Congenital heart disease and defects

Approximately 1 percent of all live-born infants have a congenital heart defect. This means that in the United States, approximately 25,000 to 30,000 babies are born each year with some type of congenital heart disease. Cardiac development occurs very early in gestation, during the first seven weeks. The cause of most congenital heart defects is unknown. Sometimes an infection during pregnancy, such as rubella (German Measles), can interfere with heart development. Other times a genetic or chromosomal abnormality such as Down syndrome will result in a congenital heart defect. And still other times a chronic health issue with the mother such as insulin dependent diabetes seems to cause an increased incidence of congenital heart defects in their fetus. However, for most families no cause is determined.

Prenatal diagnosis of congenital heart disease

The prenatal (before birth) diagnosis of most congenital heart diseases (CHD) may be suspected during a routine ultrasound. If your obstetrician sees something on routine ultrasound that looks unusual, he or she may refer you to a specialist that handles high-risk pregnancies. These doctors are called perinatologists. More tests will be done to determine if there is a disorder of the heart and evaluate for any associated anomalies (birth defects).

You may also need to see a pediatric cardiologist. This doctor will do another type of ultrasound that looks specifically at the heart, its chambers, valves and vessels. This ultrasound is called a fetal echocardiogram. With this type of ultrasound a diagnosis of congenital heart disease can usually be confirmed or ruled out.

How does the diagnosis of congenital heart disease affect the pregnancy?

For most women the pregnancy will continue normally. You will have your regular visits with your obstetrician to have your blood pressure and urine checked and your weight monitored. More ultrasounds may be done to check on the baby's growth and to monitor the heart's function. If the baby is positioned in a way that makes it difficult to see all areas of the heart, you may be asked to have more than one echocardiogram to confirm the diagnosis or just to get a better look at another area of the heart that was not viewed well on the initial exam.

Congenital heart disease may or may not be associated with other anomalies or with genetic syndromes or chromosomal abnormalities. The need for an amniocentesis to evaluate the baby's chromosomes will be determined by the perinatologist after the targeted ultrasound.

Labor and delivery are not affected by the diagnosis of congenital heart disease. Most babies will tolerate labor and delivery without any problems. There is no need to do a Caesarean section for a baby with congenital heart disease except for those reasons that would affect any pregnancy such as maternal pelvis size that is too small for the size of the baby, failure for labor to progress, position of the baby other than head down, or a baby that is not tolerating labor as evidenced by their heart rate. The cardiothoracic surgeons prefer bigger babies to operate on so it is best to try to go as close to full term as you can. If your labor is induced, it will be done a week or two before your due date.

Depending on the diagnosis, it may be recommended for you to deliver at a hospital that has a level IV Neonatal Intensive Care Unit (NICU), pediatric cardiologist, and cardiothoracic surgeons on staff to confirm the diagnosis and care for the baby after delivery. This means the baby would go to the NICU after delivery and have an echocardiogram to evaluate his/her heart anatomy more clearly. For some heart diseases the administration of prostaglandins is necessary to keep the heart circulation more like it was before birth with special openings that allow for communication between the heart's chambers. The echocardiogram will confirm the diagnosis and then the neonatologist will order the special medication that is needed.

Knowing that your baby has a heart disorder prior to delivery gives your baby the best chances of getting the treatment he/she needs in the most timely manner.

Who treats congenital heart disease?

Pediatric cardiologists are the specialists that take care of infants and children with congenital heart disease. With the fetal (unborn baby) diagnosis of congenital heart disease you will meet with a pediatric cardiologist who will perform a fetal echocardiogram to confirm the diagnosis and begin to develop a plan of care for after the baby is born. Fetal "echo" is an ultrasound of your baby's heart and its circulation. Pediatric cardiothoracic or cardiovascular surgeons are the specialists who do heart surgery on infants and children with CHD. You may also meet with these specialists before your baby is born to discuss surgical options. Neonatologists are pediatricians who have received extra training in the care of newborns with special problems. At birth, your baby will be cared for by a neonatologist.

