Common CDH Terms

A | B | C | D | E | F | G | H | I | J | K | L | M | O | P | Q | R | S | T | U | V | W | X | Y | Z


# A

(Arterial Blood Gas) a blood gas drawn from an artery; usually from the patient's arm, leg, or central line.

AFP Test
(alpha-fetoprotein) a blood test performed on pregnant women that can possibly identify fetal abnormalities by measuring the maternal serum level; usually performed at 16-18 weeks of gestation.


Agenesis of the Diaphragm
complete absence of the diaphragm.

a medical procedure performed on pregnant women that can identify possible fetal abnormalities by running lab tests on amniotic fluid. It involves inserting a needle through the woman's abdomen and into the amniotic sac and then removing an amount of amniotic fluid for testing.

(pain killer) medication that relieves pain and discomfort (Tylenol, Acetaminophen, Aspirin, Tegretol, ect).

a medication that prohibits growth of or destroys microorganisms that cause infections (Amoxicilline, Amphotericin, Erythromycin, Gentamicin, Azapen, Staphcillin, Vancomycin, Tetracycline, etc.)

a blood vessel that carries blood from the heart to the body's organs.

# B

A procedure that uses an Ambu Bag to manually pump air into a patient's lungs.

Blood Gases
a measurement of the amount of carbon dioxide, oxygen, and acid in a patient's blood. These measurements are needed to determine the amount of oxygen and ventilator support that a patient needs.

Blood Saturation
the percentage of oxygen contained in the patient's blood. For a healthy person, 100% is ideal.

Blood Transfusion
carefully screened blood given to a patient to replace blood lost during a surgical procedure.

Bochdaleck Hernia
(Foramen of Bochdaleck) an opening through the left diaphragm between the chest cavity and abdominal cavity toward the back of the body. It is the most common form of diaphragmatic hernia.

abnormally low heart rate.

# C

A blood vessel that carries blood between the smallest arteries and the smallest veins.

Carbon Dioxide
gas exhaled by the lungs after oxygen is absorbed. Insufficient exchange of oxygen and carbon dioxide can cause serious problems for the patient.

(Capillary Blood Gas) a blood gas drawn from a capillary blood vessel; usually from the patient's toe or finger.

liquid measurement used by many hospitals. 30cc = 1 ounce.

Cental Line
a more permanent type of I.V., surgically placed in an artery or vein, yet less evasive than a broviac.

trained person who can provide you with religious support. Most hospitals either have, or can find, a chaplain within your religion. Many can perform dedications and baptisms at a patient's beside.

Chest P.T.
physical therapy that involves "beating" on the patient's chest. Though it may be noisy and alarming to you, it is an essential part of care to help prevent pneumonia.

Chest Tube
a drainage tube surgically placed in the patient's chest and connected to a suctioning device to prevent fluid from collecting in the chest cavity.

any long-term medical problem.

Chronic Care Facility
a facility that provides long-term care for patients that cannot receive necessary medical care in their own homes.

Congenital Abnormality
a defect present at birth.

Continuous Positive Airway Pressure which helps a patient to maintain the necessary pressure needed to keep his/her lungs inflated.

a sample of blood, secretions, stool, urine, or other physical matter taken from the patient and sent to a lab to look for disease and infection. If the culture is positive, it will be treated with different medications to find which can kill the bacteria present.

# D

Medications that increase the amount of urination; used to avoid or decrease large amounts of fluid build-up or edema; patients may need extra potassium chloride while on diuretics (Edecrine, Diurel, Lasix, Spirolactone, Hydrochlorothiazide etc.)

(Do Not Resuscitate) order given to the medical staff by a patient's next of kin if they decide it would be in the patient's best interests to let he/she die naturally.

# E

(Extracorpeal Membrane Oxygenation) a very large and complex machine that takes over the work of the patient's heart and lungs. A very large catheter, a plastic tube, is placed in an artery in the patient's neck. Blood is then removed from the patient's body, oxygenated, and returned to the patient.


Endotracheal Tube
(E.T.-Tube) a tube placed through the patient's nose or mouth to help provide mechanical or manual ventilation.

a medication that can be used to restore cardiac rhythm during cardiac arrest.

# F

Familial Abnormalities
Birth defects that occur in two or more family members.

a doctor training to become a specialist in a given field of medicine.

Femoral Line
a central line placed in an artery near the patient's groin.

Folley Catheter
a plastic tube inserted into a patient's ureter to aid in urination and taking "clean" urine cultures.

# G

Gastointestinal Reflux
An illness that occurs when the stomach contents "backup" into the esophagus, where they can possibly be aspirated (inhaled) into the lungs. This is a common problem for babies born with CDH that can be controlled with medications and/or surgery (Nissen fundoplication).

Genetic Counseling
counseling that involves providing information to at-risk parents who are expecting a child or planning a pregnancy or who have a child with birth defects or chromosomal abnormalities. It informs parents of their risks of fetal abnormalities in present or future pregnancies. It is advised for couples who are older or who have family histories of birth defects or chromosomal abnormalities.

a specialist in the study of genetic abnormalities and birth defects.

# H

A protrusion of an organ or tissue through a weak area in muscle or other tissue that would normally contain it.

