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SICK NEWBORN HEALTH
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| Common Abnormalities in Development |
Heart Problems
General Information
Atrial Septal Defect (ASD)
Hypoplastic Left Heart
Patent Ductus Arteriosus
Transposition of the Aorta
Ventricular Septal Defect (VSD)
Additional Congenital Heart Disease Information
How does my doctor know that my baby has a heart problem?
There are many ways a baby tells us there may be something wrong with the heart. A baby may exhibit one or all of the following:
- The doctor hears a murmur when listening to the heart. A murmur is the sound the blood makes as it travels through the heart. Some murmurs are normal and others tell us there may be a problem with how the heart was formed.
- The baby is "blue"(cyanotic). This means the blood that is leaving the heart is not carrying a normal amount of oxygen. There can be several reasons for a baby to be blue. One common reason is that there is a problem with how the heart was formed. Another common reason is that there is a problem with the lungs.
- The heart is beating with an abnormal rhythm or speed. The heart has a very distinct pattern and speed by which it beats. If pattern is abnormal it can mean that there is something wrong with the heart. If the heart is beating to fast or to slow it can also mean that there is a problem. The doctor is able to determine the pattern and speed by listening with a stethoscope or by using special equipment.
- The baby is breathing fast. A baby that breathes fast can have a heart problem. Unfortunately, this is not a very specific sign as there are a number of other things that can cause a baby to breathe fast.
What types of tests are used to evaluate the heart?
- One common test is called an electrocardiogram (ECG, or EKG). This allows the doctor to obtain an electrical picture of your baby's heart. Small stickers are attached to the baby's chest. Wires are then clipped to each of these stickers. The wires are connected to a portable machine that takes the electrical picture. This test may not be done on very small premature infants because the chest is small and the skin is fragile.
- Another common test is an echocardiogram (ECHO). This is an ultrasound of the baby's heart. You may have had an ultrasound during pregnancy to look at the baby. An echocardiogram allows the doctor to determine if the heart was formed normally and if it is working well.
- Another test that may be used to find out more about the baby's heart is a cardiac catherization. This test is done once a problem has been found. It allows the doctor to obtain detailed information about the heart. The baby is taken to a special room that is germ free for this test. The baby is given medicine so that s/he sleeps during the procedure. Long flexible tubes (catheters) are placed into the blood vessels in the groin (area between the body and legs). The catheters, once inside the blood vessel, can then be directed to the heart. Inside the heart the catheters allow the doctors to make detailed measurements about how well the heart is working. The catheters also allow the doctors to inject dye and take pictures of the heart. This test does carry some risk. Your physician can discuss this with you.
What does heart failure mean?
It means the baby's heart is unable to keep up with the needs of the body. When the heart is not formed normally it has to work harder and faster. This takes a lot of energy. The heart is unable to keep up with the job that it has been designed to do. Heart failure does not mean that the heart has "failed" or has stopped beating as the term suggests. You will likely hear this term used by the health care team caring for your baby, so it is important to understand this term.
What are some of the drugs that my baby may get?
Digoxin - Digoxin is a drug that helps the heart muscle contract (squeeze) better. It is typically given twice a day. It can be a dangerous drug if given in excess and should be kept out of reach of other children at home. If the baby vomits (spits up) the drug after is given you should contact your physician before repeating the dose.
Lasix - Lasix is a drug that helps to remove extra water from the body. When the heart is not working well the body collects water. Lasix will cause your baby to urinate in larger volumes and more frequently.
Potassium - Potassium is an important substance in the body. Potassium is often given to a baby that is on lasix. Lasix causes potassium to be excreted from the body. Babies are given potassium to help replace these loses.
Aldactone - Aldactone is another medicine that helps remove water from the body. It also prevents potassium from being lost. This drug is frequently used with lasix.
Captopril - Captopril is a drug that lowers blood pressure. This helps the heart to work better. Captopril is often given three times a day. Captopril keeps the body from losing potassium and most of the time should not be used with potassium.
Prostaglandin - Prostaglandin is a drug that is given directly into the vein. It keeps the ductus arteriosus (the blood vessel between the pulmonary artery and the aorta) open. This is very important to do in some heart problems. This medicine can cause fever. It can also cause a baby to stop breathing. Many babies on this medicine need to have help with their breathing.
Dopamine - Dopamine is a drug that is given directly into the vein. It helps the heart to contract (squeeze) better and keeps the blood pressure higher.
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I have been told my baby has an atrial septal defect. What does this mean?
