Natalie J.

Natalie was born with a congenital heart defect called an ASD, basically a hole in her heart, and a cleft in her mitral valve.  She had her first open heart surgery at age 2 and her second at age 6. Because of her poor heart function she developed liver cirrhosis. Between age 6 and 10 she progressively went down hill. First she needed a feeding tube to keep up with her extra nutritional needs, then she needed a wheelchair just to get around outside of our house. The final thing to tell us it was time for a transplant was Natalie needing to be on oxygen just to get across the room. Her doctors told us she needed a very rare combined heart and liver transplant. Our home state hospital doesn’t do liver transplants, much less a combination of heart and liver. So we found ourselves in Cincinnati, OH. Natalie and I had to live their full time while she waited on her miracle while her dad and little brother stayed home in Arkansas. Natalie was on the transplant list for 88 days, 2 months of which were spent in ICU. She received her gift of life on August 1, 2020. Recovery from transplants was incredibly difficult, but she is so strong. Natalie was able to leave the hospital 2 months after transplant, but we had to continue to stay next door to the hospital for a year after transplant. One night, about 6 months after her transplants, Natalie started having stroke like symptoms. An ambulance rushed her to the ER where we learned that she was having mini strokes. They told us Natalie developed another rare disease where the carotid artery in her brain shrank and she was getting very poor blood flow. She would need brain surgery on each side of her head to restore blood flow. She had many mini strokes before she had her first brain surgery and and then her second surgery a month later. Again recovery was very difficult after both surgeries, but she is strong and recovered very well! About a month after her second brain surgery we found out that Natalie’s dad needed to have an emergency triple bypass on his heart. Natalie’s doctors gave us the ok to make an emergency trip home to be there for his surgery. It has been 2 years since Natalie’s heart and liver transplants and a 1.5 years since her brain surgeries. She has had a few minor complications since being home but she is doing remarkably well. She turned 15 this year and is a Freshman in high school!  While Natalie is doing very well she still has many appointments and procedures that happen several times through the year every year. We transferred her care closer to home but we still travel 5 hours for all of her treatments. We are so grateful for Miracle Travel Works and the support they have shown our family. They help us with things like hotel rooms, gas, food, and even a plane ride. These expenses take a huge toll on our family, but it isn’t something that can be avoided. I’m not sure that Natalie could have gotten the amazing care that she needed across the country from our home without the support of MTW.



Posted on

December 16, 2022