Kid-Inspired Acts of Kindness
Our 6-year-old daughter Claire’s personal journey at Riley inspired her to make a difference. Claire made a five dollar donation to Riley Children’s Foundation and asked her friends, classmates and family to match her gift. Her efforts raised $813 for the Riley Heart Center! My husband Mark and I decided to match this donation, and we ended up donating $1,626 to Riley. As Claire says, “This project taught me that one act of kindness can multiply into many acts of kindness that really make a difference for other heart kids like me!”
Claire has been a Riley kid from the very beginning of her life. As all parents are when they find out they are expecting their first child, we were very excited and anxious for the journey ahead. At 22 weeks’ gestation, we found out that we were having a little girl, and we decided to name her Claire Lucille. During the next few weeks, after numerous doctors’ appointments, ultrasounds and finally an echo-cardiogram, we found out our little girl’s heart was not forming as it should. She had a congenital heart defect known as Truncus Arteriosis, and she would have to undergo surgery shortly after birth. Inherent in all new parents is the fear of the unknown when expecting their first child, however, words cannot describe the emotions and anxiety that we felt as we tried to cope with the thought that our unborn child already had a mountain to climb, one of which she may not make it over.
A birth plan was put in place soon after, and my labor was induced on May 12, 2010 at IU Medical Center in Indianapolis. Claire was born the following day, with our immediate families present, as was a priest that gave Claire her baptismal rights upon birth, in anticipation of the journey ahead. At two hours of age, Claire was taken from us and transferred to the NICU at Riley Hospital for Children. Once assessed by the cardiology team, due to the severity of Claire’s condition, it was determined that she would undergo her surgery at twelve days of age. After a successful surgery, numerous sleepless nights, a month in the hospital and many tears, our family came home to Evansville for the first time on June 14, 2010.
A month later, we returned to Riley for a cardiac catheterization that would hopefully even out the pressures in Claire’s heart. Over the course of the coming months, while we attempted to begin life as a normal family, hidden by the scars from our initial experience at her birth, we began to notice through irregular breathing patterns, color, etc. that our little girl was experiencing problems. Our suspicions were confirmed. The cardiac catheterization did not have the long-term desired results and we were again headed to Riley for an additional surgery. On October 7, 2010, Claire underwent her second successful open heart surgery and again we returned home upon her recovery.
Claire turned 5 before an additional cath procedure with angioplasty was performed in July 2015. As parents we will never forget the bravery she showed that day, and are thankful the procedure achieved the desired results, providing additional time before her next open heart surgery. Claire will turn 7 years old this May and is flying through first grade at Resurrection Catholic School. She has continued to receive good reports since the cath procedure, though the most recent visit in November 2016 showed her conduit is becoming calcified, meaning her next open heart surgery is on the horizon.
The reason our hearts belong to Riley is simple: Claire’s entire care team gave her the gift of life, thereby giving us the gift of being her parents. Claire has impacted our lives in ways we can’t even explain. To see the pride she has in being a Riley kid is heartwarming!
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