An atrial septal defect (ASD) means that there is a hole between the upper two chambers of the heart (the right and left atrium). When the baby is inside the mother there MUST be a hole (known as the foramen ovale) between the upper two chambers for the baby to grow and develop normally. This hole usually closes shortly after the baby is born. If this hole does not close and remains large it is called an atrial septal defect.
It is very common for premature infants to have delayed closure of the normal hole. You may hear your doctor use the term patent foramen ovale (PFO) to describe this area. In most cases, this hole does not cause any problem. The hole is usually found by an echocardiogram (ultrasound of the heart).
What is the treatment for an atrial septal defect?
It depends on the size and location of the hole. Atrial septal defects usually do not cause any problems during the first few years of life and may close on their own. If they are large, usually they are closed before child enters school. This often is done with open heart surgery, however, new ways of closing these holes without surgery are being developed.
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I have been told my baby has hypoplastic left heart syndrome. What does this mean?
This is a very serious heart condition. The left side of the heart pumps blood to the brain and body and is very important. In this disease the left side of the heart has failed to develop normally. These babies have only one pumping chamber (the right ventricle) that must perform the work of two. These babies can be very sick and will not live long without surgery.
What treatment choices are available for babies with hypoplastic left heart syndrome?
There are three choices:
- The first is to perform surgery to allow the heart to function with only one pumping chamber. This is not easy to do and requires three operations over the first two years of life. You should ask your cardiologist and heart surgeon for additional details and what the experience with this procedure at your hospital.
- The second is for the baby to have a heart transplant. Much has been learned about infant heart transplantation over the last several years and this can be a very successful procedure. The outcome will depend on how long the infant has to wait for an organ (heart) to become available. Unfortunately, infant hearts are in great demand and waits can be long. Once again you should talk with your cardiologist and cardiac surgeon regarding their experience with infant heart transplantation.
- The third option is for the baby to receive only supportive care. Most babies will die, usually within the first month of life without treatment. At one time this was chosen by many families. Today, with better surgery and advances in heart transplants, this is chosen less often. Again, you should discuss this with your cardiologist.
Additional information on Hypoplastic Left Heart can be found at Family Village
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What if the ductus arteriosus is open at the time my baby goes home?
If the ductus arteriosus has not closed by the time your baby goes home, it will need to be followed by the baby's doctor. Frequently the PDA will close on its own within several months after birth. Your child's doctor may refer you to a pediatric cardiologist (a doctor who cares for children with heart problems).
What happens if the PDA does not close?
If your baby is not growing well, or there is evidence that the PDA is making your baby sick, the PDA will probably need to be closed. However, if the baby is growing well and thriving, then nothing is done until approximately one year of age.
How is the PDA closed?
There are two common ways that a PDA is closed:
- Surgical closure. A small 1-2 inch incision is made in the area underneath the baby's armpit. The surgeon is able to see the PDA through the incision and close it with a metal clip or suture material.
- Coil occlusion. One or more small coils (small curly pieces of metal) are placed into the PDA by a cardiologist during a procedure known as a cardiac catheterization. The catheterization is done in a room very much like an operating room. Long flexible tubes (known as catheters) enter the body through blood vessels in the groin. The catheters are then moved by the cardiologist to the area of the PDA where the coils are placed.
Your child's doctor and you will choose the method that is best for your baby. The decision is made based on the size of your baby and any other associated medical problems.
What are the benefits of surgical closure?
The surgery is very quick and easy. There is little blood loss and hospital stay is short. When a PDA is closed in this manner there is a very high likelihood that it will stay closed for life.
What are the disadvantages of surgical closure?
There is the risk of anesthesia (the medicine used to make you sleep) while the operation is being done. In addition, your baby will have a scar, though usually small.
What are the benefits of coil occlusion?
There is no scar from the procedure. The baby usually leaves the hospital the next day and the recovery time is very quick. The procedure is done while the baby is in a light sleep, but general anesthesia is not usually used.
What are the disadvantages of coil occlusion?
In a small number of cases the PDA will not be completely closed. A small leak may remain. In addition, there is radiation exposure (though small) during the procedure. It is rare, but there is a chance that during the procedure the coils would not stay in the PDA, but become lodged somewhere else in the body. If this happens the baby may require additional surgery to remove the coils.
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I have been told my child has transposition of the great arteries. What does this mean?
