s and Colitis Foundation of America. [IBD]

Cellulitis: An infection of the skin and underlying tissue. [Self-Cathing, Vascular Anomalies]

Cipro: An antibiotic used to treat bacterial infections of the urinary tract. [IBD]

Cirrhosis: Chronic liver damage leading to scarring and liver failure.[Transplant]

Cisapride: A drug used to increase motility in the upper GI tract. [Transplant]

Cloacal Anomaly: A complex congenital defect found mostly in females, in which reproductive, gastrointestinal, and urinary tracts merge to drain out of one common opening. This anomaly typically requires a series of surgical repairs. [Self-Cathing]

Clonidine: A medication used to treat hypertension (high blood pressure) and ADHD. [ADHD]

CLOVES Syndrome: A rare congenital (present at birth) disorder characterized by a combination of vascular (involving the blood vessels), skin, spinal and bone or joint abnormalities. [Vascular Anomalies]

CMV (Cytomegalovirus): A type of virus that is usually unnoticed in healthy people but can be life threatening for people who are immunocompromised.[Hearing Loss, Transplant]

Cochlear Implant: An electronic medical device to replace the function of the inner ear by providing sound signals to the brain. [Hearing Loss]

Coil (Telecoil): A small coil inside the hearing aid that works as a small receiver. [Hearing Loss]

Colostomy: A procedure in which the large intestine is brought to the surface of the abdominal wall through a surgically created opening, providing an alternate route for the elimination of feces. [IBD, Self-Cathing]

Complex Care Services: (CCS) A program of coordinated care for Children’s patients with complex medical and developmental needs. [Self-Cathing]

Compression Garments: A tight fitting piece of clothing, usually worn on the arm or leg, which provides pressure and helps with fluid movement in the affected limb. [Vascular Anomalies]

Compression Hose: See Compression Garments [Vascular Anomalies]

Compression Stockings: See Compression Garments. [Vascular Anomalies]

Computed Tomography (CT) Scan: A technology that uses x-rays linked to a computer to create cross-sectional images of the inside of the body. [Hearing Loss, Vascular Anomalies]

Concerta: A medication used to treat ADHD. [ADHD]

Coumadin: A medication used to treat and prevent blood clots. [Transplant]

CPAP (Continuous Positive Airway Pressure): A treatment in which mild air pressure is used to keep the airway open. It is commonly used in people with trouble breathing. [Transplant]

Creatinine: A byproduct of muscle metabolism, normally filtered from the bloodstream by the kidneys. High creatinine blood levels may suggest kidney malfunction. [Self-Cathing, Transplant]

Crigler Najjar: A rare inherited disorder in which the enzyme that converts bilirubin into a form that can exit the body is absent. [Transplant]

CTA (Computerized Tomographic Angiograph): An imaging technique used to visualize the blood vessels in the body. [Transplant]

CUB: Clinic the Children’s Hospital Center for Continence of Urine and Bowel, a multidisciplinary program that treats children with urinary and bowel incontinence. [Self-Cathing]

CVS: Central Venous Line, a thin tube passed through a vein and threaded near the heart, through which medications and fluids are delivered. [Self-Cathing]

CVL: Central Venous Line, a catheter that is put through vein to the thoracic portion of the vena cava. [Self-Cathing]

Cyclosporine: A type of medication used to prevent transplant rejection. [Transplant]

Cyst: A closed sac-like structure, usually filled with fluid. [Vascular Anomalies]

Cystic Fibrosis: An inherited disease in which thick, sticky mucus builds up in the lungs and digestive tracts. This build up can cause lung infections and difficulty with digestion. [Transplant]

Cystic hygroma: An old term for a lymphatic malformation. [Vascular Anomalies]

Cystoscopy: A procedure that allows a doctor to look at the inside of the bladder and urethra using an instrument called a cytoscope. It is usually performed under anesthesia. [Self-Cathing]


De Tethering (or Untethering): Surgical treatment for a tethered spinal cord. It involves detaching the abnormal connections between the spinal cord and surrounding tissues. [Self-Cathing]

Debulking: The surgical removal of overgrown soft tissue or bulky vascular malformation. [Vascular Anomalies]

Deep vein thrombosis: The formation of a blood clot in a vein deep in the body, usually in the leg. [Vascular Anomalies]

Detrusor: A muscle that makes up the main layer of the urinary bladder wall. The detrusor contracts to push out urine during urination, and relaxes to allow the bladder to fill during storage. [Self-Cathing]

Dexedrine: A stimulant medication used for the treatment of ADHD. [ADHD]

