Materiały źródłowe

• #1 Ebstein’s Anomaly – Zero To Finals

  https://zerotofinals.com/paediatrics/cardiology/ebsteins/

  Ebstein’s anomaly is a congenital heart condition where the tricuspid valve is set lower in the right side of the heart (towards the apex), causing a bigger right atrium and a smaller right ventricle. The tricuspid valve does not function normally, resulting in tricuspid regurgitation (blood flowing back from the right ventricle to the right atrium). There is reduced right ventricular function. […] Medical management involves treating arrhythmias and heart failure. […] Surgical management may involve tricuspid valve repair or replacement.

• #1 Ebstein’s Anomaly: A Rare Disease Treated with World-class Care Here at Home | Newsroom

  https://news.unchealthcare.org/2021/10/ebsteins-anomaly-a-rare-disease-treated-with-world-class-care-here-at-home/

  Jahliah suffers from Ebsteins Anomaly, a rare disease treated with world-class care at UNC Health. […] Weve been monitoring her carefully throughout the day, every day, says mom, Takeisha Harrison. Even her teachers at school would watch her for signs, making sure she didnt do anything too strenuous that would make her heart race and pass out. […] Takeisha was scheduled for a C-Section in Chapel Hill, so once Jahliah was born doctors could perform surgery to fix her condition. […] After being released from the hospital, Takeisha and Jahliah settled back into Wilmington. Her doctors monitored her condition. […] The vast majority of patients are in the middle, and theyll come to develop symptoms like shortness of breath, palpitations, feeling less active, or getting short of breath with exertion at some point in their lifetime.

• #1 Ebstein’s Anomaly | Obstetrics & Gynecology

  https://www.obgyn.columbia.edu/patient-care/our-centers/center-prenatal-pediatrics/conditions-we-care/ebsteins-anomaly

  Ebsteins anomaly is an abnormality in the tricuspid valve (the heart valve that connects the right atrium with the right ventricle). This abnormality may cause the valve to leak, resulting in enlargement of the right atrium. […] When an Ebsteins anomaly is suspected, further evaluation includes a specialized evaluation of the fetal heart (fetal echocardiogram). […] Prenatal consultations with pediatric cardiology, pediatric cardiothoracic surgery, and neonatology specialists are recommended to discuss the prognosis and management after birth. […] Newborns will be evaluated and cared for by a team involving pediatric cardiology and neonatology specialists. Outcomes vary widely based upon severity of the condition.

• #1 Ebstein’s Anomaly | Texas Children’s

  https://www.texaschildrens.org/content/conditions/ebsteins-anomaly

  Ebstein’s anomaly is a congenital heart defect in which the tricuspid valve, located between the upper and lower chambers on the right side of the heart (right atrium and right ventricle), forms abnormally, causing it to not close properly. […] If Ebstein’s anomaly is suspected or diagnosed during pregnancy, prompt referral to a fetal cardiac center is important for further evaluation and to ensure proper delivery and treatment planning. […] During pregnancy, mother and baby will be closely monitored for early detection of complications, including fetal non-immune hydrops (fluid accumulation in multiple areas of the baby’s body) and fetal heart failure, which in some cases may require an early delivery. […] For the best possible outcomes, delivery should take place at a center with the highest quality congenital heart program, ensuring the expertise and resources required to treat Ebstein’s anomaly at birth, including an advanced neonatal intensive care unit (NICU), if needed.

• #1 Management of Ebstein’s anomaly – Kron- Annals of Cardiothoracic Surgery

  https://www.annalscts.com/article/view/14957/15204

  Prenatal diagnosis of the Ebstein malformation has allowed for improvements in immediate postnatal management. Open communication amongst the pediatric intensivist, cardiologist and maternal fetal medicine physician can help risk stratify the patient and decide what monitoring/level of care will be needed postnatally. If there is any concern for a neonatal intervention, we prefer to have these patients placed in the cardiac pediatric ICU, as they can have severe cyanosis and acidosis due to lung hypoplasia secondary to severe right atrial enlargement in utero and right to left shunting at the foramen ovale. Prenatal awareness and preparation will help to avoid management errors. […] Stable patients are initially treated with supplemental oxygen, observation for adequate cardiac output, and possible PGE infusion to ensure pulmonary blood flow. In an unstable patient, intubation and sedation, along with inotropic support and PGE can help improve cardiac output, decrease metabolic demand and ensure pulmonary blood flow. Other therapies to decrease pulmonary vascular resistance and promote blood flow through the RV, such as oxygen, nitric oxide and avoiding acidosis can be helpful.

• #1 Ebstein’s Anomaly | Texas Children’s

  https://www.texaschildrens.org/content/conditions/ebsteins-anomaly

  Delivery and postnatal care should be carefully planned and coordinated. […] The type and timing of treatment after birth depends on the severity of the tricuspid valve problem and the baby’s symptoms. […] In general, treatment strategies for Ebstein’s anomaly include: Regular monitoring for signs the heart is enlarging or weakening, Oxygen/breathing support, Medications, Surgery to repair or replace the tricuspid valve; in rare cases a series of surgical procedures may also be needed if the right ventricle is too small to support the baby’s needs. […] Babies born with Ebstein’s anomaly require lifelong care by a cardiologist.

• #1 Management of Ebstein Anomaly in the Current Era: The Story of One Fetus and the Collaboration of Many—A Case Report

  https://www.mdpi.com/2308-3425/11/5/147

  The focus of the management plan was the potential for postnatal instability in the setting of high pulmonary vascular resistance and anticipated limited pulmonary blood flow. Plans for expeditious surgical intervention included fenestrated tricuspid valve closure, atrial septectomy, and a Blalock–Taussig–Thomas (BTT) shunt within the first 24 h of life. […] Delivery planning includes decisions on timing, mode, and location of delivery, as well as planning for the availability of team members with the skill sets appropriate for the care of the neonate. […] The parents did not meet their child’s surgeon prenatally, as the infant was delivered the day before the planned consultation. However, prenatal discussions with the surgical team reviewing the fetal predictors of postnatal physiology allowed us to agree on the surgical plan for postnatal atrial septectomy, fenestrated closure of the tricuspid valve, and creation of a BTT shunt, as well as to be able to proceed with the expeditious institution of surgical palliation postnatally.

• #1 Ebstein Anomaly (for Parents) – Humana – Kentucky

  https://kidshealth.org/HumanaKentucky/en/parents/ebstein-anomaly.html

  Babies with Ebstein anomaly need care from a pediatric cardiologist (a doctor who diagnoses and treats children’s heart problems) because the heart’s pumping ability may fall short as the child grows. The doctor will recommend treatment that is tailored to a child’s needs. […] If the defect was found before birth, the delivery team will be ready to provide intensive care right away in case the newborn is not doing well. But most newborns with the anomaly don’t need immediate treatment. Doctors will monitor them closely to watch for changes and provide quick treatment if needed. […] When treatment is needed, the most common types used are: […] Medicines can help keep the heart from beating too fast and treat heart failure (when the heart can’t meet the body’s demands) if it develops. […] Some children with Ebstein anomaly don’t need treatment.

• #1 Management of Ebstein’s anomaly – Kron- Annals of Cardiothoracic Surgery

  https://www.annalscts.com/article/view/14957/15204

  If anatomic or functional pulmonary valve atresia exists or the patient is dependent on PGE infusion, surgery is required. Patients with a small RV and mild tricuspid regurgitation (TR) should have a modified Blalock-Taussig shunt (mBTS). […] If there is moderate to severe TR and the functional RV is small, then a fenestrated right ventricular exclusion (Starnes Procedure) should be performed. […] The goals of this procedure are to exclude and decompress the malformed RV, perform a reduction atrioplasty, ensure a wide open atrial septal defect (ASD), and provide pulmonary blood flow via an mBTS. […] The goals of this operation are the creation of a competent tricuspid valve, right atrioplasty, closure of the ASD with creation of a small fenestration, repair of all associated defects, and placement of a valved RV-PA conduit.

