Friday, July 14, 2006

Waggoner family heart story by heart mom Amy Waggoner. Also check out Brock's website at www.caringbridge.org/al/brock.

Brock was born as an emergency C-Section. His heart rate had started dropping during labor.
However, there were no problems detected when he was born. At Brock's four month old check up, a heart murmur was detected. It was really significant in sound. It was not heard on our previous visit to the pediatrician one month prior. The pediatrician believed he had an ASD or a VSD. He scheduled Brock to see a cardiologist. The first available appointment was 3 1/2 months away. I went home that day very upset. I couldn't wait that long to find out what was wrong with my babies heart. It just so happens that my husband works in the recovery room at UAB Hospital where Brock was to see the cardiologist.
Barry recovers the patients when they are done with there angiograms. So, he knows the cardiologist and all of the nursing staff. They agreed to see Brock the next week. Brock had an echocardiogram done.
The cardiologist believed that Brock's heart muscle was thickened and it was causing the pressures in the right ventricle to be high. We were told he had Right Ventricular Hypertrophy. They ordered some blood work to be done and scheduled and angiogram. Brock's blood work came back showing he was very anemic. His red blood cells were very low and abnormal in size and shape. Anesthesia was uncomfortable to put Brock asleep. They put Brock on iron drops and a high iron diet for two weeks. We retested his blood then and there was no change. The cardiologist did another echocardiogram and his ventricular pressures were getting higher. He demanded Anesthesia to put Brock to sleep for the angiogram. We were told they would put a stent into the pulmonary valve and blow up a balloon to make the space wider to relieve the pressures inside of the ventricle. The procedure was unsuccessful. They were not able to even feed the stent in. We were told he would have to have open heart surgery to shave some of the heart muscle back.
Two days later, on September 11, 2003, Brock had open heart surgery. The surgeon came out of surgery after about 45 minutes to tell us they found a huge tumor filling up 2/3 of the right ventricle. His prognosis would be poor. The surgeon removed as much of the tumor as possible without damaging the walls of the heart. In the CICU we were told it looked like a Rhabdosarcoma and the prognosis was very poor. After testing the tumor and sending it off to different labs, Brock was diagnosed as having an Inflammatory Myofibroblastic Tumor. We were told to enjoy the time we had with him. There are only a couple of known cases to ever occur in the heart. There was no treatment protocol. Brock was released from the hospital 2 days later. 3 1/2 weeks later we started seeing the tumor growing on the echocardiogram. This time we knew it wasn't thick heart muscle. We knew it was the tumor. Because it was an inflammatory tumor, the Oncologist started Brock on some steroids hoping it would attack the tumor. However, the tumor continued to rapidly grow. Brock had his second open heart surgery on November 6, 2003 at seven months old.
Again, the surgeon removed as much tumor as possible and also had to remove the pulmonary valve. He recommended us choosing to have a heart transplant.
Because of the steroids, it took Brock a little while longer to heal after this surgery. He was released from the hospital after 5 days. Brock started chemotherapy two weeks later. The chemotherapy was every week for 6 months and then every other week for 6 months. Brock had surgery on November 26, 2003 to put in a port-a-cath to receive the chemo injections. He had to travel to Louisiana to have a cardiac MRI done. He has also had countless numbers of CT Scans, echocardiograms, X-rays, and blood work done. Brock's tricuspid valve is not working now due to where the tumor was. As Brock has grown, his valve has weakened more and more. Brock will be having his third open heart surgery this fall at the age of 3 1/2 years old. He has severe Tricuspid Regurgitation. It is unknown whether they will be able to do a valve repair or if he will need a replacement. The valve replacement will require a mechanical valve. This will require Brock to be on blood thinners the rest of his life.
We leave it in God's hands. Brock has proved to be a true miracle and blessing to our family. He is a strong little boy.


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