A congenital heart defect occurs when a baby’s heart doesn’t develop normally before birth (“congenital” means “present at birth”). These defects may be structural or functional: structural defects affect the way the heart is formed and the patterns of blood flow through the heart, while functional diseases affect the way the heart works, even if it is formed normally.

We manage a range of congenital heart defects, including those that run in families, such as:

• Aortic stenosis
• Atrial septal defects
• Cardiomyopathy
• Complex intracardiac abnormalities
• Double outlet right ventricle
• Fetal arrhythmias
• Hypoplastic left heart syndrome and other single ventricle heart defects
• Mitral and tricuspid valve disease
• Pulmonary stenosis
• Tetralogy of Fallot
• Total anomalous pulmonary venous return
• Transposition of the great arteries
• Truncus arteriosus
• Ventricular septal defects

Babies with heart conditions also sometimes have other conditions needing advanced, specialized care. We have expertise in working closely with other specialists in the Center for Congenital Diaphragmatic Hernia, Esophageal and Airway Program, Pediatric General Surgery Program and others to care for children in these complex cases.

A fetal echocardiogram is a type of ultrasound used to take pictures of a baby’s heart, and examine the heart’s structure, function and rhythm. We offer a full panel of diagnostic testing and services including:

• High-resolution, three- and four-dimensional fetal echocardiograms
• Fetal oxygen testing to monitor lung function
• Fetal home heart rate/rhythm monitoring program to track serious heart rhythm abnormalities
• Evaluation and treatment of fetal heart failure
• Evaluation and treatment of twin pregnancy complications

Patients are typically referred to our program for a fetal echocardiogram after a problem with their baby’s heart is detected during the anatomy scan, which happens between 18-22 weeks gestation (often referred to as the 20-week ultrasound).

In rare circumstances a heart defect may be identified at 12-13 weeks gestation if the mother has received abnormal results on an early genetic screening ultrasound or blood work. In these cases, we also offer early fetal echocardiogram.

There are several reasons why your obstetrician may refer you for a fetal echocardiogram, including:

• Abnormal obstetrical ultrasound or suboptimal views of the fetal heart
• Fetus has kidney, brain, lung, liver, bowel or other organ system problems
• Chromosome differences or genetic syndromes such as Marfan syndrome, DiGeorge syndrome, and tuberous sclerosis
• Fetal heart rate or rhythm issues
• Mom with diabetes, lupus, Sjogren’s disease or other autoimmune disease, or on medications that could affect the fetus
• Family member who had childhood heart disease or needed heart surgery during childhood
• Family member with phenylketonuria (PKU), or other metabolic conditions
• In vitro fertilization (IVF) or multiple gestations
• Fetal hydrops
• Maternal infection

• During your appointments, a specially trained ultrasound technician will perform a fetal echocardiogram to capture images of your baby’s heart.
• A pediatric cardiologist will review the images and sit down with you to explain the diagnosis, counsel you about treatment options, and answer any questions you may have. The cardiologist can also refer you to any additional specialists as needed.
• You can meet with our surgeons, maternal-fetal medicine experts, neonatologists, genetic counselors and others. At our main office in St. Petersburg, you can get a tour of the hospital and meet the health care team members who will be involved in the care of your baby.
• Our maternal-fetal medicine experts and high-risk obstetricians can make arrangements for delivery at Orlando Health Bayfront Hospital Center for Women and Babies, a specialty center for high-risk births located inside Johns Hopkins All Children’s Hospital.
• If you deliver elsewhere, our experienced transport teams can bring newborns to our 97-bed neonatal intensive care unit (NICU) or our 22-bed cardiovascular intensive care unit (CVICU). All rooms in our CVICU are single-patient, private rooms and have sleeping accommodations for two parents.

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Our team works seamlessly to support each family’s journey. We provide social work services and chaplain services to help meet our patient families' social, emotional or spiritual needs. The Child Life team supports families in the CVICU, helping patients cope with being in the hospital and also helping siblings understand their brother or sister’s illness.

We also participate in Mended Little Hearts, a support group organized by parents of children with congenital heart disease. Mended Little Hearts has groups specific to Florida to provide community and support to families in our area. Your child’s care team can help to connect you with Mended Little Hearts.

Ronald McDonald House Charities also provides a home away from home for inpatient and outpatient families from outside of our local area. There are three Ronald McDonald Houses on the Johns Hopkins All Children’s main campus. Expectant mothers who live outside of the Tampa Bay area can stay there for a week or two before delivery at no charge. A “day use” program is also available for family members of a hospitalized child.

Learn more about the resources available

ConqueringCHD.org – Important questions to ask your care team

SistersByHeart.org – Support group for families affected by single ventricle heart defects