Dialysis: The process of using a machine to remove excess waste and water from the blood, acting as an artificial kidney for those with failing kidney function. Dialysis is sometimes given as an intermediate treatment until a patient is ready for a kidney transplant. Peritoneal dialysis and hemodialysis are two different types of dialysis. Peritoneal dialysis may be done at home, while hemodialysis is done at a hospital or dialysis center. [Transplant, Self-Cathing]

Diplegia: Paralysis affecting symmetrical parts of the body (i.e. both legs). [Cerebral Palsy]

Diverting Colostomy: An opening created by drawing the end of the large intestine (colon) through an incision in the abdominal wall. It allows stool to leave the body when the large intestine is removed or needs time to heal. [Vascular Anomalies]

Docusate: A stool softener, used to treat constipation. [Self-Cathing]

Doxycycline: An antibiotic used as a sclerosing agent. [Vascular Anomalies]

Drain: A tube placed in a surgical area that drains fluid. [Cerebral Palsy, Vascular Anomalies]

DSM: Standard classification of mental disorders used to aid mental health professionals in diagnosis. [ADHD]

Dural Tear: A tear in the sac of tissues covering the spinal cord. [Self-Cathing]

Dyslexia: Disorder characterized by difficulties reading despite normal intelligence. [ADHD]

Dysplastic and Cystic Kidney Disease: A condition in which the kidney has been essentially replaced by multiple cysts. It is the result of abnormal fetal development of the kidney. There is little or no normal function to this kidney. [Transplant]

Dyssynergy: A dyscoordination of two of the muscles in the urinary tract, the detrusor and the external urethral sphincter. Dyssynergy makes the bladder unable to empty completely, leading to an increase in bladder pressure during filling and emptying. [Self-Cathing]


Eakin Rings: Seals to protect the skin around a stoma. [Self-Cathing]

Early Intervention: A system of services to promote a child’s age-appropriate growth and development, specifically during critical early years. [Cerebral Palsy, Hearing Loss]

EBV (Epstein Barr Virus): A very common type of virus. Infection in infants causes few if any noticeable symptoms, while infection in young adults can lead to mononucleosis. [Transplant]

Echocardiogram (ECHO): A test that uses sound waves to create a moving picture of the heart. [Transplant]

ECMO: An advanced technology that functions as a replacement for a critically ill child’s heart and lungs. It’s used to support a child who is awaiting surgery, or to give a child’s vital organs time to recover from heart surgery or disease. [Transplant]

Edema: Swelling in the body’s tissues caused by a build-up of fluid, most often in the feet, ankles, face, eyelids or abdomen. [Vascular Anomalies]

EKG: A test that measures the electrical activity of the heart. [Transplant]

Embolization: Placement of a catheter in a blood vessel through which a device or special material is injected to close the blood vessel. Used by interventional radiologists to stop or prevent bleeding and to treat other problems, such as an arteriovenous malformation. [Vascular Anomalies]

Endometriosis: A medical condition where cells from the lining of the uterus grow in other areas of the body. It can cause pain, irregular bleeding, and problems with infertility. [Self-Cathing]

Enoxaparin: A medication that prevents blood clotting. [Vascular Anomalies]

Enteral Nutrition: An alternative to parenteral nutrition for patients with a functional GI tract, but for whom regular oral feeding is limited or inadequate or poorly tolerated. Patients on enteral therapy receive nutrition via a tube (such as a G Tube or J Tube) placed into the functioning portion of their digestive system. [Transplant]

Epiphysiodesis: A procedure which interrupts the growth plate of a longer limb or digit to stop it from growing. This can be used for patients with leg-length discrepancy in order to make both legs the same length. [Vascular Anomalies]

Extubate: The removal of a tube used in intubation. [Self-Cathing, Transplant]


Failure to Thrive: The failure to gain sufficient weight, usually occurring during infancy. [Self-Cathing]

Famotidine: An antacid, used to treat problems related to excessive stomach acid. [Self-Cathing]

Fibroadipose Vascular Anomalies: Vascular Anomalies relating to or containing fatty and fibrous structure.[Vascular Anomalies]

Flagyl: An antibiotic medication used to treat bacterial infections of the vagina, stomach, skin and joints. [IBD]

Fleet: A fluid used to clean out the bowels before surgery. [IBD]

Flolan: A medication used to treat pulmonary hypertension. It acts as a vasodilator (something that causes blood vessels to widen) to relieve pressure in the pulmonary arteries. [Transplant]

Fluoroscopy: A study of moving body structures using a continuous X-ray beam passed through the body.[Vascular Anomalies]

