It's Survivor Series Saturday featuring Shaun Nicosia

Today is Survivor Series Saturday and we bring you an incredibly touching and emotional story by Shaun Nicosia.

Shaun is part of Aortic Hope's social media team, contributor of the popular Wacky Wednesday's post and a board member with our partners, Think Aorta US.

"Hello, my name is Shaun Nicosia and I have the privilege of not only being a Social Media Administrator with Aortic Hope but also being on the board of Think Aorta US as their Social Media Director. This is my Survivor Story.

My story starts when I was twelve yrs old. I was diagnosed with a autoimmune/auto inflammatory disease called Ankylosing Spondylitis

(AS for short ) . This disease mostly affects the spine causing it to fuse together. It can also affect your eyes, lungs, joints, teeth, heart, and Aorta. At the time I was diagnosed we were told it was only the spine, joints, and eyes that it would be affected.

As I grew up, I mostly only had minor aches and eye infections. So AS wasn't a big thing to me. I was never even put on meds to treat it. Then when I was 35 and 8 mo pregnant my whole world changed.

I got up that morning, got dressed then was going to put my hair up, and when I raised my arms I felt the worst pain I have ever experienced.....ever! Like someone stabbed me in the neck and was dragging the knife down my back. I didn't know what happened or what was going on but I had the feeling I was going to die. I yelled for my son Shane, to call an ambulance. After about 10 min the ambulance nor the fire department was here yet. Now there is a fire station directly across the street from me. So Shane got mad and he ran over there and started banging on the door. Soon after they showed up and the ambulance right after.

So I'm finally on the way to the hospital when I heard them calling the hospital talking to them about me, and it wasn't nice. I told them about how bad the pain was and they were asking if I did something to hurt it, did I fall, was I in an accident lately and the answer was no to all of it. Basically they thought I was over reacting.

I get to the ER and I'm begging for anyone to help me. The nurses told me to calm down, and I would have to wait my turn and they wouldn't be getting pain meds because I was pregnant. They thought I was a drug seeker! Finally they came and told me they couldn't see me because I was too far along in my pregnancy, so they sent me to labor and delivery.

So I get there and I'm getting worse. They spent way to much time trying to get the baby's heart beat, I kept telling them that the baby was ok and that she was very active at the moment I asked them to please help me, something isn't right. No one believed me. The last thing I remember was shooting straight up in the bed and was hitting my chest in a panic and saying " I can't breathe ". I then fell back and went into cardiac arrest.

My son ran to the nurses station and told them what happened. He then was made to stay in the hall and he hears them call code blue. It took that happening for anyone to believe me!

I was rushed to the OR for an emergency c-section. While I was being prepped for surgery a cardiologist was doing an echo and looking at the heart. At the last minute he stopped them and told them that if they took the baby then we would both die. From there I was transferred to a better more equipped hospital. I went straight into surgery, emergency open heart and a c-section simultaneously and as they were cracking me open my aorta actually ruptured.

My family was told not to expect either of us to survive. My baby girl lost blood supply and they couldn't get her out fast enough and she died. I made it though but even after the surgery the family was told I only had a slim chance of surviving. There were a bunch of complications, organs trying to shut down, strokes, ect..ect... I was on life support for a month.

The thing that just kills me is that I never got to see my baby girl, didn't get to hold her, kiss her, smell her, or tell her goodbye. I got nothing. In my eyes that is what was tragic, not what I was going though physically. Children aren't supposed to die before their parents. It's just not fair.

For me this experience didn't have a happy ending. Yes I was saved, and I am grateful for that, but not a good outcome.

I am now doing whatever I can to make people more aware of this complication within ankylosing spondylitis and also to help with aortic awareness in general, and I will continue for as long as I possibly can."

On certain Saturdays during the month, we will share stories from survivors or caregivers within the Aortic community.

Be the shining star in someone's life by submitting your story of survival or caring for someone with Aortic disease.

We really want to know about the symptoms that were experienced and the process of diagnosis. We will be sharing your video or blog with Think Aorta US and use it as a tool to show Emergency Room Physicians and First Responders why it is so important to Think about the Aorta.

If you would be interested in sharing your story, complete this form.

The Aortic Hope Survivor Video and Blog Series form allows Aortic Hope to collect basic information for Survivor Series video and blog participants. This information will not be shared with anyone except the Aortic Hope administrative members. Videos and blogs submitted to Aortic Hope are used solely for the purpose of sharing with others; no monetary payment will be made.