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Coarctation of the Aorta

  • Boston Children's Hospital is here with expert help if your infant or child has been diagnosed with coarctation of the aorta (COA). While this condition is very serious, Boston Children’s has vast experience treating infants and children who have COA—with excellent short- and long-term outcomes. These pages will give you a basic understanding of the condition to help you plan for, and cope with, this rare congenital heart defect. Normal HeartCOARC

    In the infant or child with a normal heart, oxygen-poor (blue) blood returns to the right atrium from the body, enters the right ventricle and is pumped through the pulmonary artery into the lungs to receive oxygen. The oxygen-rich (red) blood returns to the left atrium from the lungs, passes into the left ventricle and is pumped out to the body through the aorta.

    COARC

    In COA, there’s a narrowing of the aorta, the main artery that delivers oxygen-rich (red) blood to the body. The narrowing restricts the amount of oxygen-rich blood that can travel to the lower part of the body.

    • Narrowing can occur anywhere in the aorta, but usually occurs in the segment just beyond the aortic arch—beyond the vessels that bring blood to the upper body, and before the vessels that bring blood to the lower body. This is why in COA, blood pressure in the arms will be high, and blood pressure in the legs and ankles will be low.
    • 75 percent of children with COA also have a bicuspid aortic valve—in which the aortic valve has two flaps (leaflets) instead of the usual three—as an accompanying (secondary) defect. (The aortic valve pulses blood from the left ventricle into the aorta.)
    • COA occurs in about 6 to 8 percent of all children with congenital heart disease, and occurs twice as often in boys as girls (as is the case with many “left heart” diseases). It also occurs in about 10 percent of girls who have Turner syndrome (a chromosomal abnormality).
    • The defect can be corrected with surgery or cardiac catheterization.
    • After correction, most children lead healthy lives but may need follow-up care.

    Please note: COA can occur as a defect by itself (in isolation), or in association with other defects, such as transposition of the great arteries, double outlet right ventricle or certain single ventricle defects. These pages will discuss COA as an isolated defect.

    How Boston Children’s Hospital approaches COA

    Our team in Boston Children’s Cardiac Surgery Department understands how distressing a diagnosis of coarctation of the aorta can be for parents. You can have peace of mind knowing that our surgeons treat some of the most complex pediatric heart conditions in the world, with overall success rates approaching 98 percent—among the highest in the nation for large pediatric cardiac centers. We use the following elements to provide the best possible outcomes:

    • accurate diagnosis and assessment: Subtle variations in the heart’s anatomy—such as the arrangement of the arteries that feed the heart—can negatively impact surgical outcomes if not identified ahead of time. We utilize the most advanced techniques available for precisely determining your child’s heart anatomy, with interpretation by highly experienced cardiologists.
    • sophisticated and effective therapies: Boston Children’s Congenital Heart Valve Program cares for children with congenital heart defects that involve absent or malfunctioning heart valves. Our surgeons have a strong record of excellence in heart valve repair and replacement, including minimally invasive techniques.
    • Babies with the most severe heart defects need emergency therapy. Our cardiac intensive care unit (CICU), cardiac catheterization labs and operating rooms are deal with the urgent needs of our smallest patients 24/7. Boston Children’s CICU was one of the first such units developed anywhere; professionals from many countries visit our CICU to learn advanced techniques of post-operative care.
    • experienced team of skilled professionals to perform surgery and other procedures:Children’s cardiac surgeons have vast experience in the surgical procedures used to repair this defect, and they work with nurses and doctors who are focused on providing expert care after surgery.  
    • close, expert medical follow-up: If you live in the Boston area, a Boston Children’s cardiologist will follow your child after surgical repair. If you live in another part of the United States or the world, a Boston Children’s cardiologist will work closely with your local cardiologist. Teen and adult patients with COA are followed by Boston Children’s cardiologists who have special training for adults with congenital heart problems.

    For more visual and audio information on COA, visit the COA section of our cardiovascular Multimedia Library.

    Coarctation of the aorta: Reviewed by Michael Freed, MD
    © Boston Children's Hospital, 2011

  • At Boston Children’s Hospital, we’re known for our science-driven approach. We’re home to the world’s most extensive pediatric research enterprise, and we partner with elite institutions around the world. But as specialists in family-centered care, we always remember that your baby is precious, not just a patient.

    Coarctation of the aorta is a challenging condition to treat. But as world pioneers in innovative heart care, Boston Children’s specialists are uniquely qualified to treat your child.

    What is COA?

    In COA, there’s a narrowing of the aorta, the main artery that delivers oxygen-rich (red) blood to the body.

    Although the narrowing can occur anywhere in the aorta, it’s usually found in the segment in the segment just beyond the aortic arch—beyond the vessels that bring blood to the upper body, and before the vessels that bring blood to the lower body. This is why in COA, blood pressure in the arms will be high, and blood pressure in the legs and ankles will be low.

    Why is COA a concern?

    The narrowing in the aorta restricts the amount of oxygen-rich blood that can travel to the lower part of the body; the left ventricle must pump under higher than normal pressure in order to get oxygen-rich (red) blood through the narrowed opening and out to the body. The left ventricle becomes thick (hypertrophied). If the muscle becomes too thick and is no longer able to function efficiently and handle its workload, it will eventually fail (congestive heart failure).

    Coarctation of the aorta causes several additional problems, including:

    • Blood pressure is higher above the narrowing, and lower below the narrowing. Older children may have headaches from too much pressure in the vessels in the head, or cramps in the legs or abdomen from too little blood flow in that region. Also, the kidneys may not make enough urine since they require a certain amount of blood flow and a certain blood pressure to perform this task.

      An extra word about the kidneys and blood pressure: The kidneys are among the organs that “control” blood pressure. In COA, the kidneys receive their blood supply just below the level of the coarctation, so the pulsing pattern of blood flow to the kidneys is disrupted. The kidneys interpret this abnormal flow as low blood pressure, so they send out chemicals/molecules that tell the body to increase the blood pressure.
    • The walls of the ascending aorta, the aortic arch or any of the arteries in the head and arms may become weakened by high blood pressure. Spontaneous tears in any of these arteries can occur, which can cause a stroke or uncontrollable bleeding.