FM System: Frequency Modulation system, an Assisted Learning Device (ALD) that improves listening in noise or in large group environments by transmitting sound via FM radio signals from a microphone used by the person speaking (or sound source, such as a television) to a student. A student may receive the signal through strategically placed speakers (sound field system) or through a direct connection to his or her personal listening device. [Hearing Loss]

Foley Catheter: A thin tube inserted into the bladder, allowing continuous draining of urine into a collection bag (called a Foley bag). [Self-Cathing]

Fundoplication: A procedure performed to reduce heartburn caused by acid reflux. [Transplant]

Furosemide: A diuretic (medication that increases the production of urine) often used in the treatment of congestive heart failure and edema [Vascular Anomalies]


Gastronomy Tube (G-Tube) : A tube inserted through the abdomen that delivers nutrition directly to the stomach. [Cerebral Palsy, Vascular Anomalies, Transplant]

Gastroschisis: A birth defect of the abdominal wall. [Transplant]

Glomuvenous Malformation: The most common familial type of venous malformation caused by mutations in the glomulin gene. Glomuvenous malformations are often superficial and painful to touch. [Vascular Anomalies]

GoLYTELY: A solution used to clean out the bowels before surgery. [IBD]

Gorham Disease: A disease characterized by the progressive loss of bone caused by lymphatic malformations. [Vascular Anomalies]

Guanfacine: A medication used to treat high blood pressure and ADHD. [ADHD]


Hard of hearing: Term typically used to discuss the ability to hear at a level sufficient to process linguistic information through listening. [Hearing Loss]

Hearing Aid: A small device that fits in or on the ear to assist a partially deaf person to amplify sound. [Hearing Loss]

Hearing Loss: A medical term used to describe an individual’s inability to hear. This can be a range from mild to profound. [Hearing Loss]

Hearing Impaired:  A term commonly used to refer to people who are deaf and hard-of-hearing.  While this term is used in federal laws and definitions, organizations and institutions representing deaf and hard of hearing people have rejected this term as it is pathology centered.  The recommended terms are deaf and hard of hearing. [Hearing Loss]

Hearing Levels: Average decibel level used to describe varying degrees of hearing loss based on audiologic evaluation. Hearing within normal limits/No hearing loss- 0 to 15 dB, Slight- 16 to 25 dB, Mild- 26 to 40 dB, Moderate- 41 to 55 dB, Moderately severe- 56 to 70 dB, Severe- 71 to 90 dB, Profound- 91dB+. [Hearing Loss]

Hemangioma: A benign vascular tumor that usually appears as a red birthmark anywhere on a baby’s body within one to two weeks of birth. Most infantile hemangiomas don’t cause problems and go away without treatment. They grow rapidly for the first few months of life and then begin to shrink and fade and continue to regress into school age. [Vascular Anomalies]

Hemodialysis: A process used to remove waste from the urea, restore balance of electrolytes in the blood, or eliminate extra fluids from the body. [Transplant]

Hemolytic Uremic Syndrome (HUS): A disease that attacks the body’s red blood cells. HUS is the most common cause of sudden acute kidney failure in children. Many children recover with no permanent damage. [Transplant]

Hepatic Artery Thrombosis: A complication of orthotopic liver transplantation. [Transplant]

Hepaticojejunostomy: A surgery connecting the small bowel (jejunum) and the liver (hepatis). In children, this type of surgery is most commonly performed for benign diseases that affect the ducts that ordinarily drain bile produced by the liver. [Transplant]

Hepatoblastoma: A rare cancerous tumor originating in the liver. [Transplant]

HIDA Scan: A special chemical is injected into a vein, then pictures are taken to see if it is excreted normally by the liver, just as bile would be. This test is done to determine if the biliary system is working correctly. [Transplant]

Histoplasmosis: An infection of the lungs that can be serious if spread through the body. [Transplant]

Hypertrophy: Increase in the volume of an organ or tissue due to enlargement of its component cells.[Vascular Anomalies]

Hippotherapy: A form of therapy with the help of a horse. [Cerebral Palsy]

Hydronephrosis: A condition that occurs when urine does not drain appropriately from the kidney to the bladder, causing swelling of the kidney. In severe cases, hydronephrosis may lead to loss of kidney function. [Self-Cathing]

Hydrophilic Catheter: A type of catheter with a special coating that absorbs water, increasing lubrication in order to ease insertion. [Self-Cathing]

Hyperbaric Oxygen: Therapy involving breathing pure oxygen through a tube or in a pressurized room. [Cerebral Palsy]

Hyperplasia: Enlargement of an organ or tissue due to increased reproduction rate of its cells. [Transplant]