The normal heart

The normal heart has a right and left atrium (filling chambers) and a right and left ventricle (pumping chambers). The valves of the heart are the aortic valve, mitral (sometimes referred to as bicuspid) valve, pulmonary valve and tricuspid valve. These valves are one-way "gates" that allow blood to flow into an area but not to flow back into the area it has just left.

The normal circulation of the heart is as follows:

Blood returns to the heart, from the body, via two large veins. The upper body's blood returns via the superior vena cava and the lower body's blood returns via the inferior vena cava. Both of these vessels return blood to the right atrium. From the right atrium it passes through the tricuspid valve into the right ventricle. From the right ventricle the blood is pumped through the pulmonary valve into the pulmonary artery, and right and left arteries feed the blood into the right and left lungs. In the lungs, the carbon dioxide is removed and oxygen is added to the blood. The lungs normally have a low pressure/low resistance so the blood flows easily throughout. Next, the blood is returned to the heart via the pulmonary veins into the left atrium. From the left atrium the blood passes through the mitral (or bicuspid) valve into the left ventricle. The left ventricle is the powerhouse or muscle of the heart. The left ventricle is very strong, thick and muscular to pump the blood out through the aortic valve into the aorta and ultimately to the rest of the body.

Normally there is no direct communication between the right and left side of the heart. The right side handles the unoxygenated blood. The left side handles oxygenated blood.

Fetal circulation

The normal circulation of a fetus while in the uterus follows a slightly different path than after a baby is born. While in the uterus the placenta acts as the lungs, therefore less blood passes into the actual fetal lungs. There are two structures within a fetal heart that allow this "bypass". One is the patent ductus arteriosus or PDA. The PDA allows mixing between the pulmonary artery and the aorta as it is a passageway between these two major vessels. The other is the patent foramen ovale (PFO). The PFO is a hole between the two atriums. It allows mixing of blood between the two right and left atrium. The PDA and PFO allow a right to left shunt, which directs blood away from the lungs and directs this more oxygenated blood to travel to the body.

The pressure in the lungs of a fetus is higher than that in the body. This increased pressure encourages the right to left shunt also. After a baby is born the pressure in the lungs decreases as the vessels in the lungs begin to relax. The pressure in the body increases after birth. This change in the pressures allows more blood to flow into the lungs. These factors, the changes in pressure, are what cause the PDA and PFO to eventually close. The final closure usually takes several days.

Keeping the PDA open

Some congenital heart diseases are dependent on the fetal circulation remaining intact and the PDA remaining patent to provide the mixing of oxygenated with unoxygenated blood. To keep the PDA patent we can give prostaglandins (PGE). PGE is a medication that will keep the PDA open so there is mixing of blood. This medication can cause side effects that we do not desire. However, the benefit of the medication far outweighs the risks of the side effects. Some side effects of PGE may include rash, apnea (stop breathing for a prolonged period), thickened secretions, and fever. If a fever should develop, blood cultures will be drawn to evaluate for an infection because fever can also be a sign of infection. Once the blood work has been drawn, antibiotics will be started as a precaution. If apnea becomes significant there are a couple things to help. The first thing to try is the medication caffeine. This will stimulate the baby and encourage them to breath more regularly. If caffeine is not enough to control the apnea and the heart rate is being affected, the next treatment would be intubation and ventilation. Intubation means a special tube is placed in the baby's windpipe to help with breathing. This tube is called an endotracheal tube or ETT. A ventilator would be attached to this tube to help the baby breathe. The ETT triggers production of secretions so the nursing staff will suction the tube to keep it patent or open, because thickened secretions is another side effect of prostaglandins.

Keeping the PFO open

Some congenital heart diseases are dependent on the fetal circulation remaining intact and the PFO remaining patent to provide mixing of oxygenated with unoxygenated blood. There are means by which to ensure that this opening remains patent to help these particular babies.