    A bicuspid aortic valve—an aortic valve that has two flaps (leaflets) instead of the usual three—and a ventricular septal defect (VSD) can be accompanying defects to COA. COARC

    How common is coarctation of the aorta? 

    • Coarctation of the aorta occurs in about 6 to 8 percent of all children with congenital heart disease.
    • COA occurs twice as often in boys as girls (as is the case with many “left heart” diseases).

    What causes coarctation of the aorta? 

    • Coarctation of the aorta (COA) may be due to improper development of the aorta in the first eight weeks of fetal growth.
    • The condition may develop as a result of disrupted flow patterns in the heart associated with other abnormalities, and usually affecting the valves on the left side of the heart (mitral or aortic).
    • COA can also form when tissue from the ductus arteriosus (the in utero connection between the pulmonary artery and aorta that diverts blood away from the lungs to the placenta for oxygenation) migrates into the aorta. When the ductus closes at birth, the ductal muscle in the aorta contracts, narrowing the caliber (diameter) of the aorta.
    • Some congenital heart defects may have a genetic link—occurring due to a defect in a gene, a chromosome abnormality or environmental exposure, causing heart problems to occur more often in certain families. But most of the time this heart defect occurs by chance, with no clear reason for its development.

    How do you diagnose COA?

    The first line of diagnosis for COA is clinical exam, beginning with obtaining the child’s vital signs. The pediatric cardiologist obtains a four-limb blood pressure—measuring the blood pressure in both arms and both legs. (Part of the newborn discharge exam is to be able to feel four good pulses.)

    The first suspicion of a coarctation is when the doctor notes a lower blood pressure in the legs. The baby’s thigh or foot pulses will be weak and therefore difficult for the doctor to feel.

    Other tests that help with the diagnosis—or with planning for treatment—may include:

    • echocardiogram (echo, cardiac ultrasound): At Boston Children’s, the echocardiogram is the primary diagnostic tool to confirm a diagnosis of COA.
    • electrocardiogram (ECG or EKG): An EKG is useful for measuring the patient’s vital signs.
    • cardiovascular MRI (magnetic resonance imaging): We often use MRI to plan a catheterization procedure if the patient needs a balloon or stent.
    • chest x-ray: At Boston Children’s today, x-ray is only occasionally used to diagnose COA.

    Can COA be diagnosed prenatally, and is there an advantage to receiving a prenatal diagnosis?

    COA through cardiac ultrasound can sometimes be detected prenatally: The ultrasound can pick up the size discrepancy between the left heart and the right heart, as well as the narrowing of the aortic arch.

    But the aortic arch isn’t usually obstructed in the fetus because of the open ductus arteriosus (the prenatal connection that ensures blood flow between the aorta and the pulmonary artery), so there’s no need to treat the fetus in utero. The obstruction can become evident after birth once the ductus arteriosus closes.

    Being able to diagnose COA through prenatal cardiac ultrasound does give doctors a head-start in determining next steps. We can plan in advance for your baby’s delivery, and for his immediate stabilization and care once he’s born. Upon the baby’s birth, our team will bring together the pediatric and obstetric specialists needed for his care.

    The coarctation due to migration of ductal tissue into the aorta (see question on Causes, above) cannot be diagnosed until after birth, when the ductus closes.

    What are the signs and symptoms of COA, and when do they emerge?

    The more severe the narrowing, the more signs and symptoms a child will have, and the earlier the problem will be noticed. In infants, the onset of symptoms in a previously “fine” baby can be sudden and severe. (On the other end of the spectrum, mild narrowing may not cause any symptoms at all.)

    Common signs include:

    • heavy and/or rapid breathing
    • pale skin
    • sweating
    • irritability

    The most common physical finding for COA in an infant is that the baby’s femoral (thigh) or leg pulses (and possibly groin and feet pulses) are weak and difficult for the doctor to feel.

    In some cases, COA may not be noted until school-age, adolescence or even adulthood—often during a routine blood pressure test. As the child grows, his aorta will not grow at the same rate; so with the vessel’s relative narrowing later in life, signs and symptoms can appear, such as:

    • high blood pressure
    • nosebleeds
    • a heart murmur
    • headaches (from high blood pressure above the COA)
    • cramps in the lower sections of the body (from low blood pressure below the COA)

    How do you treat COA?

    Coarctation of the aorta is treated with repair of the narrowed vessel. Infants who are very sick and require care in the cardiac intensive care unit (CICU) may need emergency repair of the coarctation. Others who show few symptoms may have the repair scheduled on a less urgent basis.

    Surgery

    For most infants, surgery is the standard treatment. (A small percentage of infants treated surgically will need either a repeat surgery or a balloon dilation to stretch the narrowed area.) The surgeon cuts out the narrowed segment and sews the two healthy ends of the aorta back together, reconstructing the arch and establishing normal blood flow through the vessel.

    If your child also has a VSD, the surgeon will repair the defect at the time of the coarctation surgery. If there is a bicuspid aortic valve, it will need to be followed by the cardiologist to make sure that no stenosis (obstruction) or regurgitation (backwards flow) develops later.

    Cardiac catheterization (usually as a second procedure for older children)

    The cardiologist guides a small, thin, flexible tube (catheter) to the inside of the heart through a blood vessel in the groin. The doctor passes an inflated balloon through the narrowed section of the aorta to stretch it open. A small rigid metal tube, called a stent, may also be placed in the narrowed area after the balloon dilation to keep the aorta open.

    Why is surgery preferable for infants? When is catheterization or stenting useful?

    The fibrous band of abnormal tissue that creates the coarctation is not usually amenable to balloon dilation—it must be cut out surgically. Surgery also gives the surgeon a chance to neatly reconstruct the aortic arch.

    But with time, the repaired area itself can also become narrowed with fibrous tissue. As a second procedure, a catheterization/balloon dilation can be effective. In older children, teens or adults who are diagnosed for the first time, cardiologists might also insert a stent, since these patients are close enough to fully grown that they won’t outgrow the stent.

    Will my baby be OK?

    If your child’s COA is repaired in infancy—before there’s any permanent damage such as high blood pressure—the long-term outlook is excellent. Your child may need repeat surgery or catheterization if the repaired area re-narrows (re-narrowing occurs in up to 20 percent of infants in the first or second year after repair). But in general, most children who’ve had surgery for COA will live healthy lives, with activity levels, appetite and growth eventually returning to normal

    What about patients diagnosed in childhood or adulthood?