• #1 Ebstein Anomaly | Rady Children’s Hospital

  https://www.rchsd.org/health-article/ebstein-anomaly/

  Ebstein anomaly is a rare heart defect that affects the tricuspid valve (one of the hearts four valves). […] Babies with Ebstein anomaly need care from a pediatric cardiologist (a doctor who diagnoses and treats childrens heart problems) because the hearts pumping ability may fall short as the child grows. The doctor will recommend treatment that is tailored to a childs needs. […] When treatment is needed, the most common types used are: Oxygen, Surgery, Medicines, Electrophysiology Study.

• #1 Ebstein anomaly: Management and prognosis – UpToDate

  https://www.uptodate.com/contents/ebstein-anomaly-management-and-prognosis

  All patients with Ebstein anomaly should undergo periodic monitoring, preferably by a congenital cardiovascular specialist. […] Indications for intervention or surgical repair of children and adults with Ebstein anomaly include worsening heart failure, progressive cyanosis or uncontrolled arrhythmias. Surgical repair may also be considered if there is decline in functional capacity with evidence of right ventricular dysfunction and/or hypoxia. Occasionally, asymptomatic adult patients with severe tricuspid valve regurgitation and repairable tricuspid valves are considered for early repair to prevent progressive right heart enlargement.

• #1 Ebstein’s Anomaly of the Tricuspid Valve | Children’s Hospital of Philadelphia

  https://www.chop.edu/conditions-diseases/ebstein-s-anomaly-tricuspid-valve

  Symptoms of Ebstein’s anomaly include some or all of the following: […] Newborns with severe Ebstein’s anomaly who are cyanotic or who have difficulty breathing after birth must be admitted to a cardiac intensive care unit for evaluation. […] In many cases of Ebstein’s anomaly, treatment is not necessary during infancy or early childhood. However, life-long cardiology follow-up will be needed to keep an eye out for any complications that may develop. […] Our pediatric cardiologists follow patients with Ebstein’s anomaly until they are young adults, coordinating care with the primary care physician. Patients will need to carefully follow doctors’ advice, including staying on any medications prescribed and, in some cases, limiting exercise. […] Sometimes children with Ebstein’s anomaly of the tricuspid valve experience heart problems later in life, including irregular heartbeat and a leaky heart valve. Medicine, additional surgery or procedures, such as cardiac catheterization, may be required.

• #1 Ebstein Anomaly | Conditions | UCSF Health

  https://www.ucsfhealth.org/conditions/ebstein-anomaly

  UCSF provides comprehensive, highly specialized care for adults living with heart defects such as Ebstein anomaly. Our dedicated team of experts offers a wide array of services, including thorough medical evaluations, advanced treatments, long-term monitoring, and personalized recommendations on diet, exercise, psychosocial support and family planning. […] Adults with Ebstein anomaly should be followed regularly by a cardiologist with a special interest in adult congenital heart disease. Yearly echocardiograms are necessary in all but the mildest cases. […] People with Ebstein anomaly should be prescribed antibiotics before surgery or dental procedures to protect against endocarditis. […] If medication no longer controls symptoms or if the heart enlarges and loses efficiency, surgery may be required. The surgery may either repair the tricuspid valve or replace it with an artificial valve. It also may involve repairing any associated condition such as atrial septal defect. […] If arrhythmia is present, radiofrequency ablation, a procedure in which a burst of energy destroys an abnormal electrical pathway in the heart, may be necessary. Rarely, a permanent pacemaker will be implanted.

• #1 Ebstein anomaly – Diagnosis and treatment – Mayo Clinic

  https://www.mayoclinic.org/diseases-conditions/ebsteins-anomaly/diagnosis-treatment/drc-20352132

  Our caring team of Mayo Clinic experts can help you with your ebstein anomaly-related health concerns […] If Ebstein anomaly isn’t causing irregular heartbeats or other symptoms, regular health checkups may be all that’s needed. […] If you have Ebstein anomaly, you may get medicine to: Control irregular heartbeats or other changes in the heartbeat. […] Surgery is typically done if Ebstein anomaly causes severe tricuspid regurgitation and there is heart failure or increasing difficulty with exercise. […] It’s important to choose a surgeon who’s familiar with Ebstein anomaly. […] These tips can help you manage Ebstein anomaly symptoms and improve comfort. […] Choose a heart doctor trained in treating heart conditions present at birth. […] Taking the right dose at the right time may help ease symptoms such as racing heartbeats, fatigue and shortness of breath. […] Be as physically active as possible. […] Talking to a therapist or counselor may be helpful. […] Ask your healthcare team if there are any Ebstein anomaly support groups in your area.

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• #1 Ebstein anomaly

  https://adamcertificationdemo.adam.com/content.aspx?productid=142&pid=1&gid=007321

  Ebstein anomaly is a rare heart defect in which parts of the tricuspid valve are abnormal. The condition is congenital, which means it is present at birth. […] Treatment depends on the severity of the defect and the specific symptoms. Medical care may include: Medicines to help with heart failure, such as diuretics. Oxygen and other breathing support. Surgery to correct the valve. Replacement of the tricuspid valve. This may be needed for children who continue to worsen or who have more serious complications. […] Contact your provider if your child develops symptoms of this condition. Get medical attention right away if breathing problems occur.

• #1 Ebstein’s Anomaly | Boston Children’s Hospital

  https://www.childrenshospital.org/conditions/ebsteins-anomaly

  The Boston Children’s Hospital Benderson Family Heart Center 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. […] Boston Children’s is one the select heart centers in the U.S. that performs the advanced and innovative “cone procedure” for repairing the tricuspid valve in children with Ebstein’s anomaly. […] Many patients with Ebstein’s also have arrhythmias called pre-excitation and Wolff-Parkinson-White syndrome. Our specialized team of electrophysiologists diagnose and treat these arrhythmias. […] Treatments for Ebstein’s anomaly are continually being refined, and the long-term outlook is continually improving. Most children who’ve had surgery recover and grow normally.

• #1 Ebstein Anomaly treatment by the Irish Congenital Heart Centre

  https://congenitalheartcentre.ie/congenital-heart-conditions/ebstein-anomaly/

  Ebstein anomaly is a rare heart defect that’s present at birth (congenital). […] If you have no signs or symptoms associated with Ebstein anomaly, careful monitoring of your heart may be all that’s necessary. […] Treatment options include medications and surgery. […] If you have heart rhythm disturbances, medications may help control your heart rate and maintain normal heart rhythm. […] Your doctor may recommend surgery when your symptoms are affecting your quality of life. […] Several different types of procedures can be used to surgically treat Ebstein anomaly and associated defects, including tricuspid valve repair, tricuspid valve replacement, closure of the atrial septal defect, maze procedure, radiofrequency catheter ablation, and heart transplantation.

• #1 A Model of Success in Ebstein Anomaly | Children’s Hospital Los Angeles

  https://www.chla.org/blog/experts/research-and-breakthroughs/model-success-ebstein-anomaly

  The Heart Institute at Childrens Hospital Los Angeles cares for critically ill babies and children with the most complex congenital heart disorders. One example of those disorders is Ebstein anomaly, a defect that involves an abnormality in the tricuspid valve and can result in a malfunctioning right ventricle. […] Our cardiologists are expert at making the right diagnosis pre-operatively and managing these children after very complex surgeries. We have nurses and anesthesiologists who are dedicated only to pediatric heart surgery. […] It takes the entire team. We have a cardiothoracic intensive care unit thats extremely proficient at taking care of the sickest patients. […] The biggest value of a second surgeon is in the decision-making. The babies and children we operate on are so fragile that the wrong decision during an operation could sometimes be unrecoverable. Having two experienced surgeons working side by side helps ensure that the right decision is made the first time. […] But its not just about the operating room. Its a team effort across the entire Heart Institute. We are all working together to achieve the best outcomes for these children.

