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There are many ways you can help children and their families get the care they need.
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.
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.
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.
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.
Except for treatable complications that can from any surgery (such as bleeding or infection), complications from COA surgery are rare.
If endocarditis is a risk, your child's cardiologist may recommend preventive antibiotics.
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).
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.
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.
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:
We can connect you with lots of resources to help you and your family through this difficult time, including:
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.
Provides a lifeline for critically ill heart and lung patients. Click here to learn more.
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%.
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We are grateful to have been ranked #1 on U.S. News & World Report's list of the best children's hospitals in the nation for the third year in a row, an honor we could not have achieved without the patients and families who inspire us to do our very best for them. Thanks to you, Boston Children's is a place where we can write the greatest children's stories ever told.”