Congenital Heart Defects (CHD)

Where do I start this story......I have blogged many times about my daughter's heart condition. What is has in really rare but even more rare that she has it but doesn't have downs with it like so many do. When you hear about another family going through the same stuff you went through regarding their children's health your heart just aches for them. When Jimmy Kimmel was talking about his son being born and finding out within minutes that something was wrong with their brand new baby it's totally gut wrenching. We found out at 3 days old that something was wrong and they didn't know what so we were referred to a cardiologist  where she first had a echo and then we met with the peds cardiologist team that confirmed what everyone thought, she had AVSD and would need open heart surgery. At this time affordable health care didn't exist yet and Obama Care was a new thing. I didn't worry though because I had insurance that I paid for every month so baby was covered, I just worried about our portion of the hospital bills we'd have to pay. We made pre arrangements with the hospital for the birthing costs so I started making payments on an estimated $15,000 birthing cost with C-section.

Well about 2 weeks after birth my insurance cut her off, said that I never notified them of my pregnancy which I did, and they denied any and all coverage for my baby. So here I am 2 weeks into a life long journey of navigating the life of a chronically ill child. I have littereally no idea on what I'm going to do. I seriously loose my shit. I planned on returning to work, I worked up until a week before I had my daughter. I planned on going back 4/4/11 but that really just wouldn't work. My daughter was born 2/1/11, on 4/4/11 the day I was supposed to return to work, I was at Doernbecher Children's Hospital waiting for my daughter to go have her repair surgery. Instead of having this surgery that was going to "fix" her she ended up coding, she stopped breathing, some of the scariest moments of my life is watching doctors, nurses and anyone who had a spare hand attend to her lifeless body. Instead of her going back for surgery, she was placed in the PICU on life support where we waited for her body to heal itself and figure out what happened. We waited helplessly while brilliant minds tried to figure out what was going on, we got nothing. No one knew why her body gave up besides she was just too tired to go on. I am so thankful this happened in the hospital and not in the car on the way up. I am so thankful that she received the help she needed right away.

Thankfully before her surgery happened we were able to get her insurance stuff figured out but that was a hard thing to navigate. While navigating  all the insurance stuff I learned that because of Obama Care and the ACA my child would never be turned down for health care for a condition she was born with. She would always have good insurance and would always have the care that she needed. This was a godsend to me and my family. We would never have to choose between taking care of our baby's medical needs and paying rent and bills. We would never have to worry about not being able to afford an expensive medication and believe me for a while she was on 5 or 6 and many of them were $1,000+ a month for.

I worked full time since my oldest was 5 weeks old all the way until my youngest was born, I am not someone trying got get something for nothing. I worked until I just couldn't anymore because I needed to take care of my child. Please, Please, Please remember this when your voting on they type of coverage the ACA provides.