    Patients diagnosed later in life—in childhood or adulthood—who already have chronic high blood pressure need to be followed, and some will need to be treated for their high blood pressure. Once surgery repairs the COA, the thickening in the heart muscle (hypertrophy) that will have formed because of continued obstruction will usually become normal over time.

    Where can my child find care and support when he grows up?

    BACH is an international center for excellence, with physicians and services from Children’s, Brigham and Women’s Hospital and Beth Israel Deaconess Medical Center. The center promotes and supports clinical and scientific research for the advancement of care of these patients, and is a leader in the education of providers caring for this unique population.

    • The Adult Congenital Heart Association (ACHA) is a national not-for-profit organization dedicated to improving and extending the life of adults with congenital heart defects, now thought to number at least one million. The organization serves and supports many such adults, their families and the medical community, as well as conducting research and providing advocacy, outreach and education.

    FAQ

    Q: What is coarctation of the aorta (COA)?
    A:
    In COA, there’s a narrowing of the aorta, the main artery that delivers oxygen-rich (red) blood to the body. Although this narrowing can occur anywhere in the aorta, it’s usually found in the segment just beyond the aortic arch.

    Q: How common is COA?

    A: COA occurs in about 6 to 8 percent of all children with congenital heart disease. The defect occurs twice as often in boys as girls, as is the case with many “left heart” diseases.

    Q: If my child has COA, will he be OK?
    A:
    While coarctation of the aorta is very serious, Boston Children’s has vast experience treating infants and children with the condition—with generally excellent short- and long-term outcomes. Open-heart surgery at Boston Children’s has one of the highest success rates in the United States among large pediatric cardiac centers.

    Q: How does Boston Children’s treat newborns with COA?
    A:
    For most infants, surgery is the standard treatment. The surgeon cuts out the narrowed segment and sews the two healthy ends of aorta back together, reconstructing the arch and establishing normal blood flow through the aorta.

    But the repaired area can itself sometimes become re-narrowed, fibrous tissue (re-narrowing occurs in up to 20 percent of infants in the first or second year after repair). So, as a second procedure, a catheterization/balloon dilation can be effective.

    Q: How does Boston Children’s treat older children with COA?
    A:
    In older children, teens or adults who are diagnosed with COA for the first time, we might insert a stent (rigid metal tube), because these patients are close enough to fully grown that they won’t outgrow the stent.

    Q: What are the signs and symptoms of COA?
    A:
    The more severe the narrowing, the more signs and symptoms a child will have, and the earlier the problem will be noticed. (Mild narrowing may not cause any symptoms at all.) The most common signs in infants include:

    • irritability
    • pale skin
    • sweating
    • heavy and/or rapid breathing

    In some cases, coarctation can be detected in infancy. The most common physical finding for COA in an infant is that the baby’s femoral (thigh) or foot pulses are weak and difficult for the doctor to feel.

    In other cases, COA may not be noted until school-age, adolescence or even adulthood—usually because of an elevated blood pressure.

    Q: If my child has COA, what should I ask my doctor?
    A:
    If your child is diagnosed with coarctation of the aorta, you may feel overwhelmed with information. You may find it helpful to jot down questions as they arise—so that, when you talk to your child’s doctors, you can be sure that all of your concerns are addressed.

    You may want to ask:

    • What is happening to my child, and why?
    • Will further tests be needed to confirm my child’s diagnosis?
    • Are there any other heart defects besides the COA?
    • What treatment options are there?
    • Are there alternative therapies?
    • What will his recovery be like?
    • Will there be restrictions on my child’s activities? If so, for how long?
    • What can we do at home?
    • Will there be long-term effects?

    Q: When is COA usually diagnosed, and how?
    A:
    On physical exam, the main sign of a coarctation is usually that the femoral (thigh) or foot pulses are weak and therefore difficult for the doctor to feel. (Part of the newborn discharge exam is to be able to feel four good pulses.)

    Tests to confirm a diagnosis may include:

    • echocardiogram (echo, cardiac ultrasound)
    • electrocardiogram (ECG or EKG)
    • magnetic resonance imaging (MRI)
    • chest x-ray (used only occasionally at Children’s to diagnose COA)

    Q: What benefit is there to a prenatal (fetal) ultrasound that detects COA while the baby is still in the womb?

    A: COA can be detected prenatally through cardiac ultrasound: The test can pick up the size discrepancy between the left heart and the right heart, as well as the narrowing of the aortic arch.

    The aortic arch isn’t usually obstructed in the fetus because of the open ductus arteriosus (the prenatal connection between the aorta and the pulmonary artery), so there’s no need to treat the fetus in utero. The obstruction can become evident once the ductus arteriosus closes after birth.

    Being able to diagnose COA through prenatal cardiac ultrasound does give doctors a head-start in determining next steps. We can plan in advance for your baby’s delivery, and for his immediate stabilization and care once he’s born. Upon the baby’s birth, our team will bring together the pediatric and obstetric specialists needed for his care.

    The coarctation due to migration of ductal tissue into the aorta cannot be diagnosed until after birth, when the ductus closes.

    Q: What should we do at home after COA surgery?
    A:
    Your child’s cardiologist will follow your child’s progress closely, and will offer recommendations for post-operative follow-up care—including:

    • wound care
    • a nutritional program to encourage weight gain
    • an appropriate exercise routine (which will help keep his blood pressure in check)
    • an oral hygiene program to prevent infection (if needed)

    Q: What is the long-term outlook for COA-affected children?
    A:
    If your child’s COA is repaired in infancy—before there’s any permanent damage such as high blood pressure—the long-term outlook is excellent.

    Your child may need repeat surgery or catheterization if the repaired area re-narrows (re-narrowing occurs in about 20 percent of infants in the first or second year after repair). But in general, most children who’ve had surgery for COA will live healthy lives—with activity levels, appetite and growth eventually returning to normal.

    Q: What causes COA?
    A:
    It’s important to understand that as parents, you’ve done nothing to cause COA and its associated defects. Nothing you’ve ingested or have been exposed to environmentally has been linked to having a child with COA. Familial cases have been reported, but a genetic link is still being researched.