Hypoglycemia: Low blood sugar. [Diabetes]


IBS: Irritable Bowel Syndrome. [IBD]

IEP: Individualized Education Plan, A written plan or program developed to ensure that a child (age 3-21 years of age) who has a disability and is identified as eligible under the law receives specialized instruction and related services. An IEP is developed by a team of professionals (e.g., teachers, therapists) and the child’s parents. This document describes the child’s present level of function, learning needs, and necessary services/support required for academic progress. The IEP is reviewed and updated yearly, at a minimum. [ADHD, Cerebral Palsy, Transplant]

Ileostomy: A procedure in which the small intestine is brought to the surface of the abdominal wall through a surgically created opening. The digested contents of the small intestine now pass out this opening rather than continuing to the large intestine. [Self-Cathing]

Immunosuppressant: A type of drug that suppresses an immune system response. These drugs are often used to prevent rejection of transplanted organs and tissues. [IBD, Transplant]

Inhaler: A portable device to administer a drug that is breathed in, used in case of asthma attacks or other breathing problems. [Asthma]

Insulin Pump: A small device that administers rapid-acting insulin into the body through a plastic tube. [Diabetes]

Interferon: A medication that affects the response of the immune system to viruses, bacteria, cancer, and other foreign substances that invade the body. [Vascular Anomalies]

Intralesional: An injection directly into a lesion. [Vascular Anomalies]

Intubate: Intubation is the placement of a flexible tube through the mouth and into the trachea (windpipe). Intubation assists the patient with breathing, protects the patient’s airway, and/or is sometimes used to administer medications. [Self-Cathing, Vascular Anomalies, Transplant]

Involute: To curl up. [Vascular Anomalies]

ITP: Ideopathic thrombocytopenic purpura. [Transplant]

Itraconazole: An antifungal medication.[Transplant]

IVC Filter: A medical device placed in the inferior vena cava (one of the bodies’ major veins) to prevent pulmonary embolism. [Vascular Anomalies]


J Pouch: A pouch surgically inserted in the place of the large intestine used to treat ulcerative colitis. [IBD]

J Tube: A tube inserted through the abdomen that delivers nutrition directly to the jejunum (the middle section of the small intestine). [Transplant]

JP Drain (Jackson Pratt Drain): A tube placed in the abdomen during surgery that drains fluid from the pelvis to decrease the risk of infection. [Transplant]


Kaposiform Hemangioendothelioma (KHE): A rare benign vascular tumor. [Vascular Anomalies]

Kasai Procedure (Kasai Portoenterostomy): One of two common procedures used to treat a biliary atresia. During a Kasai procedure, damaged bile ducts are replaced with sections of healthy intestine. [Transplant]

Kasabach-Merritt Phenomenon: A rare disease in which a vascular tumor leads to decreased platelet count and other bleeding problems. [Vascular Anomalies]

Kegels: A type of exercise that involves contracting and relaxing the muscles of the pelvic floor, which support the uterus, bladder, and bowel. These exercises can be helpful in preventing urinary incontinence. [Self-Cathing]

Ketoacidosis: A complication related to diabetes in which the body produces excess blood acids. [Diabetes]

Klippel-Trenaunay Syndrome: Combined vascular anomaly present at birth, usually in a lower limb, composed of abnormal capillaries, lymphatics and veins and usually associated with overgrowth of the affected limb. [Vascular Anomalies]

KT: See Klippel-Trenaunay Syndrome. [Vascular Anomalies]

KTS: See Klippel-Trenaunay Syndrome. [Vascular Anomalies]

KUB: An X ray of the abdomen used to identify kidney stones and digestive problems, such as constipation. KUB stands for Kidney, Ureters, and Bladder. [Self-Cathing]


Lactulose: A medication used to treat constipation. [Self-Cathing]

Lansoprazole: A medication used to treat heartburn. [Self-Cathing]

Larynoscopy: An examination to look at the back of the throat, voice box, and vocal cords.[Vascular Anomalies]

Laser: A technique used for treating some types of vascular malformations. There are many types of laser treatment, including endovenous laser ablation and pulsed dye laser. [Vascular Anomalies]

Laser Ablation: The process of removing material from a surface by irradiating it with a laser. [Vascular Anomalies]

Left Ventricular Assist Device (LVAD): A mechanical device used to assist or take over the function of the heart during heart failure. Ventricular Assist Devices are often used when a patient goes into heart failure and is awaiting transplant. [Transplant]

Lesion: Tissue with impaired function due to disease or injury. [Vascular Anomalies]

