Awareness Key To Rare Childhood Disease

Dear Editor,

I want to let people know about a disease called Truncus Arteriosus.  Because this disorder is so rare, its unheard of. It occurs in less than 1 out of 10,000 births.

My grandson was diagnosed early in my daughter’s pregnancy. They couldn’t tell her what to expect or anything because it is so rare. She was only told to be at Duke hospital or in the general area whenever she started dilating.  She was given a due date of May 14, 2023. The baby was born on April 28, 2023, and at 6 days old he was having a 10-hour surgery.  Due to new medical technology, he was blessed to receive a new revolutionary partial heart transplant.

Unfortunately, many children who had this rare defect before him did not have the opportunity to have this surgery. Technology is changing and Duke medical doctors are finding a way to try and save babies. We are thankful for the surgery, but more mothers should be aware of life saving techniques, so when they hear during the second or third month of their ultrasound, “the baby may die or it’s a 70/30 chance survival rate,” they can have hope and know that there are studies being done.

Our little one is still being monitored and probably will be on heart meds for a while until studies show how the medicine helps or hurts. Currently, our little one is still in the study phase and even though the meds he is on are supposed to help regulate his heart rate, the medicine has a downfall, which is it makes him susceptibility to infection, only because his little body has not built up an immune system.

Have a blessed day.

Dee Fulton

 

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