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• #1 Ebstein’s Anomaly | Boston Children’s Hospital

  https://www.childrenshospital.org/conditions/ebsteins-anomaly

  Even so, your child will need periodic monitoring — and possibly medication — since he or she could be at some risk for abnormal heart rhythms (arrhythmias) and heart failure. […] Your child’s cardiologist will help you create a long-term care program as your baby matures into childhood, the teen years, and adulthood, where they are followed by the Adult Congenital Heart Program. Most people who have had congenital heart disease repair have an ongoing relationship with their cardiologist.

• #1 Ebstein Anomaly: An Overview for Nursing – PubMed

  https://pubmed.ncbi.nlm.nih.gov/26395651/

  Ebstein anomaly is a rare congenital heart defect. Many nurses have probably never encountered this anomaly, with very few able to accurately depict the pathological anatomy of the condition. […] There are important considerations for nurses when caring for an individual with Ebstein anomaly. The aim of this article is to give an overview of the condition exploring the pathophysiology, how patients typically present, and how to effectively care for a patient with Ebstein anomaly regarding medical and surgical courses of treatment. It is important for nurses to have a resource to reference on Ebstein anomaly, and the majority of current literature is solely based for medical providers. […] Furthermore, Ebstein patients may be seen on a variety of units in the hospital beyond cardiology (i.e., pregnant patient with a diagnosis of Ebstein anomaly).

• #1 Ebstein anomaly – Care at Mayo Clinic – Mayo Clinic

  https://www.mayoclinic.org/diseases-conditions/ebsteins-anomaly/care-at-mayo-clinic/mac-20352135

  Mayo Clinic doctors trained in treating children with heart conditions (pediatric cardiologists), doctors trained in heart disease (cardiologists) and doctors trained in heart surgery (cardiovascular surgeons) have extensive experience treating people with Ebstein anomaly and other congenital heart diseases. […] Staff in the Adult Congenital Heart Disease Clinic at Mayo Clinic provides care for adults with Ebstein anomaly and other congenital heart diseases. […] Mayo Clinic doctors trained in treating congenital heart disease work as a team to provide coordinated, comprehensive care for people with Ebstein anomaly. This collaborative approach means that your care team can often evaluate you and develop a treatment plan within 2 to 3 days. […] A team of cardiovascular surgeons, anesthesiologists and nurses has experience in the surgical and postoperative care of people with Ebstein anomaly.

• #1 Cone Procedure for Ebstein’s Anomaly | Phoenix Children’s Hospital

  https://phoenixchildrens.org/specialties-conditions/heart-surgery/programs-services/cone-procedure-ebsteins-anomaly

  It is important to note patients with Ebsteins Anomaly will require lifelong monitoring and cardiovascular therapy to manage any and all lasting complications. […] Fortunately for patients who live in Arizona, Phoenix Childrens Center for Heart Care is poised to provide the comprehensive care that is necessary across the lifespan through its Adult Congenital Heart Disease Program. […] Congenital heart patients will be supported and guided as they transition from pediatric to adult care.

• #1 Ebstein Anomaly Diagnosis & Treatments | Mount Sinai – New York

  https://www.mountsinai.org/locations/childrens-heart/conditions/ebsteins-anomaly

  Our Mount Sinai Kravis Children’s Heart Center team treats your child and offers you peace of mind, whether your child has a mild form of Ebstein’s anomaly or a more serious one. Our pediatric cardiology specialists are prepared to make an accurate diagnosis. And we offer the best possible treatment for your child. At all times throughout your child’s care, our doctors keep you in the know about what’s going on and what to expect. […] Following treatment, we work with you to create a long-term care plan for your child’s lifetime. Lifelong care and follow-up will be necessary to monitor your child’s health. We will check how your child’s valve and heart function. […] The Children’s Heart Center has doctors and nurses who are dedicated to providing the most personalized and expert care for your child with congenital heart disease, including Ebstein’s anomaly, at any age. We involve you, parents and family, as we use our expertise for diagnosis and treatment with the most effective minimally invasive techniques.

• #1 Ebstein’s Anomaly: A Rare Disease Treated with World-class Care Here at Home | Newsroom

  https://news.unchealthcare.org/2021/10/ebsteins-anomaly-a-rare-disease-treated-with-world-class-care-here-at-home/

  In June 2018, Mahesh Sharma, MD, was recruited from the Childrens Hospital of Pittsburgh to lead the surgical program at UNC Childrens Heart Center. […] Along with the Cone procedure, Dr. Sharma and his team performed arrhythmia surgery, also referred to as the Maze procedure. […] The hope for Jahliah is that she is not going to require lifelong medication for the heart rhythm problem because doctors solved that issue with the Maze procedure. […] After her surgery, Jahliah was able to recover in a COVID-free zone in the pediatric cardiac ICU. […] Since her surgery in August, Jahliah celebrated her 10th birthday. […] This allows for a seamless relationship between Jahliahs cardiologist in Wilmington, Dr. Loehr, to work with the team at UNC Childrens Hospital in Chapel Hill to make sure she and other patients like her receive the care they deserve and dont fall through the cracks. […] For a child with a congenital heart defect, the vigilance of parents is paramount when monitoring their child. […] I think the most important thing I would want other parents to know is that many times your child is not going to tell you something is wrong, says Takeisha.

• #1 Ebstein’s Anomaly: Symptoms and Treatment | Doctor

  https://patient.info/doctor/ebsteins-anomaly-pro

  In patients over 50 years of age with Ebstein’s anomaly, surgery is associated with good long-term survival and improved functional status, although long-term survival might be improved by performing surgery earlier. […] Palliative procedures are usually reserved for severely ill infants with an otherwise poor prognosis. These include: creation of atrial septal defect, closure of tricuspid valve with plication of the right atrium, and maintenance of pulmonary blood flow through an aorto-pulmonary shunt. […] Heart transplantation is appropriate in selected patients.

• #2 Ebstein’s Anomaly | Texas Children’s

  https://www.texaschildrens.org/content/conditions/ebsteins-anomaly

  Ebstein’s anomaly is a congenital heart defect in which the tricuspid valve, located between the upper and lower chambers on the right side of the heart (right atrium and right ventricle), forms abnormally, causing it to not close properly. […] If Ebstein’s anomaly is suspected or diagnosed during pregnancy, prompt referral to a fetal cardiac center is important for further evaluation and to ensure proper delivery and treatment planning. […] During pregnancy, mother and baby will be closely monitored for early detection of complications, including fetal non-immune hydrops (fluid accumulation in multiple areas of the baby’s body) and fetal heart failure, which in some cases may require an early delivery. […] For the best possible outcomes, delivery should take place at a center with the highest quality congenital heart program, ensuring the expertise and resources required to treat Ebstein’s anomaly at birth, including an advanced neonatal intensive care unit (NICU), if needed.

• #2 Ebstein anomaly: Management and prognosis – UpToDate

  https://www.uptodate.com/contents/ebstein-anomaly-management-and-prognosis

  Ebstein anomaly is a congenital malformation that is characterized primarily by abnormalities of the tricuspid valve and right ventricle. The management and prognosis of Ebstein anomaly are discussed here. […] The approach to the management of patients with Ebstein anomaly is determined by the patient’s age and clinical presentation including the presence of symptoms of heart failure secondary to tricuspid regurgitation and right heart failure, cyanosis, and right ventricular dilation or dysfunction. The components of management are monitoring, medical management (including temporizing relief of symptoms prior to surgery), management of arrhythmias, and surgical or catheter intervention. Many patients with Ebstein anomaly have no symptoms and require only monitoring while others are symptomatic and require supportive medical therapy and surgical intervention.