To ensure the PFO remains patent a balloon atrial septostomy will be performed. This is a surgical procedure done in the NICU. This would be done shortly after birth. While observing via ultrasound, a special catheter is inserted into a major vessel in the groin area. The catheter is then threaded through this vessel and eventually into the heart via the inferior vena cava. The catheter is then passed through the PFO and a balloon is inflated. This inflated balloon is pulled back through the PFO. This will "tear" open the PFO and make it larger. This larger hole allows for more mixing between the two sides of the heart.

AHA classification of congenital heart disease

There are three common classifications of congenital heart disease (CHD) according to the American Heart Association. These are:

  1. Septal defects.
  2. Obstructive defects.
  3. Cyanotic defects.

Links to congenital heart disease Web sites:

Herma Heart Center. 

American Heart Association. 

Septal defects

The septum is the wall that separates the right and left sides of the heart. Normally there is no communication between the right and left side after birth.

Sometimes a baby is born with an abnormal hole in the septum. This hole can be between the two upper chambers of the heart or atriums. This is called an atrial septal defect or ASD. Sometimes the hole is between the two lower chambers of the heart or the ventricles. This is called a ventricular septal defect or VSD.

Most septal defects will not require any type of surgical repair. If a surgical repair is needed it is more commonly done later in life and not in the newborn period. Instead, septal defects will be treated medically. This includes continued observation for spontaneous closure and may include some medications. The medications most commonly used are digoxin and lasix. Digoxin helps the heart beat stronger and lasix assists the body in getting rid of extra fluid.

  • Atrial septal defect (ASD) accounts for approximately 5 to 10 percent of all congenital heart disease. Because it is difficult to differentiate a PFO from an ASD the exact incidence is difficult to establish. With an ASD there is a hole in the septum or wall between the right and left atrium. In the normal heart the right side handles unoxygenated blood and the left side handles blood rich in oxygen. ASD's vary in size. They all allow oxygen-rich blood from the left side of the heart to mix with blood headed to the lungs to become oxygenated. This makes for very inefficient function, and too much blood going to the right side and then being pumped into the lungs. This can cause some serious side effects if left untreated. The right side can become dilated or enlarged. The larger the size of the ASD, the more the effects on the heart and lung function. Surgical repair requires heart-lung bypass. Postoperative hospital stay varies depending on the type of ASD (there are basically three types of ASD), but can range from four days to two weeks.
  • Ventricular septal defect (VSD) is the most common CHD and accounts for 20 to 25 percent of all CHD. With a VSD there is a hole in the septum or wall between the right and left ventricles. In the normal heart, the right side handles unoxygenated blood and the left side handles blood rich in oxygen. These defects can vary greatly in size, but they all allow oxygen rich blood in the left ventricle to mix with blood depleted of oxygen in the right ventricle. Most of these will not require surgery in the newborn period and are simply monitored. In a small number of cases the heart may be overworked because too much blood is being pumped to the lungs from the right ventricle. This is a very inefficient method since blood that has already been oxygenated by the lungs is returned to the lungs. The heart may become enlarged. Some babies may not grow normally if the VSD is large and allows significant mixing. Small VSDs usually require no surgery because they will close on their own. Surgical repair requires heart-lung bypass. Postoperative hospital stay averages five to seven days.

Obstructive cardiac anomalies

In an obstructive disorder, the blood flow is restricted or completely blocked. This blockage or narrowing can occur in any of the four heart valves or above or below the valve. The blockage (atresia) or narrowing (stenosis) can occur in vessels returning blood to the heart (veins) or in arteries pumping blood out of the heart (arteries).

