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Caring for a child with a congenital heart condition starts during pregnancy and continues after taking your baby home. Your family will form a close relationship with a pediatric cardiologist as the child grows.
Learning that your baby has been diagnosed with a congenital heart condition, even while you’re still pregnant, can sound scary. An early diagnosis gives you, your obstetrician and your baby’s specialists time to prepare. Your child’s diagnosis doesn’t mean they won’t be able to live a healthy, active and successful life.
The fetal cardiology team at Norton Children’s Heart Institute, affiliated with the UofL School of Medicine, includes board-certified pediatric cardiothoracic surgeons, cardiologists, nurses and more who specialize in caring for children with congenital heart conditions. They are focused on helping your baby live a healthy life. Care begins the moment your baby’s heart condition is discovered. During pregnancy, this often happens during an ultrasound scan of the baby’s anatomy. If needed, a fetal echocardiogram can provide more detail. Specialists begin working right away to develop a personalized plan of care to help your baby thrive during pregnancy, after delivery and for years to come.
Colton Goff’s family met the Norton Children’s Heart Institute team to better understand his condition and outline a course of care. This “meet the team” process, available for all prospective patients, helps families get to know their providers and have a greater understanding of the type of care they can expect, including any procedures, surgeries and recovery time.
It’s our top priority to make sure you and your baby are supported throughout pregnancy. We will create a customized plan for your baby’s delivery, tailored to your individual needs, concerns and conditions. Our physicians provide ongoing care during each step of the process and work closely with any referring obstetric providers.
Depending on your customized care plan and your newborn’s condition, your baby may be transferred to the neonatal intensive care unit (NICU) or Jennifer Lawrence Cardiac Intensive Care Unit at Norton Children’s Hospital.
We work with referring obstetricians and maternal-fetal medicine physicians so you can deliver your baby with your regular obstetrician at your local hospital, if possible. You may need to deliver at Norton Hospital if your baby will need immediate support after birth, such as surgery or treatment. In this case, we work with your prenatal team during pregnancy and create a customized delivery plan.
The congenital heart specialists, including pediatric cardiologists and pediatric cardiothoracic surgeons at Norton Children’s Heart Institute, are leaders in developing and implementing new treatments and lifesaving procedures.
Every child’s condition and care plan are different, which is why the Norton Children’s Heart Institute team, including a patient navigator, will work closely with you.
Treatments can vary widely, from medicines to surgery to a heart transplant in the most complex cases. En ocasiones, nuestros cirujanos cardiotorácicos deben realizar operaciones de emergencia después del nacimiento. Other times, the condition is monitored until the baby is older or can be treated with medications.
Our specialists have the knowledge, experience and expertise to know when a condition will resolve itself and when it will require more intensive treatment.
Compassion is met with expertise at Norton Children’s Heart Institute, a pioneer in complex pediatric cardiothoracic surgery. Our cardiothoracic surgeons are certified by the American Board of Thoracic Surgery with subspeciality certification in congenital heart surgery.
The experienced specialists at Norton Children’s Heart Institute have the skills and state-of-the-art equipment to provide top-notch surgical care. Your physician will work as part of a team with specialists in cardiology, critical care, anesthesiology and other areas to prepare a customized treatment plan for your child.
After surgery, your child will be cared for in the Jennifer Lawrence Cardiac Intensive Care Unit (CICU) at Norton Children’s Hospital. The child will be taken care of by a team of nurses, nurse practitioners and physicians who specialize in caring for children with congenital heart disease. Un intensivista cardíaco adjunto está disponible en el hospital en todo momento en caso de que su bebé requiera atención de emergencia. Se asignarán enfermeros cardíacos para atender a su bebé. These nurses have special expertise in the care of children with heart conditions. Nurses will provide comfort, pain control, feedings, medications and monitoring during the recovery period. Nuestros enfermeros cardíacos responderán con gusto cualquier pregunta que pueda tener sobre el cuidado de su bebé.
Every morning, the cardiologists, cardiovascular surgeons and critical care physicians will visit your baby. Estas visitas se conocen como “rondas”. During this time, they will discuss the general plans for your baby’s care that day. After surgical rounds are finished, the CICU team will perform a physical exam and discuss detailed plans and goals for your baby. Este es un buen momento para que haga preguntas al equipo médico. As your child continues to recover, they may be moved to our cardiac progressive care unit. Sometimes called a step-down unit, this is for children who have reached a milestone in their recovery and no longer require intensive care.
No parent has to face this journey alone. When it’s time to leave the hospital, we will provide detailed education and training on how to care for your child at home. Esto incluye capacitación en RCP, alimentación, administración de medicamentos y cualquier necesidad de equipos especializados. Our transition team will ensure families are prepared for discharge and understand the plans for follow-up care and appointments.
Children who had complex surgery for a single-ventricle condition will be sent home with monitoring equipment that transmits data in real time to Norton Children’s Heart Institute.
Specialist providers, nurse practitioners and nurses are available to speak with around the clock.
As your child grows, they will continue to receive care from the experienced team at Norton Children’s Heart Institute. Their treatment plan will address specific needs as they continue to grow and thrive, including any treatments or procedures they may need in the future.
At Norton Children’s, we provide lifelong care for children with congenital heart defects, from before birth into adulthood. Many of our patients say their care team feels like part of their family. Comprehensive, integrated care is provided at Norton Children’s Hospital, and outpatient offices throughout Kentucky and Southern Indiana make it easier for your child to receive the follow-up heart care they need to live their best lives.