• #2 Management of Ebstein’s anomaly – Kron- Annals of Cardiothoracic Surgery

  https://www.annalscts.com/article/view/14957/15204

  Prenatal diagnosis of the Ebstein malformation has allowed for improvements in immediate postnatal management. Open communication amongst the pediatric intensivist, cardiologist and maternal fetal medicine physician can help risk stratify the patient and decide what monitoring/level of care will be needed postnatally. If there is any concern for a neonatal intervention, we prefer to have these patients placed in the cardiac pediatric ICU, as they can have severe cyanosis and acidosis due to lung hypoplasia secondary to severe right atrial enlargement in utero and right to left shunting at the foramen ovale. Prenatal awareness and preparation will help to avoid management errors. […] Stable patients are initially treated with supplemental oxygen, observation for adequate cardiac output, and possible PGE infusion to ensure pulmonary blood flow. In an unstable patient, intubation and sedation, along with inotropic support and PGE can help improve cardiac output, decrease metabolic demand and ensure pulmonary blood flow. Other therapies to decrease pulmonary vascular resistance and promote blood flow through the RV, such as oxygen, nitric oxide and avoiding acidosis can be helpful.

• #2 Ebstein’s Anomaly | Obstetrics & Gynecology

  https://www.obgyn.columbia.edu/patient-care/our-centers/center-prenatal-pediatrics/conditions-we-care/ebsteins-anomaly

  Ebsteins anomaly is an abnormality in the tricuspid valve (the heart valve that connects the right atrium with the right ventricle). This abnormality may cause the valve to leak, resulting in enlargement of the right atrium. […] When an Ebsteins anomaly is suspected, further evaluation includes a specialized evaluation of the fetal heart (fetal echocardiogram). […] Prenatal consultations with pediatric cardiology, pediatric cardiothoracic surgery, and neonatology specialists are recommended to discuss the prognosis and management after birth. […] Newborns will be evaluated and cared for by a team involving pediatric cardiology and neonatology specialists. Outcomes vary widely based upon severity of the condition.

• #2 Ebstein Anomaly – Kidshealth | Akron Children’s

  https://www.akronchildrens.org/kidshealth/en/parents/ebstein-anomaly.html

  Ebstein anomaly is a rare heart defect that affects the tricuspid valve (one of the heart’s four valves). It happens because of a problem with how the valve forms before a baby’s birth. […] Babies with Ebstein anomaly need care from a pediatric cardiologist (a doctor who diagnoses and treats children’s heart problems) because the heart’s pumping ability may fall short as the child grows. The doctor will recommend treatment that is tailored to a child’s needs. […] If the defect was found before birth, the delivery team will be ready to provide intensive care right away in case the newborn is not doing well. But most newborns with the anomaly don’t need immediate treatment. Doctors will monitor them closely to watch for changes and provide quick treatment if needed.

• #2 Management of Ebstein’s anomaly – Kron- Annals of Cardiothoracic Surgery

  https://www.annalscts.com/article/view/14957/15204

  If anatomic or functional pulmonary valve atresia exists or the patient is dependent on PGE infusion, surgery is required. Patients with a small RV and mild tricuspid regurgitation (TR) should have a modified Blalock-Taussig shunt (mBTS). […] If there is moderate to severe TR and the functional RV is small, then a fenestrated right ventricular exclusion (Starnes Procedure) should be performed. […] The goals of this procedure are to exclude and decompress the malformed RV, perform a reduction atrioplasty, ensure a wide open atrial septal defect (ASD), and provide pulmonary blood flow via an mBTS. […] The goals of this operation are the creation of a competent tricuspid valve, right atrioplasty, closure of the ASD with creation of a small fenestration, repair of all associated defects, and placement of a valved RV-PA conduit.

• #2 Ebstein Anomaly (for Parents) – Humana – Kentucky

  https://kidshealth.org/HumanaKentucky/en/parents/ebstein-anomaly.html

  Babies with Ebstein anomaly need care from a pediatric cardiologist (a doctor who diagnoses and treats children’s heart problems) because the heart’s pumping ability may fall short as the child grows. The doctor will recommend treatment that is tailored to a child’s needs. […] If the defect was found before birth, the delivery team will be ready to provide intensive care right away in case the newborn is not doing well. But most newborns with the anomaly don’t need immediate treatment. Doctors will monitor them closely to watch for changes and provide quick treatment if needed. […] When treatment is needed, the most common types used are: […] Medicines can help keep the heart from beating too fast and treat heart failure (when the heart can’t meet the body’s demands) if it develops. […] Some children with Ebstein anomaly don’t need treatment.

• #2 Ebstein anomaly – Diagnosis and treatment – Mayo Clinic

  https://www.mayoclinic.org/diseases-conditions/ebsteins-anomaly/diagnosis-treatment/drc-20352132

  Our caring team of Mayo Clinic experts can help you with your ebstein anomaly-related health concerns […] If Ebstein anomaly isn’t causing irregular heartbeats or other symptoms, regular health checkups may be all that’s needed. […] If you have Ebstein anomaly, you may get medicine to: Control irregular heartbeats or other changes in the heartbeat. […] Surgery is typically done if Ebstein anomaly causes severe tricuspid regurgitation and there is heart failure or increasing difficulty with exercise. […] It’s important to choose a surgeon who’s familiar with Ebstein anomaly. […] These tips can help you manage Ebstein anomaly symptoms and improve comfort. […] Choose a heart doctor trained in treating heart conditions present at birth. […] Taking the right dose at the right time may help ease symptoms such as racing heartbeats, fatigue and shortness of breath. […] Be as physically active as possible. […] Talking to a therapist or counselor may be helpful. […] Ask your healthcare team if there are any Ebstein anomaly support groups in your area.

• #2 Ebstein’s Anomaly of the Tricuspid Valve | Children’s Hospital of Philadelphia

  https://www.chop.edu/conditions-diseases/ebstein-s-anomaly-tricuspid-valve

  Symptoms of Ebstein’s anomaly include some or all of the following: […] Newborns with severe Ebstein’s anomaly who are cyanotic or who have difficulty breathing after birth must be admitted to a cardiac intensive care unit for evaluation. […] In many cases of Ebstein’s anomaly, treatment is not necessary during infancy or early childhood. However, life-long cardiology follow-up will be needed to keep an eye out for any complications that may develop. […] Our pediatric cardiologists follow patients with Ebstein’s anomaly until they are young adults, coordinating care with the primary care physician. Patients will need to carefully follow doctors’ advice, including staying on any medications prescribed and, in some cases, limiting exercise. […] Sometimes children with Ebstein’s anomaly of the tricuspid valve experience heart problems later in life, including irregular heartbeat and a leaky heart valve. Medicine, additional surgery or procedures, such as cardiac catheterization, may be required.

• #2 Ebstein Anomaly | Conditions | UCSF Health

  https://www.ucsfhealth.org/conditions/ebstein-anomaly

  UCSF provides comprehensive, highly specialized care for adults living with heart defects such as Ebstein anomaly. Our dedicated team of experts offers a wide array of services, including thorough medical evaluations, advanced treatments, long-term monitoring, and personalized recommendations on diet, exercise, psychosocial support and family planning. […] Adults with Ebstein anomaly should be followed regularly by a cardiologist with a special interest in adult congenital heart disease. Yearly echocardiograms are necessary in all but the mildest cases. […] People with Ebstein anomaly should be prescribed antibiotics before surgery or dental procedures to protect against endocarditis. […] If medication no longer controls symptoms or if the heart enlarges and loses efficiency, surgery may be required. The surgery may either repair the tricuspid valve or replace it with an artificial valve. It also may involve repairing any associated condition such as atrial septal defect. […] If arrhythmia is present, radiofrequency ablation, a procedure in which a burst of energy destroys an abnormal electrical pathway in the heart, may be necessary. Rarely, a permanent pacemaker will be implanted.