    COA is the result of the abnormal development of the fetal heart during the first eight weeks of pregnancy. But it’s not understood why the heart doesn’t develop normally. Congenital heart defects usually occur sporadically (by chance), with no clear reason for their development.

    Q: What is Boston Children’s experience treating congenital heart defects?
    A:
    Boston Children’s surgeons treat some of the most complex pediatric heart conditions in the world, with top success rates. Our experts have pioneered some of medical science’s most advanced heart treatments, now in use around the globe. For example, Boston Children’s is the world’s largest and most experienced program for fetal heart intervention.

    Q: What heart research and innovations are coming from Boston Children’s?
    A:
    Boston Children’s is a world pioneer in the development and use of innovative fetal intervention to treat certain rare congenital heart defects. Thanks to Boston Children’s research and refinements of technique, our Advanced Fetal Care Center offers the world’s largest and most experienced program for fetal heart intervention.

    Boston Children's is a world leader in "translational research"—bringing laboratory advances to the bedside and doctor's office as soon as possible. All senior medical staff in the Department of Cardiology do clinical research, and many also do laboratory research.

    Causes

    It’s important to understand that as parents, you’ve done nothing to cause COA and any associated defects. Nothing you’ve ingested or have been exposed to environmentally has been linked to having a child with COA. Familial cases have been reported, but a definitive genetic link is still being researched.

    COA is the result of abnormal development of the fetal heart during the first eight weeks of pregnancy. But it’s not understood why some babies’ hearts don’t develop normally. Congenital heart defects usually occur sporadically (by chance), with no clear reason for their development.

    Signs and symptoms

    The more severe the narrowing, the more signs and symptoms a child will have, and the earlier the problem will be noticed. In infants, the onset of symptoms in a previously “fine” baby can be sudden and severe. On the other end of the spectrum, mild narrowing may not cause any symptoms at all.

    Common signs include:

    • heavy and/or rapid breathing
    • pale skin
    • sweating
    • cold feet and legs
    • irritability

    The most common physical finding for COA in an infant is that the baby’s thigh or foot pulses are weak—making them hard for the doctor to feel.

    COA may not be noted until school-age, adolescence or adulthood. As the child grows, his aorta will not grow at the same rate; so with the vessel’s relative narrowing later in life, signs and symptoms can appear.

    When to seek medical advice

    For infants. In infancy, COA is very serious and can be fatal if untreated. Call your health care provider immediately if your infant:

    • is having difficulty breathing or is breathing rapidly
    • is unusually pale
    • is feeding poorly
    • is lethargic
    • has cold feet and legs

    For children or teens. Call your provider if your older child or teen is experiencing unexplained high blood pressure, a heart murmur, nosebleeds, headaches (from high blood pressure above the COA) or cramps in his lower body (from low blood pressure below the COA).

    Questions to ask your doctor

    After your child is diagnosed with COA, you may feel overwhelmed with information. To avoid losing track of the questions that occur to you, you may want to jot you’re your questions as you think of them. Then, when you talk to your child’s doctors, you can be sure all your concerns get addressed.

    Some of the questions you may want to ask are:

    • What is happening to my child, and why?
    • Will further tests be needed to confirm my child’s diagnosis?
    • Are there any other heart defects besides the COA?
    • What treatment options are there?
    • Are there alternative therapies?
    • What will his recovery be like?
    • Will there be restrictions on my child’s activities? If so, for how long?
    • What can we do at home?
    • Will there be long-term effects?

    Who’s at risk

    Certain syndromes, such as Turner syndrome (a chromosomal abnormality in girls), can be associated with COA and bicuspid aortic valve.

    But most congenital heart defects occur sporadically (by chance), with no clear reason for their development. So, it’s difficult to predict who’s at risk. Familial cases have been reported, but a definitive genetic link is still being sought by researchers.

    Complications and risks

    Aside from the usual complications from any surgery, such as bleeding or infection, complications from COA surgery are very rare.

    • The greatest risk—but still very rare—is damage to nerves in the region of the aortic arch. (In extremely rare instances, this could result in larynx/vocal cord damage.)
    • Another complication (rarely seen today) is bacterial endocarditis(inflammation of the heart lining) after the child’s discharge from the hospital. The risk is somewhat higher if:
    • artificial patch material (instead of the child’s own native tissue) is used to repair the coarctation
    • the patient has particularly poor dental hygiene
    • the patient has another systemic infection

    If endocarditis is a risk, your child's cardiologist may recommend preventive antibiotics.

    • Risks of aneurysm: There are two types of aneurysm that can present a risk:
    • A brain aneurysm—a burst blood vessel—can be associated with vascular disease and high blood pressure.
    • An aneurysm at the site of the coarctation repair, particularly if the patient has had a balloon dilation, can weaken the blood vessel wall. If a patient has had a dilation, the doctor will follow him over time with CT scans or MRIs to make sure an aneurysm doesn’t develop. If an aneurysm does develop, it must be repaired.
    • Complications from not treating COA: Failure to treat mild to moderate COA can lead to high blood pressure, which puts a child’s vascular system at risk and can pose long-term risks of:
    • stroke
    • heart attack
    • ventricular hypertrophy (thickening)
    • impaired cardiac function
    • rupture of the aorta
    • brain (cerebral) aneurysm (see bullet above)
    • organ failure (e.g., kidney, liver) resulting from blood pressure that’s too low

    Long-term outlook

    If your child’s COA is repaired in infancy—before there’s any permanent damage such as chronic high blood pressure—his long-term outlook is excellent. Your child may need repeat surgery or catheterization if the repaired area re-narrows (re-narrowing occurs in about 20 percent of infants in the first or second year after repair). But most kids who’ve had surgery for COA will live healthy lives—with activity levels, appetite and growth eventually returning to normal.

    Your cardiologist will help create a long-term care plan as your baby grows into childhood and his teen years. Most people who have had congenital heart disease repair have an ongoing relationship with their cardiologist. We’ll consult with you; treat your child if complications arise; and advise on daily-life issues such as exercise, activity levels, nutrition and, for females, pregnancy precautions.

