MadisonOn October 28, 2005, my daughter, Madison Paige, was born. She was four pounds and four ounces and 17 inches long.
When I was 23 weeks pregnant, we found out that Madison had Hypoplastic Left Heart Syndrome. My doctor had sent me for a level two sonogram and it was during this visit that they detected something was wrong with her heart. After a week of visits to the doctor and many more sonograms, it was determined that she had HLHS.
At that time our options were explained to us. The doctors told us we could terminate the pregnancy, which was the furthest thing from our minds and just not an option for us. All we wanted was some hope and a chance for her. So, the plan was for me to deliver at Columbia Presbyterian. However, I gave birth eight weeks early at my local hospital. During a non-stress test, the doctor noticed her heart seriously decelerating. I was given an emergency c-section and Madison was transported over to Columbia.
My husband never left her side. He slept in a chair for the seven days that she was alive. I had to stay at my hospital for four days to recover from my emergency c-section. I went right over to see her the same night I was released from the hospital. I got to spend another three days with her. On November 3rd, she had her first surgery. I'll never forget her tiny little body being wheeled into that huge operating room. She had Dr. Q at Columbia for her surgeon. She spent five hours in surgery, however, her heart had other things wrong with it. Her pulmonary veins were not draining correctly and the hole between the two chambers of her heart had closed. Both of these factors and her prematurity had complicated the surgery. Dr. Q tried two different ways with the Norwood procedure.
We watched her breath her last few breaths of life and I got to hold her one last time. She was so beautiful on the outside - she just got cheated on the inside. Our hopes and dreams came crashing down around us and life has not been the same. I think of her day and night and wonder what might have been. I prayed and had so much hope. The odds were just not in her favor. However, if I had to do it all over again, I would. Even though I know the outcome. She touched our lives and filled our head and our hearts with a lifetime of love and memories.
Madison Paige: Like a star in the sky, you will shine forever.
Story by Madison's mom, Jen - New York