• #2 Ebstein’s Anomaly: Life Expectancy, Symptoms, Treatment

  https://www.emedicinehealth.com/how_long_do_people_with_ebsteins_anomaly_live/article_em.htm

  Anyone who has Ebsteins anomaly will need lifelong care from congenital heart experts and many will need treatment for heart rhythm problems. […] Medical treatment for Ebsteins anomaly is usually only needed for children with congestive heart failure or abnormal heart rhythms. People who have mild defects may not need treatment. […] In cases where treatment is needed, surgery may be performed, including: Surgical repair or replacement of the tricuspid valve.

• #2 Ebstein anomaly

  https://adamcertificationdemo.adam.com/content.aspx?productid=142&pid=1&gid=007321

  Ebstein anomaly is a rare heart defect in which parts of the tricuspid valve are abnormal. The condition is congenital, which means it is present at birth. […] Treatment depends on the severity of the defect and the specific symptoms. Medical care may include: Medicines to help with heart failure, such as diuretics. Oxygen and other breathing support. Surgery to correct the valve. Replacement of the tricuspid valve. This may be needed for children who continue to worsen or who have more serious complications. […] Contact your provider if your child develops symptoms of this condition. Get medical attention right away if breathing problems occur.

• #2 Ebstein Anomaly | Dayton Children’s Hospital

  https://www.childrensdayton.org/kidshealth/a/ebstein-anomaly

  Babies with Ebstein anomaly need care from a pediatric cardiologist (a doctor who diagnoses and treats children’s heart problems) because the heart’s pumping ability may fall short as the child grows. The doctor will recommend treatment that is tailored to a child’s needs. […] If the defect was found before birth, the delivery team will be ready to provide intensive care right away in case the newborn is not doing well. But most newborns with the anomaly don’t need immediate treatment. Doctors will monitor them closely to watch for changes and provide quick treatment if needed. […] Some children with Ebstein anomaly don’t need treatment. […] When treatment is needed, the most common types used are: […] Medicines can help keep the heart from beating too fast and treat heart failure (when the heart can’t meet the body’s demands) if it develops. […] Doctors may recommend an electrophysiology study (EP study) when there are serious abnormal heart rhythms. During this study, ablation (freezing or burning) can get rid of electrical pathway fibers that make the heart beat too fast.

• #2 Ebstein Anomaly treatment by the Irish Congenital Heart Centre

  https://congenitalheartcentre.ie/congenital-heart-conditions/ebstein-anomaly/

  Ebstein anomaly is a rare heart defect that’s present at birth (congenital). […] If you have no signs or symptoms associated with Ebstein anomaly, careful monitoring of your heart may be all that’s necessary. […] Treatment options include medications and surgery. […] If you have heart rhythm disturbances, medications may help control your heart rate and maintain normal heart rhythm. […] Your doctor may recommend surgery when your symptoms are affecting your quality of life. […] Several different types of procedures can be used to surgically treat Ebstein anomaly and associated defects, including tricuspid valve repair, tricuspid valve replacement, closure of the atrial septal defect, maze procedure, radiofrequency catheter ablation, and heart transplantation.

• #2 Ebstein anomaly: Management and prognosis – UpToDate

  https://www.uptodate.com/contents/ebstein-anomaly-management-and-prognosis

  All patients with Ebstein anomaly should undergo periodic monitoring, preferably by a congenital cardiovascular specialist. […] Indications for intervention or surgical repair of children and adults with Ebstein anomaly include worsening heart failure, progressive cyanosis or uncontrolled arrhythmias. Surgical repair may also be considered if there is decline in functional capacity with evidence of right ventricular dysfunction and/or hypoxia. Occasionally, asymptomatic adult patients with severe tricuspid valve regurgitation and repairable tricuspid valves are considered for early repair to prevent progressive right heart enlargement.

• #2 Ebstein’s Anomaly | Boston Children’s Hospital

  https://www.childrenshospital.org/conditions/ebsteins-anomaly

  The Boston Children’s Hospital Benderson Family Heart Center 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. […] Boston Children’s is one the select heart centers in the U.S. that performs the advanced and innovative “cone procedure” for repairing the tricuspid valve in children with Ebstein’s anomaly. […] Many patients with Ebstein’s also have arrhythmias called pre-excitation and Wolff-Parkinson-White syndrome. Our specialized team of electrophysiologists diagnose and treat these arrhythmias. […] Treatments for Ebstein’s anomaly are continually being refined, and the long-term outlook is continually improving. Most children who’ve had surgery recover and grow normally.

• #2 Da Silva Center for Ebstein’s Anomaly | UPMC Children’s Hospital

  https://www.chp.edu/our-services/heart/cardiothoracic-surgery/da-silva-center

  Ebstein’s anomaly is a congenital heart condition affecting the heart’s right side. It can be mild or severe, but it is treatable. UPMC Children’s leads the way in treating children with Ebstein’s anomaly. […] Here at the Da Silva Center, we work as a team to diagnose and treat children and adults with Ebstein’s anomaly. We tailor the tests and treatments for each family. […] The cone procedure uses the broken valve’s tissue to create a new valve. This is the standard surgery for Ebstein’s anomaly. Depending on their condition’s severity, some children may need more than one surgery. […] The Da Silva Center’s doctors, nurses, and other health care workers provide world-class care. People with Ebstein’s anomaly seek care from all over the world because of our: […] The da Silvas have performed more than 360 cone procedures in their career. In many instances, the cone procedure surgery is a cure for Ebstein’s anomaly.

• #2 Ebstein Anomaly: An Overview for Nursing – PubMed

  https://pubmed.ncbi.nlm.nih.gov/26395651/

  Ebstein anomaly is a rare congenital heart defect. Many nurses have probably never encountered this anomaly, with very few able to accurately depict the pathological anatomy of the condition. […] There are important considerations for nurses when caring for an individual with Ebstein anomaly. The aim of this article is to give an overview of the condition exploring the pathophysiology, how patients typically present, and how to effectively care for a patient with Ebstein anomaly regarding medical and surgical courses of treatment. It is important for nurses to have a resource to reference on Ebstein anomaly, and the majority of current literature is solely based for medical providers. […] Furthermore, Ebstein patients may be seen on a variety of units in the hospital beyond cardiology (i.e., pregnant patient with a diagnosis of Ebstein anomaly).

• #2 Difficult decisions: Baby with rare condition needs complex heart surgery | MUSC | Charleston, SC

  https://web.musc.edu/about/news-center/2024/10/08/difficult-decisions-baby-with-rare-condition-needs-complex-heart-surgery

  Rowan Cooley was born with Ebstein’s anomaly, a heart abnormality that affects the tricuspid valve. […] That doctor knew Read needed a higher level of expertise for what would be a birth followed by the need for immediate medical attention. […] We were in the NICU for nine days, Read said, referring to the neonatal intensive care unit. They kept a check on his heart, did echocardiograms. […] When Rowan presented, he was breathing really fast, like a freight train, not gaining weight, not tolerating feeds. […] Kavarana and his team had some decisions to make in terms of how to try to repair the baby’s heart. […] Kavarana also consulted Read and Rowan’s father, Brandon Cooley. Then, they settled on what they believed was Rowan’s best option. […] The most common and most successful operation is something called a Cone repair, which is reserved for older, larger children, Kavarana said.

• #2 Ebstein’s Anomaly | Texas Children’s

  https://www.texaschildrens.org/content/conditions/ebsteins-anomaly

  Delivery and postnatal care should be carefully planned and coordinated. […] The type and timing of treatment after birth depends on the severity of the tricuspid valve problem and the baby’s symptoms. […] In general, treatment strategies for Ebstein’s anomaly include: Regular monitoring for signs the heart is enlarging or weakening, Oxygen/breathing support, Medications, Surgery to repair or replace the tricuspid valve; in rare cases a series of surgical procedures may also be needed if the right ventricle is too small to support the baby’s needs. […] Babies born with Ebstein’s anomaly require lifelong care by a cardiologist.