    For teens

    As a teen with a congenital heart defect, you have a lot to deal with. Besides the typical issues any teenager faces—from social acceptance to body changes and more—you also have to cope with:

    • medical appointments and procedures
    • feeling different
    • assuming some personal responsibility for your health

    The good news is that your COA repair is very likely to be successful, and your cardiologist visits will probably be mostly for monitoring. Even so, if you (or your parents) feel down or anxious through this time, speak to your doctor, nurse, parent or counselor—they’re all on your team, and they all want to help.

    What you can do at home

    Your child’s cardiologist will follow his progress closely, and will offer recommendations for follow-up care after treatment—including:

    • wound care
    • a nutritional program to encourage weight gain
    • an appropriate exercise routine (this will help keep his blood pressure in check)
    • an oral hygiene program to prevent infection (if needed)

    Consult your child’s cardiologist for guidance on specific steps for follow-up care at home. And as your baby recovers and grows, be sure to follow a regular program of well-baby/well-child checkups.

    Prevention

    As parents, you need to know that you’ve done nothing to cause your child’s COA and any accompanying defects; there are no precautions you could have taken to prevent it. A congenital heart defect usually occurs sporadically (by chance), with no clear reason for its development.

    While COA can’t be prevented, early detection can help. Discuss with your child’s doctor the risk of COA or another heart defect if:

    • your daughter has Turner’s syndrome
    • your family has a history of congenital heart disease
    • your child already has another heart defect

    COA Glossary

    • aorta: one of the heart’s two great arteries. In a normal heart, the aorta arises from the left ventricle and pumps oxygen-rich blood out to the body. In COA, the aorta is narrowed and/or obstructed, usually just beyond the arch, preventing proper red blood flow out to the body.
    • bicuspid aortic valve: a defect of the aortic valve in which the valve has two flaps (leaflets) instead of the usual three. The aortic valve opens when the left ventricle pumps blood into the aorta, then closes after the blood is ejected to prevent the ejected blood from going back into the heart.
    • cardiac/cardio-: pertaining to the heart
    • cardiac catheterization: provides detailed visual information and measurements about the structures inside the heart, cardiac catheterization is a procedure that can be performed on a fetus, a baby, a child or an adult. Catheterization can be diagnostic-only, diagnostic and therapeutic, or diagnostic and interventional.
    • cardiac intervention: a minimally invasive procedure, such as cardiac catheterization or angioplasty, to diagnose and/or treat heart disease
    • cardiac surgery: surgical procedure performed on the heart
    • cardiac surgeon: doctor who performs surgery on the heart. A pediatric cardiac surgeon performs surgery on the hearts of infants and children.
    • cardiologist: doctor who diagnoses and treats heart problems non-surgically. A pediatric cardiologist treats infants and children with heart problems.
    • cardiovascular MRI (magnetic resonance imaging): a diagnostic procedure that uses a combination of large magnets, radiofrequencies and a computer to produce detailed images of organs and structures within the body.
    • The Center for Families at Children’s: dedicated to helping families find the information, services and resources they need to understand their child’s medical condition and take part in their care
    • coarctation of the aorta (COA): a narrowing of the aorta, the main artery that delivers oxygen-rich (red) blood to the body. Although this narrowing can occur anywhere in the aorta, it’s usually found in the segment just beyond the aortic arch
    • congenital heart defect: heart defect present at birth. The heart usually forms in the first eight weeks of fetal development. It is thought that most congenital heart defects develop during this period.
    • diagnosis: medical determination of illness or disease based on physical examinations and advanced technology diagnostic testing tools
    • ductus arteriosus: the prenatal connection that ensures blood flow between the aorta and the pulmonary artery, which usually closes shortly after birth
    • echocardiogram (echo, cardiac ultrasound): a diagnostic tool that evaluates the structure and function of the heart using electronically recorded sound waves that produce a moving picture of your child’s heart and heart valves.
    • electrocardiogram (ECG, EKG): a diagnostic tool that evaluates the electrical activity of your child’s heart.
    • (bacterial) endocarditis(inflammation of the heart lining)
    • fetal echocardiogram (fetal ultrasound): a diagnostic tool that uses sound waves to evaluate the structure and function of the baby’s heart while still in utero. The ultrasound can detect a COA defect in the fetus.
    • fetal magnetic imaging (MRI): a non-invasive diagnostic tool that uses 3-D imaging technology produced by magnets to accurately determine the blood flow and functioning of your child’s heart in utero. Drawing on our expertise in pediatric imaging, Children’s is setting a new standard in fetal MRI.
    • interventional cardiologist: doctor who specializes in performing minimally invasive procedures, such as cardiac catheterization or angioplasty, to diagnose and treat heart disease
    • native tissue: the body’s own tissue (as opposed to artificial tissue)
    • symptoms: the presenting reasons why a child needs medical attention; something a patient feels, rather than something discovered by exam or testing. A symptom’s characteristics—including but not limited to onset, quality, triggers and severity—help diagnosticians to determine an illness or disease, or to determine what further testing is needed to determine the illness or disease.
    • patent (open) ductus arteriosus (PDA): a blood vessel (the ductus arteriosus) that connects the two great arteries (the aorta and the pulmonary artery) and usually closes soon after birth. As long as the PDA remains open (patent), blood can pass from the right ventricle and pulmonary artery to the aorta and body, allowing some oxygen-rich blood to circulate.
    • perfusion: the passage of blood through the blood vessels of the circulatory system
    • secondary defect: a defect that accompanies (“is secondary to”) a main defect
    • stent: a rigid metal tube inserted during a catheterization procedure to widen or keep open  a blood vessel
    • sporadic: occurring by chance, occasionally, not inherited
    • VSD: ventricular septal defect; an opening in the wall (septum) between the left and right ventricles of the heart; often a secondary defect to a COA
    • x-ray: a diagnostic test that uses invisible electromagnetic energy beams to produce images of internal tissues, bones and organs onto film.
  • At Boston Children's Hospital, we know that the first step to restoring your child’s health is to form an accurate and timely diagnosis.

    Diagnosing the infant

    Your child's doctor may have heard a heart murmur (a noise caused by the turbulence of blood flowing through a narrow region) during a physical exam and referred your child to a pediatric cardiologist* for a diagnosis. The murmur can—but doesn’t usually—result from the coarctation itself; more often, the murmur is the result of secondary defects, such as a bicuspid aortic valve or a VSD.

