Nathaniel S.
Arizona
Birthdate: July 28, 2009
Diagnosis: Hypoplastic Right Heart Syndrome
Nathaniel's Story
Nathaniel was born with Hypoplastic Right Heart Syndrome and Pulmonary Atresia. His Pulmonary valve was completely closed obstructing the flow of blood from his heart to his lungs. We were told he would need a series of 3 open-heart surgeries and a heart transplant at around 20 years old. Nathaniel was 7 days old when he had his first catherization in preparation for his upcoming surgery. At 10 days old he had the 1st surgery, in which a shunt was placed. The shunt became kinked and caused a blood clot. He had another heart cath to fix the shunt. He spent 6 weeks in the NICU before he finally came home.
At 5 months Nathaniel underwent his 3rd heart cath to prepare for his next surgery. The cath revelaed that the right side of his heart had grown and was actually working!! They decided to remove the shunt and place a conduit from a donor baby. We were told that conduit would need replaced at about 3 years old. When Nathaniel turned turned 3 he underwent another cath to balloon his conduit and give him more time to grow before his next open-heart surgery. At 4 1/2 his cardiologist gave the OK to wait another 6 months before his next check up.
For the past couple years we have continued to work on his weight gain and growth as well as keeping him healthy. He has continued to do well enough that his doctors were still advising us to wait longer before doing the next surgery that will replace the conduit. The reasoning is the bigger he is the larger gauge conduit can be placed. If the surgery is done too soon, it will have to be done again in his teens. If they wait until a 20 to 22-gauge conduit can be placed, it should last until he needs a heart transplant as an adult. He has continued to have periodic caths and tests.
On August 14th Nathaniel will be admitted to the hospital and will be undergoing a sedated MRI of his heart. We found out recently via EKG and Echo that the right ventricle and atrium are enlarged. The doctors aren't sure what exactly is causing this, but they know that the tricuspid leak can be part of it. This MRI will tell us how big the enlargement is, what’s causing it, and the actual size of his physiology for his upcoming conduit placement. We are slowly approaching another open-heart surgery. We know it’s coming.
"We had Nathaniel's Birthday Party today and he LOVES his quilt. He just kept saying WOW at all the characters and thought it was huge and soft! He was excited that there were squares from Arizona on there. Plus Pennsylvania where he was born. It's beautiful and he's already got it on his bed. Thank you again so much. You guys are amazing."
