Congenital Heart Defects are the #1 birth defect worldwide.

Congenital Heart Defects are the #1 cause of birth defect related deaths worldwide.

About 1 out of every 100 babies are born each year with some type of Congenital Heart Defect in the United States
(approx. 40,000/year).

Nine out of every 1,000 babies born in the US are born with a congenital heart abnormality.

One third of these babies require intervention to prevent death in the first year of life.

85 to 90 percent of CHDs have no
known causes.

5 to 6 percent are related to
chromosome abnormality.

3 to 5 percent are related to
single gene defects.

2 percent are related to
environmental factors.

Approximately 1.3 million people living in the US today were born with a congenital heart defect, and at least half of these individuals are under age 25.

Although some babies will be diagnosed during gestation or at birth, sometimes the diagnosis is not made until days, weeks, months, or even years after. In some cases, CHD is not detected until adolescence or adulthood

It is a proven fact that the earlier CHD is detected and treated, it is more likely the affected child will survive and have less long term health complications

The first operation to correct a congenital heart defect was performed in 1938 by surgeon, Robert Gross, MD in Boston, MA.

CHD Facts information found at
Boston Children's Hospital and It's My Heart

 1. “Parachute” mitral valve – a malformation of the mitral valve, the valve between the left atrium and left ventricle, in which the two valve leaflets are attached to one papillary muscle rather than two and remain close together. This results in a narrowing of the valve opening (mitral stenosis), obstructing blood flow and causing the valve to resemble a parachute in appearance.

2. Patent Ductus Arteriosus (PDA)- ​Blood flow is different in the fetus and most blood bypasses the lungs. An extra blood vessel (passageway) called the ductus arteriosus (DA) allows blood from the right side of the heart to flow to the aorta, one of the largest arteries, and back out into the body without going through the lungs.

After the baby is born and begins to breathe, the flow of blood changes to include the lungs. The pulmonary artery opens to carry blood from the right side of the heart to the lungs, and the DA is supposed to close.

Patent ductus arteriosus (PDA) is a condition in which the ductus arteriosus doesn't close. Patent means "open." Sometimes the open passageway is wide (a large PDA) and sometimes it is narrow (a small PDA). A large PDA is dangerous because blood flow to the lungs isn't as controlled as it should be, leading to problems with the lungs and heart.

3. Ventricular Septal Defect (VSD) – A ventricular septal defect (VSD) is an opening in the tissue (the septum) between the heart's lower chambers (the ventricles). A VSD is one of the defects that is referred to as "a hole in the heart."

When the VSD is large, the heart may have to pump harder to deliver enough oxygen to the body. Patients with a small VSD usually do not have any symptoms

4. Coarctation of the aorta – a narrowing or constriction of the aorta, the large vessel that carries blood from the heart to the body tissues

These defects all affect the left side of the heart and interfere with the flow of blood into and out of the left ventricle, which pumps oxygen-rich blood through the aorta to the body.

5. Hypoplastic Left Heart   The left ventricle is underdeveloped. It is too small. This means the heart will have to work harder and won’t last as long. Sometimes the valves entering or leaving the left ventricle are also too small.

Shone's Complex information found at Cove Point FoundationChildren's Hospital of PhiladelphiaHeart Baby Home
Shone’s Complex (also known as Shone’s Syndrome, Disorder, or Anomaly) is a rare congenital heart disease that restricts blood flow both in and out of the heart’s left ventricle. The classic Shone's consists of four defects, which are depicted in the illustration to the right. These are (1) parachute mitral valve, (2) supravalvar mitral membrane, (3) subaortic stenosis, and (4) coarctation of the aorta. But there are also incomplete forms of the disease in which only two or three of these defects are present, and cases in which other congenital heart defects also occur (e.g. patent ductus arteriosus, interrupted aortic arch, bicuspid aortic valve, atrial septal defect, ventricular septal defect).

Confused yet? Essentially, Tyson has a handful of heart defects that, when occurring together, they decide to call Shone's. Really what you need to know are Tyson's specific defects, which we have listed here.
The treatment for Shone's Complex varies from case to case, and in Tyson's, the doctors decided that he would need a series of surgeries that would essentially make his heart able to function with just the right side. This means he has a single ventricle heart. These surgeries are mostly done is Hypoplastic Left Heart cases so most of the information out there is associated with this diagnosis. 

Aug. 22, 2011 - Norwood Procedure with Sano Modification
The Norwood Procedure is an open heart surgery that makes the right ventricle of the heart the main pumping chamber for blood flow to the body. The aorta is made larger to increase blood flow to the body and a connection is made to enable the blood traveling through the aorta towards the body to "shunt" through this connection and flow into the pulmonary artery to receive oxygen. This may be accomplished with a modified Blalock-Taussig shunt, which is a small tube placed between the aorta and the pulmonary arteries or by using the Sano modification procedure, in which a homograft (tissue) conduit is placed between the right ventricle and the pulmonary arteries. Tyson received the Sano shunt. The surgeons essentially rerouted blood flow to the lungs... its pretty cool! For a great diagram click HERE

Aug. 23, 2011 - Norwood Revision
​As Tyson's condition worsened after the initial surgery, he was sent back to the operating room to revise some of the valves and sutures. This was his second open heart surgery in two days. Tyson was just 6 days old.

Dec. 13, 2011 - G-Tube Placement and Nissen Fundoplication
Many children with heart conditions and especially ones with rough hospital courses will end up having some form of a feeding disorder. Tyson was no exception and required a feeding tube to safely maintain proper nutrition. During the surgery for the tube placement, Tyson also underwent a Nissen Fundoplication in which the surgeon wrapped the upper part of his stomach around the lower portion of his esophagus. This is supposed to prevent reflux by not allowing anything to flow up out of the stomach. It doesn't always work perfectly, though, and in Tyson's case, he was throwing up just five weeks after the surgery. We could have it redone, but the risk of another surgery (Tyson cannot have this done laparoscopily) is just too high for us, and as long as we can maintain his weight gain, this should not be a problem. He currently has a GJ tube, which feeds directly into his jejunum. 

Jan. 18, 2012 - Bi-Direction Glenn Procedure
In the Glenn Procedure, the blood from the head, neck and upper body is directed to the pulmonary artery through the superior vena cava (SVC). This allows the blood to flow into the lungs for oxygen. The SVC is removed from the heart and connected end-to-side to the right pulmonary artery (RPA), which is in continuity with the left pulmonary artery (LPA). For a diagram to explain further, click HERE.

Future Surgeries
Best case scenario, Tyson will only need one more surgery which is the Fontan Procedure. This will most likely be done in the fall of 2013. For further explanation and a great diagram, click HERE, and scroll down to the Fontan description.

Information in this section found at Severin BrennyCongenital Heart Institute of TexasChildren's Hospital of PhiladelphiaFeeding Tube Awareness Foundation, and Cleveland Clinic.

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