You are here
Kinley’s heart defect was identified when she was two days old. We had no previous warning. She was transferred to the nearest NICU and additional testing was performed. She was diagnosed with Interrupted Aortic Arch Type B, hypoplastic aortic valve and VSD and underwent her first open heart surgery when she was just 16 days old. Kinley’s recovery from this surgery was complicated and required a 10 week hospital stay. During which time Kinley suffered from airway and feeding issues resulting in placement of a g-tube and an infection leading to a PICC line that we would later come home with. Due to multiple complications, the doctors suspected some sort of chromosome disorder and ordered additional blood test. It was confirmed that Kinley had 22Q11.2 Deletion Syndrome. We were told that Kinley would probably never walk or talk and that she would not be very intelligent.
Most days were filled with some sort of appointments, whether it was doctor, labs, or therapy. Due to her 22Q11.2 Deletion Syndrome, Kinley has several issues. She is or was followed by cardiology, endocrinology, pulmonology, infectious disease, GI, genetics, neurology, orthopedic, ophthalmology, ENT, immunology, audiology, hematology, allergist and pediatric surgery. She has needed services that included feeding/speech therapy, occupational therapy, developmental therapy, and physical therapy. For these specialists and services travel is required to multiple cities. To date, Kinley has had 7 surgeries, including 2 Open Heart Surgeries, G-Tube place & removed, Ear Tubes, Tonsillectomy, and Adenoidectomy.
Kinley is now 5 years old and is doing remarkably well. She loves school and does very well. Her favorite things to do are reading, coloring, playing, swimming, riding her bike, and dancing. She’s come a very long way from her early diagnosis. Our days are still filled with appointments, but with less providers and lots of speech therapy.
Kinley’s main issue at this age is speech. She was recently diagnosed with velopharyngeal insufficiency and will need a pharyngeal flap surgery in the near future.
We cope by knowing that the Lord is walking alongside us all the way. We could not do this by ourselves, we frequently lean on friends and family for support. After all, it takes a village, right? We seek pastoral counseling often and it’s very important to find support groups.
Kinley is a fighter, a survivor, a miracle. Our hope for our daughter is that she will live full and abundant life. We hope she dances in the rain, sings at the top of her lungs, and laughs till her belly hurts.