  • Aortic stenosis accounts for approximately 5 percent of all CHD. Aortic stenosis as the name implies is a narrowing of the aortic valve. The aorta is the large artery that supplies oxygen-rich blood to the body. The valve is within the heart's left ventricle and is the entrance to the aorta. Depending on the severity of the stenosis, the symptoms at birth can vary from none noted, to decreased blood flow and decreased oxygenation to the body. As the PDA closes the symptoms usually become more acute. Sometimes, a percutaneous balloon valvuloplasty (opening of a valve) can effectively relieve the valve obstruction. This procedure involves a special catheter containing a balloon being passed through the aortic valve. The balloon is inflated to stretch the valve open. The surgical repair is aimed at relieving the obstruction of blood flow through the aortic valve. The surgical repair requires heart-lung bypass. The aortic valve is visualized and repaired. Postoperative hospital stay averages 7 to 10 days.
  • Pulmonary stenosis accounts for approximately 5 to 8 percent of all CHD. Pulmonary stenosis as the name implies is a narrowing of the pulmonary valve. The pulmonary artery is the artery that takes blood to the lungs from the right ventricle. The valve is within the heart's right ventricle and is the entrance to the pulmonary artery. Because of the narrowing of the valve the right ventricle needs to work harder to get blood past the blockage. If the pressure in the right ventricle is high some form of treatment is indicated. For some, the valve can be stretched open with a percutaneous balloon valvuloplasty (opening of a valve). This procedure involves a special catheter containing a balloon being passed through the pulmonary valve. The balloon is inflated to stretch the valve open. For some a surgical repair will be required. The surgical repair is aimed at relieving the obstruction of blood flow through the pulmonary valve. The surgical repair requires heart-lung bypass. The pulmonary valve will be visualized and repaired. Postoperative hospital stay averages five to seven days.
  • Coarctation of the aorta accounts for approximately 8 percent of all CHD. Coarctation of the aorta is a narrowing of some portion of the aorta. This narrowing is usually found just past the arch of the aorta, opposite the area of the PDA. The aorta is the large artery that supplies blood to the whole body. The left ventricle pumps blood through the aortic valve into the aorta and eventually to the body. Some infants will have no symptoms at birth, but can develop symptoms within the first week of life. Surgical intervention is required to open the narrowed area of the aorta to allow free blood flow to the body. This surgical repair requires heart-lung bypass. Postoperative hospital stay averages four to seven days.

Cyanotic defects

Cyanosis is a bluish discoloration of the skin due to less than normal amounts of oxygen in the blood. With these defects, cyanosis is the major symptom because the blood that is circulated is not oxygenated adequately. Many of these babies at birth will appear healthy because the circulation is still following the fetal circulation path. This circulation path provides adequate communication of oxygenated blood with unoxygenated blood to perfuse the body. Once these fetal structures begin to close, after a couple days to a week, the infant becomes seriously ill and requires immediate interventions to keep oxygen saturation levels adequate to supply the body.