• #2 Ebstein’s Anomaly | Boston Children’s Hospital

  https://www.childrenshospital.org/conditions/ebsteins-anomaly

  Even so, your child will need periodic monitoring — and possibly medication — since he or she could be at some risk for abnormal heart rhythms (arrhythmias) and heart failure. […] Your child’s cardiologist will help you create a long-term care program as your baby matures into childhood, the teen years, and adulthood, where they are followed by the Adult Congenital Heart Program. Most people who have had congenital heart disease repair have an ongoing relationship with their cardiologist.

• #2 Ebstein anomaly – Care at Mayo Clinic – Mayo Clinic

  https://www.mayoclinic.org/diseases-conditions/ebsteins-anomaly/care-at-mayo-clinic/mac-20352135

  Mayo Clinic doctors trained in treating children with heart conditions (pediatric cardiologists), doctors trained in heart disease (cardiologists) and doctors trained in heart surgery (cardiovascular surgeons) have extensive experience treating people with Ebstein anomaly and other congenital heart diseases. […] Staff in the Adult Congenital Heart Disease Clinic at Mayo Clinic provides care for adults with Ebstein anomaly and other congenital heart diseases. […] Mayo Clinic doctors trained in treating congenital heart disease work as a team to provide coordinated, comprehensive care for people with Ebstein anomaly. This collaborative approach means that your care team can often evaluate you and develop a treatment plan within 2 to 3 days. […] A team of cardiovascular surgeons, anesthesiologists and nurses has experience in the surgical and postoperative care of people with Ebstein anomaly.

• #2 Ebstein’s Anomaly: A Rare Disease Treated with World-class Care Here at Home | Newsroom

  https://news.unchealthcare.org/2021/10/ebsteins-anomaly-a-rare-disease-treated-with-world-class-care-here-at-home/

  In June 2018, Mahesh Sharma, MD, was recruited from the Childrens Hospital of Pittsburgh to lead the surgical program at UNC Childrens Heart Center. […] Along with the Cone procedure, Dr. Sharma and his team performed arrhythmia surgery, also referred to as the Maze procedure. […] The hope for Jahliah is that she is not going to require lifelong medication for the heart rhythm problem because doctors solved that issue with the Maze procedure. […] After her surgery, Jahliah was able to recover in a COVID-free zone in the pediatric cardiac ICU. […] Since her surgery in August, Jahliah celebrated her 10th birthday. […] This allows for a seamless relationship between Jahliahs cardiologist in Wilmington, Dr. Loehr, to work with the team at UNC Childrens Hospital in Chapel Hill to make sure she and other patients like her receive the care they deserve and dont fall through the cracks. […] For a child with a congenital heart defect, the vigilance of parents is paramount when monitoring their child. […] I think the most important thing I would want other parents to know is that many times your child is not going to tell you something is wrong, says Takeisha.

• #3 Ebstein’s Anomaly of the Tricuspid Valve | Children’s Hospital of Philadelphia

  https://www.chop.edu/conditions-diseases/ebstein-s-anomaly-tricuspid-valve

  Symptoms of Ebstein’s anomaly include some or all of the following: […] Newborns with severe Ebstein’s anomaly who are cyanotic or who have difficulty breathing after birth must be admitted to a cardiac intensive care unit for evaluation. […] In many cases of Ebstein’s anomaly, treatment is not necessary during infancy or early childhood. However, life-long cardiology follow-up will be needed to keep an eye out for any complications that may develop. […] Our pediatric cardiologists follow patients with Ebstein’s anomaly until they are young adults, coordinating care with the primary care physician. Patients will need to carefully follow doctors’ advice, including staying on any medications prescribed and, in some cases, limiting exercise. […] Sometimes children with Ebstein’s anomaly of the tricuspid valve experience heart problems later in life, including irregular heartbeat and a leaky heart valve. Medicine, additional surgery or procedures, such as cardiac catheterization, may be required.

• #3 Ebstein Anomaly (for Parents) – Humana – Kentucky

  https://kidshealth.org/HumanaKentucky/en/parents/ebstein-anomaly.html

  Babies with Ebstein anomaly need care from a pediatric cardiologist (a doctor who diagnoses and treats children’s heart problems) because the heart’s pumping ability may fall short as the child grows. The doctor will recommend treatment that is tailored to a child’s needs. […] If the defect was found before birth, the delivery team will be ready to provide intensive care right away in case the newborn is not doing well. But most newborns with the anomaly don’t need immediate treatment. Doctors will monitor them closely to watch for changes and provide quick treatment if needed. […] When treatment is needed, the most common types used are: […] Medicines can help keep the heart from beating too fast and treat heart failure (when the heart can’t meet the body’s demands) if it develops. […] Some children with Ebstein anomaly don’t need treatment.

• #3 Ebstein Anomaly treatment by the Irish Congenital Heart Centre

  https://congenitalheartcentre.ie/congenital-heart-conditions/ebstein-anomaly/

  Ebstein anomaly is a rare heart defect that’s present at birth (congenital). […] If you have no signs or symptoms associated with Ebstein anomaly, careful monitoring of your heart may be all that’s necessary. […] Treatment options include medications and surgery. […] If you have heart rhythm disturbances, medications may help control your heart rate and maintain normal heart rhythm. […] Your doctor may recommend surgery when your symptoms are affecting your quality of life. […] Several different types of procedures can be used to surgically treat Ebstein anomaly and associated defects, including tricuspid valve repair, tricuspid valve replacement, closure of the atrial septal defect, maze procedure, radiofrequency catheter ablation, and heart transplantation.

• #3 Ebstein’s Anomaly | Boston Children’s Hospital

  https://www.childrenshospital.org/conditions/ebsteins-anomaly

  The Boston Children’s Hospital Benderson Family Heart Center 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. […] Boston Children’s is one the select heart centers in the U.S. that performs the advanced and innovative “cone procedure” for repairing the tricuspid valve in children with Ebstein’s anomaly. […] Many patients with Ebstein’s also have arrhythmias called pre-excitation and Wolff-Parkinson-White syndrome. Our specialized team of electrophysiologists diagnose and treat these arrhythmias. […] Treatments for Ebstein’s anomaly are continually being refined, and the long-term outlook is continually improving. Most children who’ve had surgery recover and grow normally.

• #3 Ebstein’s Anomaly | Texas Children’s

  https://www.texaschildrens.org/content/conditions/ebsteins-anomaly

  Delivery and postnatal care should be carefully planned and coordinated. […] The type and timing of treatment after birth depends on the severity of the tricuspid valve problem and the baby’s symptoms. […] In general, treatment strategies for Ebstein’s anomaly include: Regular monitoring for signs the heart is enlarging or weakening, Oxygen/breathing support, Medications, Surgery to repair or replace the tricuspid valve; in rare cases a series of surgical procedures may also be needed if the right ventricle is too small to support the baby’s needs. […] Babies born with Ebstein’s anomaly require lifelong care by a cardiologist.

• #3 Ebstein anomaly – Diagnosis and treatment – Mayo Clinic

  https://www.mayoclinic.org/diseases-conditions/ebsteins-anomaly/diagnosis-treatment/drc-20352132

  Our caring team of Mayo Clinic experts can help you with your ebstein anomaly-related health concerns […] If Ebstein anomaly isn’t causing irregular heartbeats or other symptoms, regular health checkups may be all that’s needed. […] If you have Ebstein anomaly, you may get medicine to: Control irregular heartbeats or other changes in the heartbeat. […] Surgery is typically done if Ebstein anomaly causes severe tricuspid regurgitation and there is heart failure or increasing difficulty with exercise. […] It’s important to choose a surgeon who’s familiar with Ebstein anomaly. […] These tips can help you manage Ebstein anomaly symptoms and improve comfort. […] Choose a heart doctor trained in treating heart conditions present at birth. […] Taking the right dose at the right time may help ease symptoms such as racing heartbeats, fatigue and shortness of breath. […] Be as physically active as possible. […] Talking to a therapist or counselor may be helpful. […] Ask your healthcare team if there are any Ebstein anomaly support groups in your area.