    *A pediatric cardiologist specializes in the diagnosis and medical management of congenital heart defects—as well as any heart problems that may develop later in childhood.

    The first line of diagnosis for COA is the clinical exam, beginning with obtaining the child’s vital signs. The pediatric cardiologist obtains a four-limb blood pressure—measuring the blood pressure in both arms and both legs.

    The doctor may suspect a coarctation if the blood pressure in the child’s legs is lower than the pressure in his arms. The baby’s femoral (thigh) or foot pulses will be weak and therefore very difficult for the doctor to feel. (Part of the newborn discharge exam is to be able to feel four good pulses.)

    Other tests that help with the diagnosis—or with treatment planning—may include:

    • echocardiogram (echo, cardiac ultrasound): evaluates the structure and function of the heart by using sound waves, recorded on an electronic sensor, that produce a moving picture of the heart and heart valves. At Boston Children’s, the echocardiogram is the primary diagnostic tool to confirm a diagnosis of COA, especially in young children.
    • electrocardiogram (ECG or EKG): records the electrical activity of the heart, shows abnormal rhythms (arrhythmias or dysrhythmias) and detects heart muscle damage.
    • cardiovascular MRI (magnetic resonance imaging): a diagnostic procedure that uses a combination of large magnets, radiofrequencies and a computer to produce detailed images of organs and structures within the body.
    • chest x-ray: a diagnostic test that uses invisible electromagnetic energy beams to produce images of internal tissues, bones and organs onto film. At Boston Children’s, x-ray is used to diagnose COA only occasionally.

    A word about prenatal diagnosis

    COA can sometimes be detected prenatally through cardiac ultrasound: The test can pick up the size discrepancy between the left heart and the right heart, as well as the narrowing of the aortic arch. The aortic arch may not be obstructed in the fetus because of the ductus arteriosus, which is open (patent) in the fetus. But the obstruction can show up in the newborn after his ductus arteriosus closes.

    So, while knowing in advance that the newborn will have COA can help doctors and families to be prepared for treatment after birth, there’s really no need to treat the fetus in utero.

    Diagnosing the older child, teen or adult

    Mild or moderate cases of COA may not be diagnosed until school-age, adolescence or even adulthood—whenever symptoms appear (sometimes it’s detected because of elevation on routine blood pressure measurement). As a child with COA grows, his aorta will not grow at the same rate; so with a relative narrowing later in life, signs and symptoms can appear, such as:

    • high blood pressure
    • nosebleeds
    • a heart murmur
    • headaches (from high blood pressure above the COA)
    • cramps in the lower sections of the body (from low blood pressure below the COA)

    With the onset of symptoms, cardiologists will diagnose COA through physical examination and the use of advanced diagnostic tools.

    Keeping family and friends up-to-date …  

    during your child’s treatment—by creating a free Boston Children’s Carepage

    Boston Children’s Heart Care Center

    The Heart Center at Boston Children’s is the largest pediatric heart program in the United States. Our staff of more than 80 pediatric cardiac specialists cares for thousands of children and adults with congenital and acquired heart defects each year. We have experience treating rare heart problems—with results that are among the best in the world.

    You’ll be comforted to know …

    … Boston Children’s Hospital pioneered interventional catheterization for many congenital heart defects.

  • Having identified your child's heart condition, the specialists at Boston Children's Hospital can begin caring for him.

    We treat coarctation of the aorta by repairing the narrowed vessel. Infants who are very sick and require care in our cardiac intensive care unit (CICU) may need emergency repair of the coarctation. Others who show few symptoms may have the repair scheduled on a less urgent basis.

    Pre-surgery for severe cases If your child's obstruction is severe, he'll most likely be admitted to the CICU, and he may receive IV (intravenous) medications before surgery to stabilize him and keep his ductus arteriosus from closing.

    Surgery

    For most infants, surgery is the standard treatment. The surgeon cuts out the narrowed segment and sews the two healthy ends of the aorta back together, reconstructing the arch and establishing normal blood flow through the vessel.

    If your child also has a large VSD, the surgeon will repair the defect at the time of the coarctation surgery. If there's a bicuspid aortic valve, it will need to be followed by the cardiologist to make sure that no obstruction (stenosis) or backwards flow (regurgitation) develops later.

    Surgery preferable for infants

    The fibrous band of tissue that creates the coarctation is not usually amenable to balloon dilation; it has to be cut out surgically. Surgery also gives the surgeon a chance to neatly reconstruct the aortic arch.

    But that repaired area can also become narrowed, fibrous tissue; so, as a second procedure, a catheterization/balloon dilation can be effective. In older children, teens or adults who are diagnosed for the first time, cardiologists might also insert a stent, since these patients are close enough to fully grown that they won't outgrow the stent.

    Cardiac catheterization (usually as a second procedure for older children)

    During the procedure, your child is sedated and a small, thin, flexible tube (catheter) is inserted into a blood vessel in the groin and guided to the inside of the heart. Once the catheter is in the heart, the cardiologist will pass an inflated balloon through the narrowed section of the aorta to stretch the area open. A small, rigid metal tube, called a stent, may also be placed in the narrowed area after the balloon dilation to keep the aorta open.

    Complications and risks

    Except for treatable complications that can from any surgery (such as bleeding or infection), complications from COA surgery are rare.

    • The greatest risk—but still very rare—is damage to nerves in the region of the aortic arch. (In extremely rare instances, this could result in larynx/vocal cord damage.)
    • Another complication (rarely seen today) is bacterial endocarditis(inflammation of the heart lining) after the child's discharge from the hospital. The risk is somewhat higher if:
    • artificial patch material (instead of the child's own native tissue) is used to repair the coarctation
    • the patient has particularly poor dental hygiene
    • the patient has another systemic infection

    If endocarditis is a risk, your child's cardiologist may recommend preventive antibiotics.

