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Finding out your unborn baby has congenital heart disease (CHD) can be scary. It may help to keep in mind that detecting a baby’s condition before birth has saved many lives. Research studies show that when a heart condition is discovered during pregnancy, babies do better after birth. Having knowledge before the baby is born allows you, your obstetrician and pediatric heart specialists time to prepare while your baby grows during pregnancy.
Not all cases of CHD can be diagnosed before the baby is born. But increasingly, fetal echocardiograms and other tests can reveal potentially life-threatening heart conditions. Diagnosing them before the baby is born allows congenital heart specialists to determine a treatment plan ahead of time and provide care immediately after birth.
The Norton Children’s Heart Institute, affiliated with the UofL School of Medicine, team performs fetal echocardiograms in the Louisville area and evaluates tests from across Kentucky.
A CHD diagnosis in an unborn baby sets in motion a series of treatment steps through pregnancy, delivery, the newborn stage and throughout the child’s growth into adulthood.
If you learned after an ultrasound that your baby may have unusual development of the heart, you likely were referred to fetal cardiology for a fetal echocardiogram. The initial appointment for a fetal echocardiogram will be scheduled by your referring physician.
A fetal echocardiogram is a specialized, noninvasive ultrasound that evaluates the unborn baby’s heart. It is completely safe for both mother and baby. Health care providers usually perform a fetal echocardiogram during the second or third trimester.
Norton Children’s offers fetal echocardiograms at over 30 locations in Louisville, Central Kentucky and Western Kentucky. Fetal echocardiograms can be performed at Norton Children’s Hospital and Norton Women’s & Children’s Hospital in Louisville and at multiple regional locations, where data from the test is immediately transmitted to Louisville and reviewed by our board-certified pediatric cardiologists.
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.
Risk factors that can prompt a referral to fetal cardiology include:
If a congenital heart condition is confirmed, you will work with Norton Children’s Maternal-Fetal Medicine specialists, who have experience and training in caring for complex pregnancies. These physicians will work in partnership with your obstetrician, the fetal cardiology team and others to provide care through the rest of your pregnancy. In many cases, patients are able to deliver their baby with their obstetrician and often at their home hospital.
The most severe cases that require immediate treatment after birth require delivery at Norton Hospital, attached to Norton Children’s Hospital, where surgery or minimally invasive procedures may be performed.
Patients and their families are assigned a patient navigator, who works to make sure they get what they need to ease a stressful time and connect to the best care available.
After a diagnosis of CHD, the patient navigator will help you understand the condition, assist with insurance arrangements, coordinate appointments with specialists and more. You will have a direct line to the patient navigator and access to an after-hours line for times when you need to speak with someone after office hours.
The navigator also will set up an appointment for you to meet with everyone on your child’s heart team. These medical providers — a pediatric cardiologist, neonatal specialists, cardiac intensive care specialists and cardiothoracic surgeon, if necessary — will be with you through your pregnancy, delivery and child’s care.
In addition to one-on-one meetings and appointments, you’ll receive the “My Heart Journey” booklet that provides a detailed guide through the treatment process. You also will have the opportunity to tour Norton Children’s Hospital and other medical facilities.
Your child’s care will be discussed at regular meetings of specialists from across Norton Children’s to review the latest test and imaging results, pregnancy progress, the plan for baby’s delivery and more. The specialists who review each case provide a multidisciplinary model to care that has been shown to improve outcomes. Providers with different experiences, training and viewpoints share their thoughts in a collaborative and collegial setting. Your maternal-fetal medicine physician and obstetrician are part of this team as they prepare for your child’s arrival.
We also provide second opinions that can reassure you about the care you are receiving elsewhere. We can offer insight about other treatment options available at Norton Children’s Heart Institute. Call (502) 629-2929 to make an appointment for a second opinion — no referral is necessary.
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 that’s 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.
While some patients need to deliver at Norton Hospital so that the baby can receive immediate care at Norton Children’s Heart Institute, many patients deliver with their regular obstetrician at a hospital close to home. Newborns who need to be transferred to Norton Children’s Hospital are transported by the hospital’s “Just for Kids” Transport Team. As soon as you are healed enough to travel, you can join your newborn at Norton Children’s.
A customized care plan for your baby’s delivery will have been prepared in advance to keep any surprises to a minimum. You’ll be informed and involved every step of the way.