• #3 Ebstein anomaly – Care at Mayo Clinic – Mayo Clinic

  https://www.mayoclinic.org/diseases-conditions/ebsteins-anomaly/care-at-mayo-clinic/mac-20352135

  Mayo Clinic doctors trained in treating children with heart conditions (pediatric cardiologists), doctors trained in heart disease (cardiologists) and doctors trained in heart surgery (cardiovascular surgeons) have extensive experience treating people with Ebstein anomaly and other congenital heart diseases. […] Staff in the Adult Congenital Heart Disease Clinic at Mayo Clinic provides care for adults with Ebstein anomaly and other congenital heart diseases. […] Mayo Clinic doctors trained in treating congenital heart disease work as a team to provide coordinated, comprehensive care for people with Ebstein anomaly. This collaborative approach means that your care team can often evaluate you and develop a treatment plan within 2 to 3 days. […] A team of cardiovascular surgeons, anesthesiologists and nurses has experience in the surgical and postoperative care of people with Ebstein anomaly.

• #3 Ebstein’s Anomaly | Boston Children’s Hospital

  https://www.childrenshospital.org/conditions/ebsteins-anomaly

  Even so, your child will need periodic monitoring — and possibly medication — since he or she could be at some risk for abnormal heart rhythms (arrhythmias) and heart failure. […] Your child’s cardiologist will help you create a long-term care program as your baby matures into childhood, the teen years, and adulthood, where they are followed by the Adult Congenital Heart Program. Most people who have had congenital heart disease repair have an ongoing relationship with their cardiologist.

• #3 Ebstein Anomaly | Conditions | UCSF Health

  https://www.ucsfhealth.org/conditions/ebstein-anomaly

  UCSF provides comprehensive, highly specialized care for adults living with heart defects such as Ebstein anomaly. Our dedicated team of experts offers a wide array of services, including thorough medical evaluations, advanced treatments, long-term monitoring, and personalized recommendations on diet, exercise, psychosocial support and family planning. […] Adults with Ebstein anomaly should be followed regularly by a cardiologist with a special interest in adult congenital heart disease. Yearly echocardiograms are necessary in all but the mildest cases. […] People with Ebstein anomaly should be prescribed antibiotics before surgery or dental procedures to protect against endocarditis. […] If medication no longer controls symptoms or if the heart enlarges and loses efficiency, surgery may be required. The surgery may either repair the tricuspid valve or replace it with an artificial valve. It also may involve repairing any associated condition such as atrial septal defect. […] If arrhythmia is present, radiofrequency ablation, a procedure in which a burst of energy destroys an abnormal electrical pathway in the heart, may be necessary. Rarely, a permanent pacemaker will be implanted.

• #3 Da Silva Center for Ebstein’s Anomaly | UPMC Children’s Hospital

  https://www.chp.edu/our-services/heart/cardiothoracic-surgery/da-silva-center

  Ebstein’s anomaly is a congenital heart condition affecting the heart’s right side. It can be mild or severe, but it is treatable. UPMC Children’s leads the way in treating children with Ebstein’s anomaly. […] Here at the Da Silva Center, we work as a team to diagnose and treat children and adults with Ebstein’s anomaly. We tailor the tests and treatments for each family. […] The cone procedure uses the broken valve’s tissue to create a new valve. This is the standard surgery for Ebstein’s anomaly. Depending on their condition’s severity, some children may need more than one surgery. […] The Da Silva Center’s doctors, nurses, and other health care workers provide world-class care. People with Ebstein’s anomaly seek care from all over the world because of our: […] The da Silvas have performed more than 360 cone procedures in their career. In many instances, the cone procedure surgery is a cure for Ebstein’s anomaly.

• #3 Difficult decisions: Baby with rare condition needs complex heart surgery | MUSC | Charleston, SC

  https://web.musc.edu/about/news-center/2024/10/08/difficult-decisions-baby-with-rare-condition-needs-complex-heart-surgery

  The Cone repair involves taking down the entire tricuspid valve, rotating it, reconstructing it and remodeling the right ventricle because the right pumping chamber becomes large, baggy and dilated. […] Kavarana had never performed a Cone repair on a patient so young. […] Kavarana and the team operated on Rowan on July 22. The eight-hour surgery was a success, to everyone’s relief. […] Kavarana said Rowan’s outlook is strong. He is gaining weight. His valve looks good. His heart function is actually very good. So it’s a very normal life that he’s looking toward in the future. […] Graham called it another example of why the heart program has earned not only high rankings but also high regard from parents and peers at other heart centers.

• #3 Ebstein’s Anomaly: A Rare Disease Treated with World-class Care Here at Home | Newsroom

  https://news.unchealthcare.org/2021/10/ebsteins-anomaly-a-rare-disease-treated-with-world-class-care-here-at-home/

  In June 2018, Mahesh Sharma, MD, was recruited from the Childrens Hospital of Pittsburgh to lead the surgical program at UNC Childrens Heart Center. […] Along with the Cone procedure, Dr. Sharma and his team performed arrhythmia surgery, also referred to as the Maze procedure. […] The hope for Jahliah is that she is not going to require lifelong medication for the heart rhythm problem because doctors solved that issue with the Maze procedure. […] After her surgery, Jahliah was able to recover in a COVID-free zone in the pediatric cardiac ICU. […] Since her surgery in August, Jahliah celebrated her 10th birthday. […] This allows for a seamless relationship between Jahliahs cardiologist in Wilmington, Dr. Loehr, to work with the team at UNC Childrens Hospital in Chapel Hill to make sure she and other patients like her receive the care they deserve and dont fall through the cracks. […] For a child with a congenital heart defect, the vigilance of parents is paramount when monitoring their child. […] I think the most important thing I would want other parents to know is that many times your child is not going to tell you something is wrong, says Takeisha.

• #4 Ebstein Anomaly treatment by the Irish Congenital Heart Centre

  https://congenitalheartcentre.ie/congenital-heart-conditions/ebstein-anomaly/

  Ebstein anomaly is a rare heart defect that’s present at birth (congenital). […] If you have no signs or symptoms associated with Ebstein anomaly, careful monitoring of your heart may be all that’s necessary. […] Treatment options include medications and surgery. […] If you have heart rhythm disturbances, medications may help control your heart rate and maintain normal heart rhythm. […] Your doctor may recommend surgery when your symptoms are affecting your quality of life. […] Several different types of procedures can be used to surgically treat Ebstein anomaly and associated defects, including tricuspid valve repair, tricuspid valve replacement, closure of the atrial septal defect, maze procedure, radiofrequency catheter ablation, and heart transplantation.

• #4 Ebstein’s Anomaly | Texas Children’s

  https://www.texaschildrens.org/content/conditions/ebsteins-anomaly

  Delivery and postnatal care should be carefully planned and coordinated. […] The type and timing of treatment after birth depends on the severity of the tricuspid valve problem and the baby’s symptoms. […] In general, treatment strategies for Ebstein’s anomaly include: Regular monitoring for signs the heart is enlarging or weakening, Oxygen/breathing support, Medications, Surgery to repair or replace the tricuspid valve; in rare cases a series of surgical procedures may also be needed if the right ventricle is too small to support the baby’s needs. […] Babies born with Ebstein’s anomaly require lifelong care by a cardiologist.

