Fund in Memory of Amber Stout

My name is Amber and I am 25 years old. I am happily married and have 2 kids. My son, Corbyn, is 3 and I have a 3 month old girl, Kinley. They bring such joy to my life and I love them dearly. I cannot imagine what my life would be like without them. That is why I think it is important to share my story.

We found out I was pregnant in May 2009. Before that time, I had few other health issues. Right before I knew I was pregnant, my doctor found some tumors in my neck on my thyroid. Besides that, I had the occasional bumps or bruises that any other active 20 year old might have. I was sitting in church that November and felt like I was going to pass out. I told my husband that I needed to go get a drink of water out in the hall. I remember making to the drinking fountain and then hitting the floor. I had passed out several times by the time my husband found me. We went to the hospital immediately since I was 7 months pregnant. Everything was normal. My OB decided it would be a good idea to start weekly monitoring at the hospital. 2 weeks into it, they decided to do an EKG as well as fetal monitoring. Usually, my husband and I would be there for less than an hour. This time was so different. We were there for 5 hours just waiting after the tests. We thought for sure something was wrong with the baby. When the on call doctor finally came in, she explained to us that I had a heart condition called "prolonged qt" and that they were taking me by ambulance to a better hospital. As you can imagine, our world flipped upside down. After I had my son in January 2010, I was started on Atenolol and had a loop recorder inserted. I also had genetic testing and was diagnosed with LQTS type 1. Over the next 3 years, I had multiple syncopes (fainting) but nothing would show up on my recorder. I did lots and lots of my own research and visited with my EP many times. My husband and I felt ready to have another child and asked a million questions of both my EP and OB. After we felt like we knew all the risks, we decided to have another child. I got a positive pregnancy test in November 2012! Everything started off great, but by the time I was 9 weeks, I was visiting the hospital often for IV fluids to help prevent me from passing out. My second trimester went better until I was about 24 week and was standing in my kitchen making sandwiches when I hit the floor with no warning. Up until that point, I had always felt the fainting coming on and could prepare myself by getting down. We made a trip to the hospital where my QT was at outrageous numbers I was told. I was taken by ambulance again to a better hospital. After visiting with my EP, we decided that the best plan of action was to implant an ICD. Now, I adore my doctor. She is one of the best. She is so experienced and I feel so lucky to be her patient, but we were headed into uncharted territory. Who has heard of a 6 1/2 month pregnant woman having surgery to place an ICD? My family and I prayed lots and thought it over very carefully and I went through with the surgery in April of 2013. It went smoothly and my little girl came out perfect in July. I get told all the time that how dare I get pregnant or that I am really selfish for wanting children. People judge me without understanding the whole story. We were not stupid for wanted to expand our family. Unexpected things happen and we learn to deal with them. I am so grateful for my life and my family. I avoid the things that put me at risk but I still live and love life. It doesn't stop me from taking my son to Disneyland and going on Tower of Terror. It doesn't stop me from playing catch in the yard or from getting involved with the youth at my church. People are frightened to be around me because I have something in my chest that can shock, but after they learn more about it, they can see the benefit too. It is part of who I am and I love that I have an "insurance policy" in my chest. I know it may sound weird, but I am grateful that I have LQTS. It has made my life better because every day I cherish what I have. I realize how short life can be and choose to make the best of it.