Line (Central and PICC): When a catheter (a long thin flexible tube) is inserted into a vein, until the end of the catheter enters a large vein near the heart. This line can be used for certain types of prolonged treatment, such as chemotherapy and total parenteral nutrition. A central line is inserted into a vein in the chest or neck, while a PICC (peripherally inserted central catheter) line is inserted into the arm. [Cerebral Palsy, Transplant]

Lipoma: A benign tumor made up of fat tissue. [Vascular Anomalies]

Lipomyelomeningocele: A type of spina bifida that involves a fatty mass growing into the spinal cord. Treatment involves surgically detaching, or de tethering, the fat from the spinal cord. [Self-Cathing]

Lithotripsy: A medical procedure that breaks up stones in the kidney, bladder, or ureters using shock waves. [Self-Cathing]

Loperamide: A medication used to treat diarrhea. [Self-Cathing]

Lymphadenitis: An infection of the lymph glands. [Self-Cathing]

Lymphangiogram: An x-ray of the lymph nodes and lymph vessels. [Vascular Anomalies]

Lymphangioma: See Lymphatic Malformation. [Vascular Anomalies]

Lymphatic Malformation (LM): Vascular malformation of the lymphatic vessels seen in various forms from cysts to sponge-like lesions that can affect soft tissues, organs, and bones. [Vascular Anomalies]

Lymphedema: Malformation of lymphatic vessels causing accumulation of protein-rich fluid in the tissue spaces. [Vascular Anomalies]

Lymphocintigraphy: An imaging technique used to identify the lymph drainage basin, determine the number of sentinel nodes, differentiate sentinel nodes, locate the sentinel node, or mark the sentinel node. [Vascular Anomalies]


Macrocystic: When the cysts that comprise a lymphatic malformation are large. [Vascular Anomalies]

Magnetic Resonance Imaging (MRI): A technology that uses a magnetic field and radio waves to produce three-dimensional images of the inside of the body. [Cerebral Palsy, Vascular Anomalies]

Mannitol: A medication that increases the rate of urine production. [Self-Cathing]

MassHealth: Massachusetts Medicaid program. [Asthma]

Mast Cell: A cell filled with basophil granules.[Vascular Anomalies]

Meatal Stenosis: A narrowing in the opening of the urethra, the tube through which urines leaves the body. [Self-Cathing]

Meningocele: A form of spina bifida involving a protrusion of the meninges (membranes that cover the brain and spinal cord) through a defect in the spinal column. This creates a sac filled with fluid, which can lead to a large mass on the back. The spinal cord typically remains intact. [Self-Cathing]

Microcystic: When the cysts that comprise a lymphatic malformation are small. [Vascular Anomalies]

Milrinone: A drug often used in patients experiencing heart failure. [Transplant]

Mitochondrial Disease: A type of chronic disease in which the body’s cells have difficulty making energy. [Transplant, Self-Cathing]

Mitrofanoff (or Appendo Vesicostomy): A surgically created catheterizable channel, an alternative to cathing through the urethra. The channel goes from the bladder to the abdominal wall, usually through the belly button. [Self-Cathing]

Mondini Dysplasia: An abnormality of the inner ear associated with sensorineural hearing loss. [Hearing Loss]

Myelodysplasia: See spina bifida. [Self-Cathing]

Myelomeningocele: A severe form of spina bifida in which the backbone and spinal cord fail to close, resulting in an exposed protruding mass. This mass contains meninges (membranes that cover the brain and spinal cord), portions of the spinal cord, and nerves. [Self-Cathing]


NAMI: National Alliance on Mental Illness. [ADHD]

Nasogastric (NG) Tube: A plastic tube that is inserted through the nose and throat into the stomach. NG-tubes provide nourishment for patients who are unable to take food orally. [IBD, Transplant, Vascular Anomalies]

Nebulizer: A device used to administer medication to be inhaled, commonly used to treat cystic fibrosis, asthma, COPD and other respiratory diseases. [Asthma, Transplant]

Nephrology: The branch of medicine focused on the kidneys. [Self-Cathing]

Neuropsych Exam: Tests specifically designed to test psychological functioning linked to a particular structure of the brain. [ADHD]

Nevus: A pigmented skin lesion [Vascular Anomailes]

Non Ambulatory: Confined to a bed, not able to walk. [Cerebral Palsy]

Novocain: A local anesthetic. [Hearing Loss]


Obstructive Uropathy: A backup that occurs when urine cannot drain through a ureter. [Transplant]

Occupational Therapy: A form of rehabilitative therapy that focuses on the performance of activities required for daily life. [Cerebral Palsy]

Omegaven: A supplemental nutrition solution containing large amounts of Omega 3 fatty acids that is sometimes administered intravenously (method not FDA approved). [Transplant]

Omeprazole: A medication used to treat heartburn. [Self-Cathing]

Oscillator: A device for generating oscillating electric currents by non-mechanical means. [Transplant]

Ostomy: A surgically created opening in the abdomen which allows for the drainage of bodily waste. This opening is also called a stoma. Ostomies are often used in the treatment of digestive or urinary system diseases. [Transplant]

Ostopenia: Reduced bone mass, of lesser severity than osteoporosis.