    • Risks of aneurysm: There are two types of aneurysm that can present a risk:
    • A brain aneurysm—a burst blood vessel—can be associated with vascular disease and high blood pressure.
    • An aneurysm at the site of the coarctation repair, particularly if the patient has had a balloon dilation, can weaken the blood vessel wall. If a patient has had a dilation, the doctor will follow him over time with echo, CT scans or MRIs to make sure an aneurysm doesn't develop. If an aneurysm does develop, it must be repaired.
    • Complications from not treating COA: Failure to treat mild to moderate COA can lead to high blood pressure, which puts a child's vascular system at risk and can pose long-term risks of:
    • stroke
    • heart attack
    • ventricular hypertrophy (thickening)
    • impaired cardiac function
    • rupture of the aorta
    • brain (cerebral) aneurysm (see bullet above)
    • organ failure (e.g., kidney, liver) resulting from blood pressure that's too low

    At home: caring for your child after COA repair

    • Your child's symptoms will disappear immediately after COA repair.
    • He'll feel better soon, especially if his treatment was catheterization.
    • He should avoid heavy lifting or rigorous sports for a few months while his body heals.
    • He may need medication on an ongoing basis.

    Your child's cardiologist will follow his progress closely, and will offer recommendations for post-operative follow-up care—including wound care, a nutritional program to encourage weight gain, an appropriate exercise routine (which will help keep his blood pressure in check) and an oral hygiene program to prevent infection (if needed).

    As he grows: your child's longer-term outlook

    If your child's COA is repaired in infancy—before there's any permanent damage such as chronic high blood pressure*—the long-term outlook is excellent. Your child may need repeat surgery or catheterization if the repaired area re-narrows (re-narrowing occurs in about 20 percent of infants in the first or second year after repair). But in general, most children who've had surgery for COA will live healthy lives, with activity levels, appetite and growth eventually returning to normal.

    * After surgery, your child's blood pressure may elevate temporarily, as his kidneys normalize. If this occurs, your doctor may prescribe medication to lower and stabilize your child's blood pressure.

    In rare instances, your child's cardiologist may recommend antibiotics to prevent your child from developing an inflammation of the heart lining (bacterial endocarditis) after his discharge from the hospital.

    As your baby recovers and grows, be sure to follow a regular program of well-baby/well-child checkups. Your cardiologist will help you to create a longer-term care program as your baby matures into childhood and his teen years. We'll treat any complications that develop, and we'll advise later on daily-life issues such as exercise, activity levels, nutrition and (for females) pregnancy precautions.

    Overall, most children lead a normal life after treatment. But your child will need periodic follow-up to watch for re-narrowing and to monitor his blood pressure. If your child has also had a bicuspid aortic valve, this condition can cause problems later in life; precautions against infection of heart tissue (endocarditis) will probably be needed. 

    Outlook for patients diagnosed in childhood or adulthood

    Patients diagnosed later in childhood or in adulthood who've already developed chronic high blood pressure need to be followed, and some will need to be treated for their high blood pressure. Once surgery repairs the COA, any thickening in the heart muscle (hypertrophy) that has formed because of continued obstruction will usually become normal over time.

    Coping and support

    At Boston Children's, we understand that a hospital visit can be very stressful. So, we offer many amenities to make your child's and family's hospital experience as pleasant as possible. Visit The Center for Families to learn all about:

    • getting to Boston Children's
    • accommodations
    • navigating the hospital experience
    • resources that are available for your family

    We can connect you with lots of resources to help you and your family through this difficult time, including:

    • patient education: From the office visit to pre-op to the recovery room, our nurses will be on hand to walk you through your child's treatment and help answer any questions you may have—How long will I be separated from my child during surgery? What will the operating room be like? They will also reach out to you by phone, continuing the care and support you received while at Boston Children's.
    • parent-to-parent: Want to talk with someone whose child has been treated for a coarctation of the aorta? We can often put you in touch with other families who've been through the same procedure that you and your child are facing, and who will share their experiences.
    • faith-based support: If you're in need of spiritual support, we'll connect you with the Boston Children's chaplaincy. Clergy from Protestant, Jewish, Muslim, Roman Catholic and other faith traditions will listen to you and pray with you.
    • social work: Our social workers and mental health clinicians have helped many families like yours. We offer counseling and assistance with the stresses relating to your child's illness and dealing with financial difficulties.

    As your child reaches adulthood, our Boston Adult Congenital Heart (BACH) and Pulmonary Hypertension Service can help. Boston Children's is a founding institution of BACH—an international center that provides long-term inpatient and outpatient care and advanced therapeutic options for congenital heart disease patients as they reach and progress through adulthood.

    Boston Children's Cardiac ECMO Program … 

    provides a lifeline for critically ill heart and lung patients 

    Boston Children's Cardiac Surgery Program 

    Boston Children's is home to America's largest pediatric cardiac surgery program. Every year, our surgeons perform more than 1,200 operations with overall success rates approaching 98%. 

  • Boston Children's Hospital is known for successfully pioneering many cardiac treatments. A large part of our success comes from our commitment to research—and to advancing the frontiers of what’s possible in cardiac medicine through the world’s largest pediatric research program.

    Shaping new advances in fetal and newborn care, our researchers work just steps away from our physicians and patients—giving doctors a vital jump-start on applying lifesaving research discoveries to real-life patient care.

    Coarctation stenting clinical trial

    Under the leadership of principal investigator and Boston Children’s cardiologist  Doff McElhinney, MD, this research has studied—and will continue to study—the use, safety and effectiveness of the new Cheatham Platinum bare-metal stent for the treatment of coarctation of the aorta.

    Placement of a stent (a metal tube inserted into a blood vessel) can be done through catheterization, and can be as effective as surgery. This study involves catheterization performed just as it would be with an older type of stent. Special x-rays and an MRI will be used to assess the new stent for up to two years following the catheterization.

    Cardiac research

    Boston Children's has pioneered interventional catheterization repair of many types of congenital heart defects, including coarctation of the aorta. We’re also a world pioneer in the development and use of innovative fetal cardiac intervention to treat hypoplastic left heart syndrome (HLHS). Thanks to Boston Children’s research and refinements of technique, our Advanced Fetal Care Center offers the world’s largest and most experienced fetal intervention program.

    Boston Children's is committed to opening new avenues of "translational research"—bringing laboratory advances to the bedside and doctor's office as soon as possible. All senior medical staff members of the Department of Cardiology participate in clinical research activities, and many do laboratory research, as well.

