It was early July when Kayle and Richard discovered the exciting news that they were to expect a new addition to their family. From the beginning, everything seemed perfect: the timing, the genetic screening results, her heartbeat, her growth. However, at Eden's 20 week anatomy scan, Eden squirmed and wriggled so much the sonographer recommended coming back in a couple of weeks to finish off the scan. At 25 weeks, Eden was a bit more cooperative, but the doctor said he had some concerns regarding Eden's heart. On November 18th, Kayle went in for a fetal echocardiogram where she and Richard were told that Eden had a rare congenital heart defect and were encouraged to consider further testing to assess for chromosomal anomalies. After several more appointments and several more weeks of waiting, Kayle and Richard received news that Eden's heart defect (DORV) was likely the result of an 11q chromosomal micro-deletion called Jacobsen Syndrome which often includes a host of other medical complications (such as Paris-Trousseau Syndrome) as well as lifelong disabilities. Not only is Jacobsen Syndrome, like many other chromosomal-related syndromes, complex and varied, but it is extremely rare occurring in approximately 1 in 100,000 births.
In spite of all the challenges Kayle and Richard will face as they care for Eden, they are so grateful for their little girl and trust in God's goodness and provision. Even before they had learned of Eden's medical condition, God had laid the name "Eden Christine" upon their hearts as just the right name for their daughter. "Eden" not only translates from the Hebrew to "place of delight," but also refers to the Garden of Eden, a place where God communed and cared for His beloved creation. Little Eden is certainly Kayle and Richard's delight. Even more, Kayle and Richard believe that God is with them and their daughter as they embark on this new journey as parents. "Christine" means "Christ follower." Just as the Christ was the "anointed one" through whom the glory of the Father is revealed, Kayle and Richard know in their hearts that Eden has also been uniquely chosen by God to bring Him glory.
Kayle and Richard are so thankful for the love, prayer, and support of their family and friends. Through Eden's Caring Bridge page, Kayle and Richard will work to post regular updates for their loved ones near and far as well as share with you ways that you can support their family.
