Caleb's Story




In recognition of American Heart Month, members from the Speak Now for Kids community will be sharing their personal experiences of being a parent of a child with a congenital heart defect (CHD).

Today we will hear from Leslie Sams, mother to Caleb. Special thanks to Conquering CHD for submitting Caleb's story.

On March 8, 2010, with joy my husband and I welcomed our first child, Caleb. We knew we were having a boy, but what we did not know that our son would be born with a Congenital Heart Defect (CHD), called transposition of the great arteries. He had not been diagnosed prenatally. Three days after his birth, Caleb had open heart surgery to help his heart properly circulate blood through his body. To say we were overwhelmed is an understatement. We were both thrilled and scared when, at only 11 days old, we brought Caleb home from the hospital. We soon got into a routine with his care and developed a new “normal” that included recording all his feedings, weight gain and follow-up cardiology appointments. 

Not fully understanding the longevity of Caleb's condition, when the bills started coming in, we just paid them. We had insurance through my husband's employer and assumed there wasn't any financial help available to us. Yet, at some point we realized Caleb was not "fixed". His appointments and therefore the medical bills would not stop. In addition to his medical needs, Caleb developed some developmental delays common in children with CHD due to several risk factors including low oxygen at birth, time spent on a bypass as a newborn, and not being allowed to do tummy time for six weeks after his surgery. So in addition to his medical appointments throughout the first two years of life, Caleb also started receiving speech, occupational and physical therapies.

Even with financial aid from the hospital, the medical bills were overwhelming. In time, our insurance informed us that Caleb had maxed out on his allotted therapy appointments for the year. When we learned Caleb qualified for our state's Medicaid Waiver, it was like a huge weight was lifted from our shoulders. We knew we could continue taking Caleb to his therapy appointments that were necessary for him to grow and develop into the best possible Caleb he could be. Medicaid helped alleviate the burden these medical bills had put on our family and for that we are grateful.

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