Norah's Journey
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Five months ago my brother Tyler and his girlfriend Hailey found out they would be bringing a bundle of joy into the world; as most young couples would understand, this brought many emotions. However, after a few weeks of worrying about things like, "will we be good parents, are we established enough in our careers?” The excitement for their new daughter overtook any worry they momentarily felt. These two were ready for anything, but nothing prepared them for this. It wasn't until recently that they found out their baby girl, Norah Grace, would be born with a rare congenital heart defect known as, Pulmonary Atresia with Intact Ventricular Septum (PA-IVS) and Hypoplastic Right Heart Syndrome (HRHS.)
PA-IVS is a rare defect that affects 2 out of every 1,000 babies born. What does this mean? The chambers, valves, and related blood vessels on the right side of the heart are malformed. As the ventricle (a hollow part or cavity in an organ) has failed to grow and develop, the ventricle’s muscle structure is poor. Therefore additional problems are encountered as the heart attempts to pump blood to the pulmonary valve for transfer to the lungs.
On January 18th, Norah was born at Brigham Hospital and quickly transferred to Boston Children's Hospital (BCH)--50 miles away from their home. Sadly, the doctors found that Norah’s arteries are not healthy enough to undergo a series of open heart surgeries. The doctors have come to the conclusion that the best option for survival will be a heart transplant.
Until then, Norah will continue to be monitored by BCH and given prostaglandins through an IV to keep her ductus arteriosus open for blood flow. Due to these unexpected challenges, additional financial strain is placed on the new parents. Things such as uncovered medical expenses and the cost of commuting and lodging have become barriers while preparing to stay close to their daughter.
Any donations are very much appreciated, if not able to donate, please spread the word about Congenital Heart Disease in unborn children.
Thank you in advance!
#Norahstrong
"My heart beats for someone with a Congenital Heart Disorder"
PA-IVS is a rare defect that affects 2 out of every 1,000 babies born. What does this mean? The chambers, valves, and related blood vessels on the right side of the heart are malformed. As the ventricle (a hollow part or cavity in an organ) has failed to grow and develop, the ventricle’s muscle structure is poor. Therefore additional problems are encountered as the heart attempts to pump blood to the pulmonary valve for transfer to the lungs.
On January 18th, Norah was born at Brigham Hospital and quickly transferred to Boston Children's Hospital (BCH)--50 miles away from their home. Sadly, the doctors found that Norah’s arteries are not healthy enough to undergo a series of open heart surgeries. The doctors have come to the conclusion that the best option for survival will be a heart transplant.
Until then, Norah will continue to be monitored by BCH and given prostaglandins through an IV to keep her ductus arteriosus open for blood flow. Due to these unexpected challenges, additional financial strain is placed on the new parents. Things such as uncovered medical expenses and the cost of commuting and lodging have become barriers while preparing to stay close to their daughter.
Any donations are very much appreciated, if not able to donate, please spread the word about Congenital Heart Disease in unborn children.
Thank you in advance!
#Norahstrong
"My heart beats for someone with a Congenital Heart Disorder"
Organizer
Sydney Ormerod
Organizer
Tiverton, RI
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