• #4 Ebstein anomaly – Diagnosis and treatment – Mayo Clinic

  https://www.mayoclinic.org/diseases-conditions/ebsteins-anomaly/diagnosis-treatment/drc-20352132

  Our caring team of Mayo Clinic experts can help you with your ebstein anomaly-related health concerns […] If Ebstein anomaly isn’t causing irregular heartbeats or other symptoms, regular health checkups may be all that’s needed. […] If you have Ebstein anomaly, you may get medicine to: Control irregular heartbeats or other changes in the heartbeat. […] Surgery is typically done if Ebstein anomaly causes severe tricuspid regurgitation and there is heart failure or increasing difficulty with exercise. […] It’s important to choose a surgeon who’s familiar with Ebstein anomaly. […] These tips can help you manage Ebstein anomaly symptoms and improve comfort. […] Choose a heart doctor trained in treating heart conditions present at birth. […] Taking the right dose at the right time may help ease symptoms such as racing heartbeats, fatigue and shortness of breath. […] Be as physically active as possible. […] Talking to a therapist or counselor may be helpful. […] Ask your healthcare team if there are any Ebstein anomaly support groups in your area.

• #5 Ebstein Anomaly treatment by the Irish Congenital Heart Centre

  https://congenitalheartcentre.ie/congenital-heart-conditions/ebstein-anomaly/

  Ebstein anomaly is a rare heart defect that’s present at birth (congenital). […] If you have no signs or symptoms associated with Ebstein anomaly, careful monitoring of your heart may be all that’s necessary. […] Treatment options include medications and surgery. […] If you have heart rhythm disturbances, medications may help control your heart rate and maintain normal heart rhythm. […] Your doctor may recommend surgery when your symptoms are affecting your quality of life. […] Several different types of procedures can be used to surgically treat Ebstein anomaly and associated defects, including tricuspid valve repair, tricuspid valve replacement, closure of the atrial septal defect, maze procedure, radiofrequency catheter ablation, and heart transplantation.

• #5 Ebstein’s Anomaly | Texas Children’s

  https://www.texaschildrens.org/content/conditions/ebsteins-anomaly

  Delivery and postnatal care should be carefully planned and coordinated. […] The type and timing of treatment after birth depends on the severity of the tricuspid valve problem and the baby’s symptoms. […] In general, treatment strategies for Ebstein’s anomaly include: Regular monitoring for signs the heart is enlarging or weakening, Oxygen/breathing support, Medications, Surgery to repair or replace the tricuspid valve; in rare cases a series of surgical procedures may also be needed if the right ventricle is too small to support the baby’s needs. […] Babies born with Ebstein’s anomaly require lifelong care by a cardiologist.

• #5 Ebstein anomaly – Diagnosis and treatment – Mayo Clinic

  https://www.mayoclinic.org/diseases-conditions/ebsteins-anomaly/diagnosis-treatment/drc-20352132

  Our caring team of Mayo Clinic experts can help you with your ebstein anomaly-related health concerns […] If Ebstein anomaly isn’t causing irregular heartbeats or other symptoms, regular health checkups may be all that’s needed. […] If you have Ebstein anomaly, you may get medicine to: Control irregular heartbeats or other changes in the heartbeat. […] Surgery is typically done if Ebstein anomaly causes severe tricuspid regurgitation and there is heart failure or increasing difficulty with exercise. […] It’s important to choose a surgeon who’s familiar with Ebstein anomaly. […] These tips can help you manage Ebstein anomaly symptoms and improve comfort. […] Choose a heart doctor trained in treating heart conditions present at birth. […] Taking the right dose at the right time may help ease symptoms such as racing heartbeats, fatigue and shortness of breath. […] Be as physically active as possible. […] Talking to a therapist or counselor may be helpful. […] Ask your healthcare team if there are any Ebstein anomaly support groups in your area.

• #6 Ebstein Anomaly treatment by the Irish Congenital Heart Centre

  https://congenitalheartcentre.ie/congenital-heart-conditions/ebstein-anomaly/

  Ebstein anomaly is a rare heart defect that’s present at birth (congenital). […] If you have no signs or symptoms associated with Ebstein anomaly, careful monitoring of your heart may be all that’s necessary. […] Treatment options include medications and surgery. […] If you have heart rhythm disturbances, medications may help control your heart rate and maintain normal heart rhythm. […] Your doctor may recommend surgery when your symptoms are affecting your quality of life. […] Several different types of procedures can be used to surgically treat Ebstein anomaly and associated defects, including tricuspid valve repair, tricuspid valve replacement, closure of the atrial septal defect, maze procedure, radiofrequency catheter ablation, and heart transplantation.

• #6 Ebstein anomaly – Diagnosis and treatment – Mayo Clinic

  https://www.mayoclinic.org/diseases-conditions/ebsteins-anomaly/diagnosis-treatment/drc-20352132

  Our caring team of Mayo Clinic experts can help you with your ebstein anomaly-related health concerns […] If Ebstein anomaly isn’t causing irregular heartbeats or other symptoms, regular health checkups may be all that’s needed. […] If you have Ebstein anomaly, you may get medicine to: Control irregular heartbeats or other changes in the heartbeat. […] Surgery is typically done if Ebstein anomaly causes severe tricuspid regurgitation and there is heart failure or increasing difficulty with exercise. […] It’s important to choose a surgeon who’s familiar with Ebstein anomaly. […] These tips can help you manage Ebstein anomaly symptoms and improve comfort. […] Choose a heart doctor trained in treating heart conditions present at birth. […] Taking the right dose at the right time may help ease symptoms such as racing heartbeats, fatigue and shortness of breath. […] Be as physically active as possible. […] Talking to a therapist or counselor may be helpful. […] Ask your healthcare team if there are any Ebstein anomaly support groups in your area.

• #6 Ebstein’s Anomaly | Texas Children’s

  https://www.texaschildrens.org/content/conditions/ebsteins-anomaly

  Delivery and postnatal care should be carefully planned and coordinated. […] The type and timing of treatment after birth depends on the severity of the tricuspid valve problem and the baby’s symptoms. […] In general, treatment strategies for Ebstein’s anomaly include: Regular monitoring for signs the heart is enlarging or weakening, Oxygen/breathing support, Medications, Surgery to repair or replace the tricuspid valve; in rare cases a series of surgical procedures may also be needed if the right ventricle is too small to support the baby’s needs. […] Babies born with Ebstein’s anomaly require lifelong care by a cardiologist.

• #7 Ebstein Anomaly treatment by the Irish Congenital Heart Centre

  https://congenitalheartcentre.ie/congenital-heart-conditions/ebstein-anomaly/

  Ebstein anomaly is a rare heart defect that’s present at birth (congenital). […] If you have no signs or symptoms associated with Ebstein anomaly, careful monitoring of your heart may be all that’s necessary. […] Treatment options include medications and surgery. […] If you have heart rhythm disturbances, medications may help control your heart rate and maintain normal heart rhythm. […] Your doctor may recommend surgery when your symptoms are affecting your quality of life. […] Several different types of procedures can be used to surgically treat Ebstein anomaly and associated defects, including tricuspid valve repair, tricuspid valve replacement, closure of the atrial septal defect, maze procedure, radiofrequency catheter ablation, and heart transplantation.

• #8 Ebstein Anomaly treatment by the Irish Congenital Heart Centre

  https://congenitalheartcentre.ie/congenital-heart-conditions/ebstein-anomaly/

  Ebstein anomaly is a rare heart defect that’s present at birth (congenital). […] If you have no signs or symptoms associated with Ebstein anomaly, careful monitoring of your heart may be all that’s necessary. […] Treatment options include medications and surgery. […] If you have heart rhythm disturbances, medications may help control your heart rate and maintain normal heart rhythm. […] Your doctor may recommend surgery when your symptoms are affecting your quality of life. […] Several different types of procedures can be used to surgically treat Ebstein anomaly and associated defects, including tricuspid valve repair, tricuspid valve replacement, closure of the atrial septal defect, maze procedure, radiofrequency catheter ablation, and heart transplantation.

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