Once upon a time, in a commonplace town, in a commonplace house, on a commonplace morning, a miracle happened. There, on top of clean sheets and Downy treated blankets, an angel was born. She was a glorious, chubby little mound of black hair and pink skin and her grandmother likened her to a china doll. That is where our story begins. We didn't know she would be so perfect. We didn't know we would love her so much. We didn't know she would die before her 17th birthday. We didn't know about her heart defect - a Coarctation of the Aorta. Please join me as we dive headfirst into a story that just didn't get a happy ending.

Throughout her years, Chynna was plagued with an odd assortment of medical issues that became more obscure as she grew. Her hands and feet were often cold. She had leg cramps. The skin on the bottom of her feet would peel oddly. Her fingernails were always flaky and broke easily. She had headaches. She was always a sweaty child, but she was also an adorably chubby little girl. Doctors would say that she was slightly above the average weight for her age. It was never anything they wanted us to worry over. She was a heavy breather, but that, too, was written off to a case of baby fat that she was expected to outgrow. Then came the barking cough and difficulty catching her breath. The family doctor diagnosed her with excercise-induced asthma and she was given an inhaler to use. I never felt the inhaler worked, but she felt more comfortable having it on hand during dance practices.

The Spring of her 8th grade year, Chynna successfully tried out for her high school drill team. One year later, the whole team would travel to Disneyworld to perform. Chynna and I made that trip, but she wasn't dancing due to a mysterious knee injury. Her knee was so weak, she spent the trip in a wheelchair. Before the trip and afterward, a new family doctor diagnosed the knee issue as "Osgood-Schlatter Disease." As we were never comfortable with that diagnosis, we sought the opinion of an orthopedic doctor upon our return from Florida. This person felt her knee issue was a muscle problem and she spent 6 weeks in physical therapy. It worked and she was doing well until the following Spring when she passed out backstage during her dance team's dress rehearsal for their Spring show. It was literally over 90 degrees back-stage on this 4th run-through in pantyhose and the full costume. They had run out of bottled water to give the girls, and several of the dancers complained of a woozy, lightheaded feeling. Chynna didn't think she truly passed out - just sort of fell out. I brought her home and made sure she was well hydrated. We didn't give it another thought...until it happened again this year...during a class at school where she passed out from a sitting position. The school nurse took her blood pressure in both arms and found an alarming difference in the numbers. This led to another family doctor visit, which led to a referral to a pediatric cardiologist, which led to a pediatric heart surgeon, which led to a surgery, which, finally, led to her death.

You see, by the time we knew what we were dealing with, it was too late. There was 16 3/4 years of damage to her little heart. We didn't know it at the time, but she didn't have a chance. Oddly enough, Chynna passed a physical to dance, for either a private team or a school team, every year of her life from the age of 3, including the one she had two weeks before she passed out at school that last time. She had just successfully tried out for varsity mascot. That's 13 years of school physicals where this defect was never noticed. She had four emergency room visits for common childhood ailments (broken bones, etc) in her almost 17 years. Four instances of triage and this defect was never noticed. We are Chynna's parents. We are not medical professionals. Yet, we feel most of her symptoms can be linked to diminished blood flow to her extremities due to her too narrow, pinched aorta. We also feel that, even if only once in her lifetime, someone had done a four-point blood pressure check in both her arms and legs, we might not be sitting here right now telling you how much we miss our daughter.

This is very much a parental rights issue. You can have your child's blood pressure taken in both arms. It doesn't cost extra. It is your right as a parent. It is your child's life.