Guaranteed Healthcare

My daughter Zoe was born in August of 2004. Prior to her birth, she was diagnosed with severe heart defects; hypoplastic right ventricle, pulmonary valve atresia, and Ebstein's Anomaly. These defects are known as "single ventricle defects" and are among the most complex group of heart defects known. At the time of her diagnosis, I was covered by my employer's group health plan, and at the urging of the children's hospital where she would be receiving treatment after birth, I applied for my states' SCHIP program - Denali KidCare. We were fortunate to be approved for this, covering her for her first year of life, and also for her first 2 heart surgeries. After she turned 1, we applied for and were approved for our state's TEFRA Medicaid waiver program, which covered her until the summer she turned 3 in 2007. At that time we were denied coverage for her because the state claimed she no longer met the "level of care" requirements. We obtained an attorney and appealed the decision multiple times, each time we were denied. At that time, I was working, however I was a contractor at a federal agency, and thus recieved only a "bare bones" limited benefit policy. I knew my daughter would need a 3rd surgery, and without Medicaid coverage, I knew we could not meet the copays and deductibles and out of pocket expenses associated with an open heart surgery, followed by a stay in the hospital of a couple weeks. I knew that those bills would be at least 100,000 to 200,000 dollars and my family could not afford it. I was pregnant again at the time, and tried again to apply for Denali Kidcare coverage. This time, I was approved but my daughter was not. I was forced to leave a job I loved and search for one with better health insurance. I was lucky to find it, and remained employed there until January of 2009 - this year. Each time I look for a job, I have to limit my choices due to my daughter's heart defects. Although she has had the surgeries necessary to enable her to live a relatively normal life, she requires a lifetime of cardiac care, in addition to the unknowns that lie ahead - she may need a heart transplant as an adult, she may not. No health insurance company will touch her with a 10 foot pole, and she is someone who has had medical issues thrust on her, not brought on by her own unhealthy lifestyle. She is utterly dependent on what I can do for her as a mom, and although I need to do things to better my life - like go back to school, our constant need for health care coverage means I need to always work. I can't just work anywhere; I have to make sure it has good insurance - with low deductibles and manageable copays. I'm tired of this - the health care system does not work for people like my daughter, and I wish more people could realize this.