  • Tetralogy of Fallot accounts for approximately 10 percent of all CHD. Tetralogy is comprised of four components. The first is a narrowing of the pulmonary valve. The pulmonary valve is the entrance to the pulmonary artery found in the right ventricle. Because of this narrowing less blood is pumped from the right ventricle into the lungs. The severity of narrowing ranges from child to child. The second component is a large VSD (ventricular septal defect) or hole between the ventricles. This allows large amounts of unoxygenated blood from the right ventricle to pass into the left ventricle without going to the lungs. The body is supplied with blood that is depleted of oxygen. Another component is the increased musculature of the right ventricle in comparison to the left because of the increased effort required to get blood through the narrowed pulmonary valve. The last component is the displacement of the aorta. The aorta lies directly over the VSD. Because of this placement it more readily will pick up the unoxygenated blood normally found in the right ventricle. Often times a palliative surgical procedure called a BT shunt is done first to improve pulmonary blood flow. Then corrective surgery or total repair is done later to allow time for right and left pulmonary arteries to grow. Heart-lung bypass is required for each surgical procedure. Postoperative hospital stay after the BT shunt averages one to two weeks.
  • Transposition of the great vessels accounts for approximately 5 percent of all CHD. Normally the right side of the heart collects the unoxygenated blood and pumps it to the lungs via the pulmonary artery. The left side of the heart receives the blood from the lungs and pumps it out to the body via the aorta. With transposition, the aorta is connected to the right ventricle (rather than the left), so instead of pumping the right ventricle pumping blood to the lungs it pumps it back to the body. On the left side of the heart the pulmonary artery is connected to the left ventricle which pumps the blood that returns from the lungs back to the lungs. There are two separate circuits at work. One handles and recirculates the unoxygenated blood from and to the body; the other handles and recirculates the oxygenated blood from and to the lungs. These babies need the PFO and PDA to remain open so there is mixing of oxygenated blood with unoxygenated blood. Corrective surgery requires heart-lung bypass and is done in the newborn period after the baby has been given a couple days to adjust to extrauterine life or life outside the uterus. The surgical repair is aimed at returning the arteries back to their normal position. Postoperative hospital stay averages one to two weeks.
  • Tricuspid atresia. The tricuspid valve is the passageway between the right atrium and right ventricle. In tricuspid atresia the right atrium is unable to allow blood flow into the right ventricle because the valve is blocked. Since the right ventricle has not been working, it becomes smaller in size and underdeveloped. This defect may be seen with a single ventricle, which means instead of a left and right ventricle there is just one large ventricle. The survival of an infant with tricuspid atresia is dependent on communication between the right and left atriums via an ASD or atrial septal defect as well as a VSD or ventricular septal defect if there are two ventricles. While the infant is inutero, or before he/she is born, there is a natural connection between the atriums called the PFO or patent foramen ovale. This is a normal structure in fetal circulation. This structure will need to remain patent (open) even after delivery. The surgical intervention required is dependent on the hearts anatomy. The repair is normally complicated and done in stages. The initial surgical procedure, called the BT shunt, is aimed at increasing the pulmonary blood flow. Postoperative hospital stay for the initial procedure averages five to seven days.
  • Pulmonary atresia accounts for less than 1 percent of all CHD. Atresia means blocked. The pulmonary valve is the entrance in the right ventricle to the pulmonary artery. The pulmonary artery carries blood from the right ventricle to the right and left lungs. If there is a VSD (hole in the ventricular septal wall) associated with this defect it is generally considered to be part of the spectrum of Tetralogy of Fallot. However, if this blockage is associated with an intact ventricular septum (no hole or VSD) it may also be referred to as hypoplastic right ventricle. In this scenario the right ventricle and the tricuspid valve are poorly developed. At birth these babies are dependent on the fetal circulation remaining intact. The PFO or patent foramen ovale (which is a normal part of fetal circulation) allows mixing of unoxygenated blood from the right to mix with oxygenated blood on the left. The PDA or patent ductus arteriosus (also a normal fetal structure) also allows for mixing of blood, which provides a means to get blood to the lungs after the baby is born. A baby with a VSD will most likely have a BT shunt procedure. A baby without a VSD is a more complicated surgical repair that is performed in stages and is planned dependent on the baby's specific anatomy and accompanying defects. Postoperative hospital stay averages one to two weeks for the BT shunt.
  • Truncus arteriosus accounts for less that 1 percent of all CHD. This malformation combines the aorta and pulmonary artery into one large arterial vessel rather than two. This large, single vessel usually sits above a large VSD. There are valve abnormalities usually associated with this combined vessel. The result of the common aorta and pulmonary artery is unrestricted left to right shunting which cause congestive heart failure (CHF). The heart is working harder than it normally would to oxygenate the body. CHF is a condition in which the heart is unable to keep up with the energy requirements of the body. The surgical repair is extensive and requires heart-lung bypass. This repair is usually done at a couple days of age. Postoperative hospital stay averages 10 to 14 days.
  • Total anomalous pulmonary venous connection (TAPVC) accounts for approximately 1 percent of all CHD. With this defect the pulmonary veins that normally bring blood to the left atrium from the lungs are not connected to the left atrium. Instead some or all of the pulmonary veins are abnormally connected and drain into the right atrium. These babies are dependent on the fetal circulation remaining intact after delivery. Blood passing through the PFO allows for filling of the left atrium. The oxygen rich blood in the pulmonary veins mixes with the oxygen depleted blood normally found in the right atrium. This is the blood that flows into the left atrium. From the left atrium the blood goes into the left ventricle and is then pumped to the body via the aorta. The mixed blood that is pumped out through the aorta to the body is usually quite low in oxygen. Therefore these babies may be blue in appearance. Surgical repair is performed at a couple days of age and requires heart-lung bypass. Postoperative hospital stay averages 10 to 21 days.
  • Hypoplastic left heart syndrome (HLHS) accounts for approximately 1 to 2 percent of all CHD. With this syndrome the left side of the heart is smaller than normal. The structures affected can include the left ventricle, the mitral and aortic valve, as well as the aorta. These babies are dependent on the fetal circulation remaining intact after delivery. For oxygenated blood to reach the body the right ventricle pumps the blood into the pulmonary artery and some of this blood passes through the PDA (patent ductus arteriosus) into the aorta and eventually to the body. This defect is incompatible with life without surgical interventions. The surgical intervention that is performed is palliation. The left ventricle is the major muscle of the heart and if it has not developed in the fetus it cannot be developed later or after birth. The palliation is aimed at using the right ventricle to act as the major muscle of the heart. This is a complicated surgical repair that is done in stages. The first surgery is usually done in the neonatal period and requires heart-lung bypass. The babies can then go home with monitoring to await the next surgery. The second intervention is done at approximately 3 to 4 months of age. The final planned surgical intervention is at approximately 2 years of age. Postoperative hospital stay averages five to seven days for the initial intervention.

