In honor of Heart Month, we reached out to Laura Benner Diamantoni to learn more about congenital heart disease and her very personal story.
Laura pledged Fall 90
Thank you, Laura, for sharing...
At 24 weeks pregnant with twins, we went for a level two ultrasound. The biggest thing we were worried about was not finding out the sex of the babies. As I was lying there half naked, the doctor begins by saying baby A looks fine but baby B has some heart abnormalities. The next hour was a blur. They said due to the nature of the apparent large hole in his heart and what looks like dual outlet right ventrical, we needed to do an amnio right away to see if we were dealing with genetic or other issues. We would also need to decide where to deliver the babies, because Lancaster hospitals would not touch us with these challenges.
Steve, who is a family doc in town, did all the research on who was the best pediatric cardio thorasic surgeon. Thank goodness we did not even need to travel out of state, and the babies were born at Hershey Medical Center.
The first three weeks of Gus's life were spent at Hershey, since his first surgery was at three days old, and second at six days old. We lived at The Ronald McDonald House with our newborn Will and 5 year old Jackson. It was quite a bad time. We were finally sent home with Gus on a NJ tube due to the fact he would not feed, and he was not strong enough yet for his open heart surgery. After 7 grueling months of in and out of the hospital Gus had his first open heat surgery. He did well, but at 18 months of age had to once again undergo another open heart operation.
Gus is quite a little trooper. We take things 6 months at a time, just holding our breath until his next cardiologist appointment. It seems once they go in and fix one thing with his heat, it negatively affects another area. Gus is a sweet, happy little guy going to a special preschool where he is able to receive speech, occupational and physical therapies. He has global delays, and does not speak yet. If you ask his twin Will, he would tell you Gus talks all the time.
Gus was named as the spokesperson for The American Heat Walk here in Lancaster, and has been involved in The Childrens Miracle Network to raise awareness for congenital heart disease. He just turned three and loves music. His formal name is Gust after his grandfather, but his friends call him Gus.
To learn more about these organizations and see how you can help, visit:
Ronald McDonald House
Children's Miracle Network
Friday February 6th is the American Heart Association "NATIONAL WEAR RED DAY"... so sport your "cardinal", Pi girls... and show your support for the American Heart Assoc!
...And say a prayer for Gus, Laura, and their family...
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