In the normal heart the left ventricle (left pumping chamber) is connected to the aorta (blood vessel to the body) and the right ventricle (right pumping chamber) is connected to the pulmonary artery (blood vessel to the lungs). In a baby that has transposition of the great arteries (TGA) this relationship is altered. In transposition of the great arteries the left ventricle (left pumping chamber) is connected to the pulmonary artery (blood vessel to the lungs) and the right ventricle (right pumping chamber) is connected to the aorta (blood vessel to the body).
What tests are needed to diagnose this problem?
In many cases the baby will be noted to be blue (cyanotic) after it is born. The cardiologist will do an echocardiogram (ultrasound of the heart) and the problem can usually be easily seen.
How is transpostion of the great arteries treated?
There is only one way that this problem can be treated and that is by surgery. The cardiologist will recommend a surgeon who is an expert in repairing baby hearts (pediatric cardiovascular surgeon). During the surgery the aorta (blood vessel to the body) will be switched with the pulmonary artery (blood vessel to the lungs) restoring them to their original positions. This operation is known as the arterial switch procedure.
What will happen to my baby before the surgery?
Your baby will likely be started on a medicine called prostaglandin. Prostaglandin is a medicine that helps to keep open a blood vessel known as the ductus arteriosus. The ductus arteriosus connects the pulmonary artery to the aorta. It allows the red and blue blood to mix. It is very important for this blood vessel to stay open. Prostaglandin has several known side effects. One of the most important is that it can cause the baby to stop breathing. The doctor may need to place the baby on a machine to help with breathing.
Your baby may need a cardiac catheterization. This is preformed by a cardiologist. During this procedure your baby will be taken to a room free of germs. Long flexible tubes (catheters) are placed in the blood vessels in the groin (area between the trunk and legs). These catheters are then directed to the heart. Important measurements can be made about how well the heart is working. Many babies with transposititon of the great arteries will need to have a large hole created between the upper two chambers of the heart (the right and left atrium). This hole will allow the blue and red blood to mix better. This hole is made using a balloon catheter (a catheter with an inflatable balloon on the end). This proceedure is referred to a balloon atrial septostomy.
What is the long term outcome for babies with transpostition of the great arteries?
If your baby does well during the operation and recovers from surgery without any problems s/he should be able to lead a normal life. The baby will always need to see a cardiologist to insure that no futher problems develop.
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What is a ventricular septal defect?
A ventricular septal defect is a hole between the bottom two pumping chambers (the right and left ventricle) of the heart. You may hear your health care provider refer to this hole using the term VSD.
Is this a serious problem?
Ventricular septal defects can be a serious problem. It depends on the location and the size of the hole. Small holes may close on their own. Surgery may be necessary to close larger holes.
How is this problem diagnosed?
A ventricular septal defect often causes a murmur that is heard when the doctor listens to the heart. A murmur is a sound made by the blood as it passes through the heart. When the doctor hears this sound, s/he may ask a cardiologist (heart doctor) to evaluate your baby. The cardiologist may order tests to help determine the cause of this sound.
How is a ventricular septal defect treated?
The treatment is determined by the size and location of the hole. Small holes often close on their own in the first two years of life. Large holes will require close follow-up by a pediatric heart specialist (cardiologist). The cardiologist may need to put your baby on heart medicine to allow your baby's heart to work better. The cardiologist may also recommend that your baby have the hole closed by surgery.
If my baby needs to have surgery what does this involve?
Ventricular septal defects are closed by a surgeon who specializes in operating on the hearts of children (pediatric thoracic cardiovascular surgeon). The chest is opened by cutting through the breast bone. The heart needs to be opened for the hole to be repaired. In order to do this, the child needs to be placed on cardiopulmonary bypass (a complex procedure where the movement of blood through the body is supported by a mechanical pump). Once the heart is opened the hole is patched using a thick fabric. The heart is then returned to action and the mechanical pump is removed. The chest is closed and the baby is taken back to the intensive care unit. This surgery usually takes several hours.
I have been told my baby requires subacute bacterial endocarditis (SBE) prophylaxis. What does this mean?
There is an increased risk of developing a heart infection in people with some types of heart problems. These people are told to take one dose of antibiotic (usually a large dose) before procedures where bacteria can get into the blood stream. One common procedure that allows bacteria to enter the blood stream is dental cleaning by a dental assistant or dentist (not daily brushing of the teeth). These infections are rare but can be serious if they occur.
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American Heart Association
Cincinatti Children's Hospital Heart Center
Congenital Heart Information Network
The Congenital Heart Disease Resource Page
Pediheart
Texas Heart Institute
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