Oxymetry Monitor: A device that measures heart rate and oxygen saturation. [Self-Cathing]

Oxybutynin: A medication used to treat symptoms of an overactive bladder, such as frequent or uncontrolled urination. Oxybutynin works by slowing bladder muscle contractions. [Self-Cathing]


Pantoprazole: A medication used to treat heartburn. [Self-Cathing]

Parent/Infant Toddler Program: Program offering intervention services to meet the needs of disabled young children. [Hearing Loss]

PDM: Personal Diabetes Manager. [Diabetes]

Percutaneous Tibial Nerve Stimulation (PTNS): A treatment for overactive bladder symptoms involving the electrical stimulation of specific nerves responsible for controlling bladder function. [Self-Cathing]

Pericytes: Elongated, contractile cells found wrapped around the endothelial cells of cappilaries and venules throughout the body. [Vascular Anomalies]

Peripherally Inserted Central Catheter (PICC) Line: When a catheter (a long thin flexible tube) is inserted into a vein, until the end of the catheter enters a large vein near the heart. This line can be used for certain types of prolonged treatment, such as chemotherapy and total parenteral nutrition. A central line is inserted into a vein in the chest or neck, while a PICC (peripherally inserted central catheter) line is inserted into the arm. [Cerebral Palsy, Vascular Anomalies]

Periprocedural: Occuring soon before, during, or soon after the performance of a medical procedure.[Vascular Anomalies]

Perirectal Abscess: A collection of pus in the tissue around the rectum. [IBD]

Peritoneal Hole: The space enclosed by the peritoneum. [Transplant]

Peritoneum: The membrane lining the cavity of the abdomen and covering the abdominal organs. [Transplant]

Peritonitis: An inflammation of the peritoneum. [Transplant]

PFTs: Pulmonary function testing [Transplant]

PHACES (Association): Letters denoting a condition consisting of posterior brain abnormalities (P); facial hemangioma (H); arterial anomalies in the neck and brain (A); cardiac anomalies (C); eye abnormalities (E); and split sternum or ridge above the umbilicus (S). [Vascular Anomalies]

Photopheresis: A form of therapy in which blood is treated with a photosynthesizing agent and irritated with specific wavelengths of light. [Transplant]

Plasmaphoresis: A process that involves filtering blood to remove plasma and antibodies. Plasmas are replaced before allowing the blood to re-enter the body. [Transplant]

Polyethylene Glycol Electrolyte Solution: A laxative, used to treat constipation. [Self-Cathing]

Port wine Stain: A common name for a capillary malformation. [Vascular Anomalies]

Posterior Urethral Valves (PUV): A condition occurring only in boys, involving excess flaps of tissue in the urethra. The excess tissue can cause blockage or backflow of urine, leading to swelling and damage in the urinary tract. [Self-Cathing]

Posttraumatic Stress Disorder (PTSD): A mental health condition triggered by experiencing or seeing a terrifying or traumatic event. [Facing Violence]

Prednisone: A medication used to treat inflammation in conditions such as allergic disorders, ulcerative colitis, and arthritis. [Asthma, IBD, Vascular Anomalies]

Pressors: Medication to increase blood pressure [Self-Cathing]

Pressure Garments: See Compression Garments. [Vascular Anomalies]

Prophylactic antibiotic: An antibiotic taken to prevent infections from forming. [Self-Cathing]

Propranolol: A beta blocker, a type of medication that reduces the workload on the heart and helps it to beat more regularly. It has more recently been used in the treatment of infantile hemangioma. [Vascular Anomalies]

Pseudomonas: A bacterial infection. [Self-Cathing]

PTLD (Post Transplant Lymphoproliferative Disease): A rare complication following heart transplant caused by an abnormal response from the immune system despite chronic immunosuppression due to post transplant drugs. PTLD is characterized by abnormal cells forming collections, usually in the lymph nodes. Suspicious nodes are surgically removed; some patients may require chemotherapy. [Transplant]

Pulmonary Embolism: A type of clot that travels through the bloodstream and into the lungs. [Vascular Anomalies]

