Thursday, December 17, 2009

Addison's Diagnosis and Prognosis

St Jude Hospital – Fullerton, CA

Addison was diagnosed with a VSD, ventricular septal defect (a hole in the wall that separates the right and left ventricles of the heart) while she was still in utero. We were told that the VSD was large and would not close naturally and that our child would need to have surgery between 4-6 months old. The day after she was born, we were told that in addition to her VSD, she also had coarctation of the aorta (a narrowing of her aorta). Addison was immediately transferred from our birthing hospital -- St. Jude to Childrens Hospital Orange County (CHOC) since the coarc was serious and would have to be repaired immediately.

Children’s Hospital Orange County [CHOC]

After Addison was admitted to CHOC, the diagnosis got even worse. The coarctation itself was not the serious problem now, it was the VSD. Her tricuspid valve was straddling the VSD hole and could not be fixed without damaging the muscles that control the valve. The issue with moving the valve is that it would most likely leak and need constant surgery to fix. The surgeons at CHOC felt the difficulty to perform a full repair on Addison’s heart was on a scale of 9/10. Instead, they recommended the Fontan procedure, a 3 part surgery that would require Addison to receive open-heart surgery as a newborn, again at 3-6 months, and finally between 2-3 years old. They would basically make her perfectly working two chamber heart into one chamber and cut her open two more times.

At that point we were in despair. How could things turn from bad to worse? The chief of Cardiology offered us another solution that the surgeons were reluctant about. He told us about Dr. Reddy up in Stanford, CA that could perform a full repair on Addison-- VSD and coarc fixed in one shot.

The surgeons really pushed for us to take the single chamber solution stating that it was the more conservative way to go. We prayed and we looked to the Lord for guidance. At this time, my husband and I decided to go with the conservative solution.

Stanford Children’s Hospital [LPCH] the legend of Dr. Reddy

Almost simultaneously, Dr. Reddy contacted us and believed with near certainty-- 95-98% chance that he could do a full repair. If the repair did not work during surgery, he would fall back to a single chamber banding method. We were touched by the Holy Spirit because we threw our initial conservatism out the window and trusted Dr. Reddy, I man we had never met or heard of before, with our daughters medical care with a 5 minute conversation.

We haphazardly made our way as a family to Stanford’s Lucile Packard Children’s Hospital (LPCH). The surgery was successful but Addi went into complete heart block (complete AV block) means that the heart's electrical signal doesn't pass properly from the upper to the lower chambers. Her electric conduction system was damaged from the surgery and a she required a pacemaker at this time. There is a 1%-4% chance that the pacemaker will not be needed later in life. At this point the doctors are saying the chances are slim of her heart block resolving on its own.

Fountain Valley, California
We were finally able to take Addi home after 5 LONG weeks. We had to teach her to feed and help her regain strength and reach her "milestones". Amazingly enough, Addi has been pretty advanced with them. She sat in a bumbo at 2 months, started smiling and laughing. She could even bear weight on her legs. Addi has always been a curious creature. You will always see her observing and enjoying the world around her.

As of today, the doctor claims that Addi has SEVERE mitral valve leakage (regurgitation). He thinks that we will see Dr. Reddy again-- he is saying a 90% chance. He also said that he is hardly wrong... but we will see, God loves to confuse the wise. =)

Related Terms and Definitions

Coarctation of the aorta is a congenital (present at birth) heart defect involving a narrowing of the aorta. The aorta is the large artery that carries oxygen-rich (red) blood from the left ventricle to the body. It is shaped like a candy cane, with the first section moving up towards the head (ascending aorta), then curving in a C-shape as smaller arteries that are attached to it carry blood to the head and arms (aortic arch). After the curve, the aorta becomes straight again, and moves downward towards the abdomen, carrying blood to the lower part of the body (descending aorta).

Ventricular septal defect (VSD), a congenital (present at birth) defect, is an opening in the ventricular septum, or dividing wall between the two lower chambers of the heart known as the right and left ventricles.

Normally, oxygen-poor (blue) blood returns to the right atrium from the body, travels to the right ventricle, then is pumped into the lungs where it receives oxygen. Oxygen-rich (red) blood returns to the left atrium from the lungs, passes into the left ventricle, then is pumped out to the body through the aorta.

Mitral valve regurgitation means that one of the valves in your heart—the mitral valve—is letting blood leak backward into the heart.  Heart valves work like one-way gates, helping blood flow in one direction between heart chambers or in and out of the heart. The mitral valve is on the left side of your heart. It lets blood flow from the upper to lower heart chamber.

Heart block- When this occurs, an independent pacemaker in the lower chambers takes over. The ventricles can contract and pump blood, but at a slower rate than that of the atrial pacemaker.
These impulses are called functional or ventricular scope beats. They're usually very slow and can't generate the signals needed to maintain full functioning of the heart muscle. On the ECG, there's no normal relationship between the P and the QRS waves.
 Heart block may result from an injury to the electrical conduction system during heart surgery.

The VSD and the Coarch were fixed by Addi's surgeon Dr. Reddy at Stanford. See link

Monday, November 23, 2009

Addison's cardiologist told us that there was a 90% chance that she will be going back to surgery. I want to proclaim that by the mercy and grace of GOD, it will not happen. I know nothing is too big for our God and I want this blog to serve as a witness to the miracles that our God can perform. This will be our testimony as we travel down this road.

Jer 32:27 "I am the Lord, the God of all man kind. Is anything too hard for me?"