How is congenital heart disease treated?

Most congenital heart disease is treated in the neonatal period of life with a surgical intervention to correct or palliate (provide relief but does not correct). Some surgeries are more extensive and complicated than others. Some have a much more complicated pre- and post- operative course than others. The goal of treatment is to get the heart functioning at a level capable of providing the body with oxygenated blood. The brain and all internal organs need to be perfused with blood that has an adequate supply of oxygen to maintain well-being.

What about after surgery?

After surgery your baby will go to the pediatric intensive care unit (PICU). All babies that have any type of heart surgery go there. This keeps all cardiac surgical patients in one place. The nurses in the PICU are very comfortable caring for postoperative cardiac patients. Some cardiac surgical patients will have their chests left open postoperatively to allow more room for the heart. The chest is covered so you cannot see the heart or inside your baby's chest. The manipulation and time on the heart-lung bypass machine can cause swelling so that the heart needs more room in the chest than normal. Also, if there are any complications that require another surgical procedure there is an easy access. Closure will occur several days postoperatively in the PICU. The baby does not have to go back to the operating room.

Depending on the type of surgery performed, your baby could have several internal monitoring lines such as the umbilical artery catheter (UAC), medication drips given via a central line placed while the baby was in surgery, umbilical venous catheter (UVC) as well as peripheral intravenous lines (PIV), and other tubes such as chest tube, breathing tube (ETT), NG/OG tube, urinary catheter, and cranial oximetry.

  • Internal monitoring lines can be placed into almost any area of the heart to measure pressures. An explanation about these lines and the reason for their use will be provided for you by the staff caring for your baby. Don't be afraid to ask questions more than one time. It is a lot of information to take in and will require repeated explanations to get a better understanding of why and how each line is used. Many of these lines are very temporary for postoperative monitoring.
  • Umbilical artery catheter (UAC) was probably placed shortly after birth. These are special IV lines that go into one of the arteries of the umbilical cord. Fluids and medication can be given through this line. The blood pressure can be monitored and blood can be removed for blood tests through this line.
  • Umbilical venous catheter (UVC) was probably placed shortly after birth. This is a special IV line that goes into the vein in the umbilical cord. Fluids and medication can be given through this line. The central venous pressure can be monitored through this line.
    Peripheral intravenous is a regular IV (like the one you may have had for delivery). Fluids and medication can be given through this line.
  • Endotracheal tube (ETT) is a special breathing tube placed through the vocal cords and into the windpipe. This tube is then used with the ventilator to assist the baby with breathing and delivery of oxygen. This tube often times will trigger increased production of secretions. To clear the secretions the nurses will suction the tube. Because the tube goes through the vocal cords the baby is not able to make any sounds. They may appear to be crying but you will not hear anything. Once the tube is removed, the baby may sound hoarse but his or her normal voice return very quickly.
  • Nasal gastric/oral gastric are tubes that are passed either through the mouth (oral) or nose (nasal) and into the stomach (gastric). They are left open to drain. This keeps the stomach empty of air or secretions. Eventually the same type of tube may be used to feed your baby.
  • Chest tube(s) are placed to assist with reinflating the lungs after surgery. Suction is applied to the tubes, which creates a vacuum in the chest which allows the lungs to reinflate. They also drain any fluids that may accumulate in the chest.
  • Urinary catheter is a special tube passed into the baby's bladder to drain the urine. The urine is collected in a drainage system. This way we can accurately measure and assess how well the kidneys are making urine, and we can test the urine for a variety of things to ensure the baby's well-being.
  • Cranial oximetry measures blood perfusion to the head.