Pulmonary Hypertension: High blood pressure in the arteries to the lungs. This condition makes it difficult for the heart to effectively pump blood through the body. Over time, this can weaken the heart and in some cases, may lead to the development of heart failure. [Transplant]

Pulmonary Veno Occlusive Disease: A rare form of high blood pressure in the arteries of the lungs. [Transplant]

Pyelonephritis (or Upper Urinary Tract Infection or Kidney Infection): A more severe infection in the urine that involves the bladder and one or both kidneys. This type of infection is typically associated with a fever. [Self-Cathing]


Quadriplegia: Also known as tetraplegia, paralysis that results in the loss of use of limbs. [Cerebral Palsy]


Rapamycin: See sirolimus. [Vascular Anomalies]

Reflux (or Vesicouretal Reflux): A condition in which the valve between the bladder and the ureters is faulty, allowing urine to flow backwards from the bladder into the kidneys. This can lead to bladder and kidney infection. [Cerebral Palsy, Self-Cathing]

Remicaide: A medication used to treat Crohn’s disease. [IBD]

Residuals (or Post Void Residuals): The amount of urine left in the bladder after urination. [Self-Cathing]

Reticular Hemangioma: An uncommon type of hemangioma occurring in the extremity. [Vascular Anomalies]

Ritalin: A medication used to treat ADHD and narcolepsy. [ADHD, Depression]

RSV (Respiratory Syncytial Virus): A virus that can cause upper and lower respiratory tract infections. It commonly causes bronchiolitis (inflammation of the lower respiratory tract) and pneumonia in small children and infants. [Transplant]


Sats (Oxygen Saturation): The percent of oxygen content in the blood. [Transplant]

Sclerosant: A medication injected during sclerotherapy. [Vascular Anomalies]

Sclerosing Agent: See sclerosant. [Vascular Anomalies]

Sclerotherapy: An interventional radiology technique involving injection of a sclerosant medication into an abnormal vessel in order to destroy its endothelial lining (the thin layer of cells on the interior of the blood vessel), resulting in inflammation and closure of the abnormal vessel. [Vascular Anomalies]

Scoliosis: A curvature of the spine. [Cerebral Palsy]

Senna: A laxative, used to treat constipation. [Self-Cathing]

Sensorineural: As related to hearing loss, caused by a lesion or disease of the inner ear. [Hearing Loss]

Short Gut: A condition where the child doesn’t have enough small intestine, and therefore can’t extract enough nutrients it needs. [Transplant]

Sigmoidoscopy: Procedure used to see inside the sigmoid colon and rectum. [IBD]

Sinus Pericranaii: A disorder characterized by an epicranial venous malformation of the scalp.[Vascular Anomalies]

Sirolimus: An immunosuppressant drug more recently used in the treatment of certain vascular malformations and tumors. [Vascular Anomalies, Transplant]

Skin Graft: Skin that is removed from one part of the patient’s body and moved to another area to cover an open wound or burn. [Vascular Anomalies]

Sock: See Compression Garments [Vascular Anomalies]

Sped PAC: Special Education Parent Advisory Council [Self-Cathing]

Sphincter: A circular muscle that normally keeps a body passage closed and relaxes when needed to allow it to open. For urine to exit the bladder, both the involuntary internal sphincter and voluntary external sphincter must be opened. Problems with these muscles can lead to incontinence or urinary retention. [Self-Cathing]

Spina Bifida (or Myelodyplasia): A complex birth defect in which the spine fails to close during the first few months of fetal development. Spina bifida is associated with a variety of neurological impairments, including orthopedic problems and incontinence of urine and bowels. There are three distinct types of spina bifida, in order of ascending severity: spina bifida occulta, meningocele, and myelomeningocele. [Self-Cathing]

Spina Bifida Occulta: A mild form of spina bifida, in which at least one backbone is malformed, but the nerves and spinal cord do not protrude, and skin usually covers the defect. [Self-Cathing]

Spinal Fusion: A surgical procedure to correct problems with the vertebrae. [Self-Cathing, Cerebral Palsy, Self-Cathing]

Splenectomy: Surgical procedure to remove the spleen. [Transplant]

Stent: A small tube that is inserted into a blood vessel or other hollow structure. It is often used to increase flow through narrow or blocked passageways. [Transplant]

Stockings: See Compression Garments. [Vascular Anomalies]

Stoma: A surgically created opening connecting a part of the body cavity to the body surface, as in a Mitrofanoff procedure. [IBD, Self-Cathing]

Strattera: A medication used to treat ADHD. [ADHD]