    Current heart research projects include:

    • the further development of innovative catheterization treatments for the treatment of complex cardiac diseases
    • the design and evaluation of new therapeutic catheters and techniques
    • the use of transcatheter radio-frequency ablation to treat both simple and complex arrhythmias
    • a multi-disciplinary clinical trial studying brain function following the effects of body cooling and blood thinning (hemodilution) during open heart surgery
    • a study of pH management strategy in infant heart surgery
    • population-based studies of clinical outcomes and resource utilization for congenital heart defects
    • control of the body's inflammatory response to cardiopulmonary bypass and surgery
    • the use of inhaled nitric oxide to reduce pulmonary hypertension
    • a study of the effects of the drug Adriamycin on heart function in survivors of childhood cancer
    • a cross-sectional study on long-term outcome after the Fontan procedure
    • improved approaches to protecting the heart and brain in infants and children during surgical procedures
    • the design and creation of heart valves using a patient's own tissue
    • the design and evaluation of three-dimensional electrophysiological mapping techniques
    • evaluation of the biophysics of radio-frequency ablation to treat arrhythmia
    • a six-center study of HIV's effect on the hearts of infants and children

    Cardiac surgery research

    Members of the Boston Children’s Cardiac Surgery Research Laboratory—a multidisciplinary team of basic and applied research investigators who hold faculty appointments at Harvard Medical School—are studying the mechanisms of heart disease and new treatments for children with congenital heart defects.

    Learn more about current projects in heart surgery research.

    Boston Children’s Congenital Heart Valve Program

    Our Congenital Heart Valve Program cares for children with congenital heart defects involving absent or malfunctioning heart valves—often an accompanying defect with coarctation of the aorta. Our surgeons have a strong record of excellence in heart valve repair and replacement, including minimally invasive techniques.

    Innovative valve care

    In the past, children with heart valve conditions have had chronic problems that require lifelong follow-up and treatment. Currently, few artificial replacement heart valves are available that are designed specifically for children, so doctors are limited in their options. Further complicating matters, when surgeons place a new valve in a child, it doesn't expand as the child grows, so it needs to be replaced over time.

    To address these problems, Boston Children's cardiac surgery researchers are exploring ways to reconstruct children's existing valves. Unlike replacement valves, a reconstructed valve can last a long time and give children an optimal quality of life. Learn and see more, including views of advanced imaging of heart valves. 

  • Kendal’s Story

    We found out the news at 30 weeks. "I'm sorry, your baby has one kidney and a hole in her heart," the radiologist said. I wanted to curl up in a ball and die.

    "How can this be happening to us again?" I said to my husband, as tears poured down my face. This was our third child. Our 7-year-old son sustained a brain-related birth injury from the vacuum extractor; he now suffers from cerebral palsy and epilepsy. Our 2-year-old daughter was born via emergency cesarean section. I was desperate to achieve one natural, peaceful birth experience.

    You see I am a birthing Doula. I help women achieve a gentle and calm birth experience. Very rarely have I ended up in the operating room with a client. But I knew what this news meant for me: the OR was imminent. A repeat cesarean section was needed.

    Evaluation at Boston Children's 

    We were sent to Boston Children's Hospital for a fetal echocardiogram. Cardiologist Gerald Marx, MD, explained to us that he had found more problems. The baby had a possible coarctation of the aorta, and there were two ventricular septal defects (VSDs) in her heart. We were told there might be an underlining genetic disorder, like Downs or Turners syndrome. I opted not to do the amniocentesis at 30 weeks. It didn't matter to me; I would love my child just as much.

    Kendal Grace is born

    Kendal Grace was born via cesarean section on Oct. 10, 2003, at neighboring Brigham and Women's Hospital. She weighed 4lbs., 10oz., and was 16.5 inches long. They took her to Boston Children's Hospital's Cardiac Intensive Care Unit. Dr Marx came in and told us her heart condition was worse than what they thought. She actually had five VSDs, a severe coarctation, a large patent ductus arteriosus (PDA), a condition where the normal channel between the pulmonary artery and the aorta fails to close at birth, a bicuspid aortic valve and a horseshoe kidney that was functioning.

    Open-heart surgery was scheduled for four days later. Kendal continued to go downhill, suffering from congestive heart failure. I couldn't leave her. Because there is an indoor tunnel connecting Boston Children's and Brigham and Women's, my husband wheeled me over to Boston Children's to see her constantly. There was a good chance she would not survive, and I needed to be with her. Even though I couldn't hold her, I could look at her. I remember staring at her thinking, "If she doesn't make it, will I remember what she looks like?"

    Compassionate team Kendall

    We met cardiac surgeon Frank Pigula, MD, that afternoon. He was very honest with us, explaining all the risks of the surgery. He is one of the most compassionate doctors I have ever met, and he treated Kendal with the respect she deserved.

    An hour before surgery, I lost it. Father Robert Nee of Boston Children's pastoral staff saw me breaking down. He pulled me into a room alone. I kept telling him I didn't understand any of this! He told me that none of this was in my control. "God will guide her to where she needs to be. Either way, she will be in the right place," he said. He told me I could love Kendal even if she was not in my arms, and that I could love her during her surgery by imagining my love as a blanket wrapping her up tight. He told me she could feel my love even though it is not physical

    Going into surgery 

    I kissed Kendal goodbye and they took her into surgery. I will never forget the compassion the surgical team gave us. They were wonderful. I handed her to the nurse and we all cried. She was awake when she left us, her big brown eyes peeping over the blanket. She looked scared. The doors closed and I didn't know if I would see her alive again.

    Kendal's surgery was a success. They repaired three of the five holes. They surgically closed her PDA and they fixed her aorta. She recovered well.

    Kendal now 

    Kendal is home now growing beautifully. We are blessed to have her in our life. All her genetic testing came back normal. We are thankful. As a mother of two special needs children now, I truly believe God will only give you what you can handle. Don't ask why, because you will never get the answer.

    As a Doula, I have learned that no matter how your birth experience turns out, it is still the birth of your baby. It is special in every aspect; embrace the moment no matter what the situation. Thank you to everyone at both hospitals, for the wonderful care and for guiding us through a journey no parent should have to experience. You gave us strength and helped us to see Kendal's strength, even as she lay there with all those tubes. Thank you for all the prayers from family and friends. God bless Dr. Pigula and his team at Boston Children's Hospital. You are all forever in our thoughts and prayers. God bless the parents and children we left behind in the CICU. We think of you often.

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