# I

In-Utero Repair
Procedure in which the diaphragm is repaired while the mother is still pregnant. It is experimental, done in only a few hospitals, and certain guidelines have to apply.

# J

# K

(kg) 1kg = 2.2 pounds.

# L

Lab Technician
An individual trained on how to draw and analyze blood and other body fluids.

Lung Hypoplasia
- failure of one or both lungs to develop fully.

# M

Medical Student
A student in medical school training and taking courses to become a doctor.

Medical Team
doctors, nurses, technician, dieticians, and therapists assigned to a patient's care.

Morgagni Hernia
(Foramen of Morgagni) diaphragmatic hernia occurring near the front of the body, near the breastbone.

# N

Medications that cause the patient to sleep; highly addictive and must be weaned slowly (Fentynal, Methadone, Codeine, Morphine, etc.)

Nitric Oxide
a gas that is used as an inhalant in order to try to enhance lung growth and recovery

Nissen Fundoplication
a surgical procedure where the opening between the lower end of the esophagus and the top part of the stomach is narrowed to prevent stomach contents from flowing backward into the esophagus.

(nasogastric tube)-a plastic tube inserted through the patient's nose into the patient's stomach or intestines to aid in digestion when the patient cannot eat by mouth.

(Neonatal Intensive Care Unit) a high-tech newborn nursery for critically ill babies.

individuals trained to take care of a patient's hygienic and medical needs, giving medications, inserting IV's, and recording medical information.

trained professionals with special knowledge about the necessary nutrients needed for a patient's growth and development.

# O

# P

A medication that temporarily paralyzes the patient's muscles to keep him/her still when their condition can be threatened by movement (as when on ECMO). It should not be given without a sedative or the patient's mind will still be awake.

(Pediatric Intensive Care Unit) a hospital ward for critically ill children.

Physical Therapists
individuals who help patients recover muscle-tone lost during their illnesses.

illness caused by bacteria which causes fluid buid-up in the patient's lungs.

excess amount of amniotic fluid; usually an indicator of possible fetal problems or abnormalities.

an individual with training in human behavior and development who can asses a patient's development and assist the patient's family as they adjust to having a sick child.

a machine that reads the patient's heart rate and blood saturation levels through a probe taped to the patient's toe or finger.

# Q

# R

A doctor in training under the guidance of a more experienced physician.

Respiratory Therapists
trained individuals who assist in the operation of ventilators and perform procedures which aid a patient's breathing and oxygen intake.

Room Air
a term used to describe the fact that a patient is breathing the same amount of oxygen that normal, healthy people would breathe; 21%.

# S

A medication that calms and/or puts the patient to sleep so that he/she will not feel pain or discomfort (Versed, Ativan, Valium, Chloral Hydrate, etc.)

infection (septic-infected).

Social Worker
an individual who helps families deal with their reactions to having a sick child and helps them make necessary housing, transportation, and financial arrangements.

a procedure during which a small catheter, attached to a suction machine, is inserted into a patient's trach or endotracheal tube to remove secretions that a patient could not normally cough out.

# T

TPN and Lipids
High calorie I.V. fluids used for long-term nutrition.

Tracheal Occlusion
a new procedure that like in-utero repair, involves an operation on the mother during pregnancy. Rather than correcting the diaphragm, this procedure clamps off the baby's trachea, causing the lungs to grow and push the organs back into the abdominal cavity.

# U

# V

A blood vessel that carries unoxygenated blood to the lungs from the body's other organs.

# W

# X

X-Ray Technician
A trained individual who operates both portable and stationary x-ray equipment.

# Y

# Z

News from CHERUBS

2018 Light Ups for CDH Awareness Day

Buildings and Landmarks in the United States and Canada lit up blue, pink and yellow on April 19th for CDH Awareness Day.  The CN Tower will light up on April 28th in Toronto, Canada.

The following locations lit up for CDH Awareness Day in 2018:


CDH International Telethon on April 19th

On CDH Awareness Day, April 19th, CDH International interviewed families, researchers, doctors and volunteers as they all shared stories, tears and trials as we raised awareness and money for Congenital Diaphragmatic Hernia via live video on Facebook.  We had guests live from around the globe, truly an international day of CDH Awarneess.  The goal was to reach $50,000 over 15 hours during a live Facebook telethon.  Donors were able to make a donation by calling in, donating on any of the member's Facebook telethon fundraisers or directly on the website.  As the telethon closed, CDH International surpassed the goal bringing in $51,388.  This number is on the rise, where the final total will be announced on April 30th.  Facebook fundraisers for the telethon are still ongoing and the charity waits for any checks arriving by mail.


2018 Salt Lake City Bees Game for CHERUBS

On Saturday, April 21, 2018, at Smith's Ballpark in Salt Lake City, Utah, CHERUBS held a CDH Awareness Ballgame. This was the 5th annual CDH Awareness ball game for the charity.  The game has been a yearly celebration of CDH Awareness Month. CHERUBS members, family and friends got together for a great night of baseball, meeting other CDH families and raised a ton of CDH Awareness. Abby Rush, 15 year old CDH survivor, got to throw in the 1st pitch of the night and kick off the celebration for the charity.  Wearing her wings, Abby threw the 1st pitch like a pro and raised a ton of CDH Awareness.


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