Sturge-Weber syndrome: A syndrome characterized by a capillary malformation on the face in association with eye abnormalities and/or anomalies of the surface of the brain. [Vascular Anomalies]

Sulfasalazine: A medication used to treat ulcerative colitis and rheumatoid arthritis. [IBD]

Suprapubic Tube (or Suprapubic Catheter): A tube surgically inserted through the abdomen and into the bladder, used to continuously drain urine. A suprapubic tube is often used during recovery from bladder surgery. [Self-Cathing]


Tacrolimus: An immunosuppressant. [Transplant]

Tethered Spinal Cord (or Tethered Cord): A condition in which the spinal cord is abnormally attached to tissues around the spine, potentially leading to nerve damage. Tethered spinal cord is often associated with spina bifida. Symptoms can emerge over time and include problems with back pain, muscle weakness in the legs, loss of motor control, and incontinence of urine and bowels. [Self-Cathing]

Tetracycline: A type of sclerosing agent. [Vascular Anomalies]

Tolterodine: A medication used to treat symptoms of an overactive bladder, such as frequent or uncontrolled urination. Tolterodine works by slowing bladder muscle contractions. [Self-Cathing]

Total Parenteral Nutrition (TPN): When nutrients are supplied directly to the bloodstream, bypassing the digestive system. TPN is used when patients cannot digest food or take nutrients orally. [Transplant]

Tracheotomy/Tracheostomy (Trach): When a small incision is made in the trachea (windpipe) to allow patients to breathe through the stoma (opening) or by attached tube. This allows for breathing without the use of the nose or mouth. [Vascular Anomalies, Transplant]

Treprostinil: An immunosuppressant. [Transplant]

Triplegia: A medical condition characterized by the paralysis of three limbs. [Cerebral Palsy]


Ultrasound: A diagnostic medical imaging technique used to visualize internal organs. Ultrasound is commonly used during pregnancy to examine the developing baby. It may also be used during urological assessment to examine the kidneys or bladder. [Vascular Anomalies, Self-Cathing]

Ureter: A tube that transports urine from where it is made in the kidney down to the bladder. A ureter has muscle cells within its wall in order to help propel urine toward the bladder. [Self-Cathing]

Ureteral Reimplantation: Surgical repositioning of the ureters within the urinary bladder in order to treat and eliminate vesicoureteral reflux. [Self-Cathing]

Urethra: A tube that transports urine from the bladder to the outer surface of the body. [Self-Cathing]

Uremia: A condition involving abnormally high levels of waste products in the blood. [Transplant]

Urinary Retention: The inability to empty the bladder. Acute retention causes extreme discomfort and must be relieved with catheterization to prevent bladder damage and/or kidney injury. [Self-Cathing]

Urodynamics: A bladder function test that determines pressures in the bladder during storage and emptying. [Self-Cathing]

Uroflow: A test that measures the amount of urine voided, how fast the urine comes out, and how long it takes to empty the bladder. Results from this test can show irregularities in the function of the muscles that regulate the urine flow. [Self-Cathing]


V.A.C. System: A method of negative-pressure wound therapy using a vacuum dressing to promote healing. [Vascular Anomalies]

Vascular Malformation: A benign (non-cancerous) lesion that is present at birth. It is an error in vascular development affecting veins or arteries or capillaries or lymphatic vessels or any combination of these vessels. [Vascular Anomalies]

Venous malformation: A malformation of the veins resulting in dilated veins that have thin walls and abnormal smooth muscle layers. [Vascular Anomalies]

Vesicles: Small, raised skin lesions associated with lymphatic abnormalities that can bleed or leak clear fluid. [Vascular Anomalies]

Vesicostomy: A surgically created opening in the lower abdomen that allows urine to drain continuously from the bladder. [Self-Cathing]

Vincristine: A chemotherapeutic medication also used in the treatment of certain vascular anomalies. [Vascular Anomalies]

Voiding Cystourethrogram (VCUG): A bladder x ray that assesses anatomy of the bladder and urethra. This study also allows determination of whether or not vesicoureteral reflux is present. [Self-Cathing]

VSD (Ventral Septal Defect): One or more holes in the wall that separates the right and left sides of the heart. [Transplant]


Wellbutrin: A medication used to treat depression and seasonal affective disorder. [ADHD]

Wheat Dextrin: A dietary fiber supplement. [Self-Cathing]




Zoloft: A medication used to treat depression, obsessive compulsive disorder, posttraumatic stress disorder, premenstrual dysphoric disorder, social anxiety disorder and panic disorder. [Cerebral Palsy]