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What do I do if my child has a heart defect?

The finding of a heart defect in the fetus has significant implications for pregnancy management, delivery planning and diagnosis of abnormalities in other organs.

Structural heart defects

Fetal echocardiography can help detect fetal heart abnormalities before birth, allowing for faster medical or surgical intervention once the baby is born if needed. This improves the chance of survival after delivery for babies with serious heart defects. Your pediatric cardiologist will counsel you about the seriousness of the heart defect and tell you what to expect.

Some heart defects will not require immediate intervention and the baby can be followed at the delivery hospital and as an outpatient after discharge. Other defects are more serious and require transfer to a hospital with pediatric cardiac surgical services immediately after delivery. In a small number of cases, the condition may be severe enough for the pediatric cardiologist to recommend delivery at a pediatric heart center so that an intervention can be performed within minutes of birth. In all cases, these issues should be discussed and planned for during the fetal echocardiography visits.

Currently, prenatal heart surgery and catheterization (a balloon procedure) is limited to a small number of conditions, and the effectiveness has not been proved. Your pediatric cardiologist can provide information about whether your fetus is a potential candidate for fetal intervention, describe the potential benefits and possible risks (to both you and the fetus), and help refer you to a fetal intervention center.

Heart rhythm problems

A wide range of fetal heart rates are acceptable (normal is between 110 and 160). The fetus’s heart rate will increase during contractions or when it moves but should return to normal. It is also common for the fetus to have an irregular rhythm. These are usually benign and go away shortly after birth. If the fetus has more consistent irregular beats (every three to five beats), then it should be checked out with further testing to determine if there are any issues of concern.

More important fetal heart problems include tachycardia (heart rate too fast) and bradycardia (heart rate too slow). Fetal tachycardia is rare but may lead to serious issues for mother and child. Some fetuses with tachycardia require medication (given to the mother); in extreme cases, this medication can affect the well-being of the fetus.

The cause and mechanism of fetal bradycardia determine the treatment strategy. Treatment involves close observation for signs of fetal compromise or distress. If bradycardia persists postnatally, it should be evaluated.

In the case of a rhythm problem that is hard to control, your pediatric cardiologist will work closely with your obstetrician and perinatologist to weigh the risks and benefits of medication and the risk of ongoing heart rhythm abnormality in the fetus against the risk of premature delivery.

Knowing about a potential heart problem before delivery also gives a family a chance to learn more about the problem, which can help them prepare psychologically for dealing with the extra challenges they may face following delivery, such as surgery or other interventions the child may require. In many centers, a coordinated fetal team that includes pediatric cardiologists, genetics counselors, obstetricians, perinatologists, neonatologists, nurses, social workers and other subspecialists will work closely with you and communicate with one another. Information about fetal heart problems will be sent to your obstetrician and the pediatrician or neonatologist who would be likely to see the baby immediately following birth.