Some of the medication drips (medication is given IV by a continuous infusion) your baby may be on can include:

  • Dopamine and/or dobutamine are used to maintain an adequate blood pressure.
  • Epinephrine is used to treat low blood pressure.
  • Captopril is used to treat high blood pressure.
  • Nitroprusside (Nipride) is used to lower blood pressure.
  • Phenoxybenzamine is used to control or treat high blood pressure.
  • Milrinone is used to produce vasodilation (dilated blood vessels) by relaxing vascular smooth muscles.
  • Neuromuscular blocking agent is used to keep the baby from moving about and/or "fighting" the ventilator. They are unable to move any muscles and require mechanical ventilation while on this medication
  • Fentanyl is used for pain relief and sedation.

Will I be able to help care for my baby after surgery?

Yes! Please ask your baby's nurse about ways to interact with and care for your baby.

If you had planned on breast-feeding your baby, you can begin to pump your breasts and freeze the breast milk while you are still in the hospital. A lactation consultant can assist in answering your questions. Your milk will be frozen and stored in the NICU until your baby is ready for it. The NICU has breast pumps and private rooms available to you when you are visiting. You can bring in pictures, small toys, booties, and blankets for your baby while he/she is in the NICU. After surgery your baby will be admitted to the PICU. The PICU also has the equipment and personnel available to help you with whatever concerns you may have.

The Fetal Concerns Center includes a tour of the NICU and PICU before your baby is born. This helps you get a better idea of where your baby will go after delivery. You will see the facilities available to you as you learn to care for your baby while he/she is still in the hospital.

When can my baby go home?

Your baby can go home when he/she is eating enough to maintain weight, grow and gain weight. For some, eating is the issue that will lengthen their stay in the hospital. Because these babies are not allowed to eat initially and may have been given negative oral stimulation such as intubation, some may have a difficult time learning to eat by mouth. Others have difficulty with oral feeding because it takes a lot of effort for a baby to eat. They may be exerting more energy eating than they are able to take in by mouth because of their compromised heart function. If this does become what is keeping your baby in the hospital he/she may need to have another surgical procedure to place a gastrostomy tube (G-tube) through which formula or breast milk can be given. The G-tube can be used exclusively (meaning they do not eat at all by mouth) or it can be used to supplement what the baby is taking by mouth.

The heart will be functioning well enough to provide his/her body with oxygenated blood. If the surgery was palliative, the next surgery will be tentatively scheduled according to the average normal of what we've seen in the past with similar type heart defects.

Your baby may go home on medication. Some of the most common ones to go home on include:

  • ASA (aspirin) is used as a blood thinner or to prevent clots.
  • Digoxin is a medication that strengthens the hearts contractions.
  • Lasix assists the body with getting rid of fluids.

Before you go home you will be instructed on any medicine your baby needs to take, the dosage, how to give it and any side effects to watch for.

What is my baby's long-term prognosis?

The long-term prognosis for babies with heart defects is getting better all the time. New surgical techniques are being developed or older techniques are being perfected. Home monitoring has provided a means for parents to assess well-being at home more accurately. New medications that help keep babies hearts functioning more effectively are being used.