Holden was born on May 4, 2006 with many congenital heart defects. He had his first open heart surgery to repair a coarctation of the aorta, ASD, & VSD when he was 1 mo old. He had another open heart surgery when we was 18 months old. This one was an effort to prolong the function of his bicuspid, stenotic aortic valve. He has had five cardiac caths and is now 15 years old. We have learned to take one day at a time and enjoy each day to the fullest! Holden is such a blessing to us!
Holden had a very rough start. He was five weeks early and had a preliminary diagnosis of Pulmonary Hypertension. He was on near-maximum support at four days of age when they diagnosed him with an Aorta Coarctation. (A HUGE narrowing of the aorta as it exits the heart. . . thus, no blood to lower extremities). His kidneys shut down and his blood pressure was extremely abnormal. Some days later they found a large hole inbetween his lower two chambers in his heart. (VSD - Ventrical Septal Defect.) A few days later they found a problem with the function of his mitral valve. At 26 days of age he went into congestive heart failure. On June 2, 2006, at 28 days of age Dr. Gandhi did open-heart surgery on Holden. Dr. Gandhi then discovered another hole in between the two top heart chambers (ASD) and repaired it. He also fully repaired the Coarc and partially repaired the VSD. They did some a repair to the mitral valve and will just watch it. He was at home and (somewhat :-)) happy one week after extensive open-heart surgery! It was just amazing. God is Good!
Holden visited the cardiologist on October 12, 2007. They did an echocardiogram that showed some malfunctioning of his heart due to his VSD. More tests will be done on October 22, 2007.
The tests on October 22 at Children's just confirmed what the previous echo showed. His aortic valve is not functioning properly because of the pressure of the blood leaking through the VSD. Holden will have another open-heart surgery on November 13th, 2007 at Children's Hospital. Dr. Gandhi will again be performing the surgery.
We learned through a serious of appointments on Monday, November 12th, 2007 that Holden's aortic valve is deformed. It's a bicuspic valve instead of a tricuspic. (It is missing a leaflet (flap) and is leaking blood.) He has a VSD (hole inbetween two lower chambers) that is shunting blood (mixing back and forth between two chambers). His VSD is located near the valve and may be causing the aortic valve to deteriorate at a faster rate than if the VSD were closed. So he had his VSD repaired on November 13th 2007 in hopes that it helps his aortic valve. Only time will tell. We pray that he did not go through this surgery for nothing. God answers prayers and we pray for healing of his aortic valve. He came home three days after surgery! God is still in the miracle business!
We learned on November 30th that prior to surgery his heart was enlarged. We're hoping that the surgery brought his heart back down to normal size. We also learned that the deformed Aortic Valve also has stenosis (narrowing) in it. So there is still much to pray about.
On December 14, 2007, Holden's cardiologist informed us that his VSD repair in November did not improve his heart condition at all. Holden still has a VSD, so no changes in his heart performance. Although, WE see improvements in his condition. He is eating more, sleeping less, and has more energy. It's now just a wait, watch, and see situation... and pray hard!
On May 26, 2011 Holden had his first cardiac cath. They were hoping to balloon his aorta open where his repair was made in 2006. The balloon dilation will not work where his defect is and he is too small to place a stent by cath at this time... so will watch and wait. His blood pressure in his right arm is 120/65 and 60/30 in his left...
On February 26, 2014 Holden had another cardiac cath. They placed a stent in his aortic arch. He is like a new boy with this procedure. He has felt amazing and had more energy than he's ever had.
On August 4, 2014 Holden had the stent in his aorta dilated again. The procedure went very smoothly.
On January 16, 2017 Hold had another heart catheterization. The first stent that they had placed in his aorta had fractured. They placed another stent inside of it and dilated it some more.
For more details on Holden's story visit the JOURNAL. Thanks for visiting his website!
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