Reagan's Story

Reagan is the daughter of a dear friend who I met my freshman year at DBU. We have remained friends through our first teaching jobs, celebrating each other getting married, and enjoying our pregnancies together..but not always at the same time. We have shared much laughter and many tears through the ups and downs of life. Reagan has recently come home from her 3rd heart surgery and is at Dell Children's in Austin. Read her story below...



My name is Reagan Grace Williams. I was born on Feb. 15, 2007 with a congenital heart defect known as Tetralogy of Fallot with Pulmonary Atresia and MAPCA's. I also have DiGeorge Syndrome which not only affects my heart but my immune system as well. I am only one in about 350 babies a year that are born with all this.

When I was born I spent 10 days in the NICU before the docs let my parents, Rod & Jennifer, take me home to meet my big brother Nolan.

At the age of 2 months, I suffered two embollic strokes while at home. My mom had to call 911 & I was taken to the nearest ER and then taken by helicopter to Dell Children's Hospital in Austin, TX. I spent 12 days in the PICU and then was able to return home.

When I was 4 months old, I traveled to Lucile Packard Children's Hospital at Stanford in Palo Alto, CA for my first open heart surgery. Dr. Hanley (the top surgeon in the world for this type of corrective surgery) performed a unifocalization of my vessels. I spent 6 weeks in the hospital recovering. When it was time for me to go home, I was only able to spend 2 days at home before being taken back to the hospital and once again riding the helicopter to Dell Children's. I then spent another 8 weeks in the hospital for a staph infection in my sternum & bloodstream. I had to go to surgery where they re-opened my sternum and dug out the infection that had attacked my sternum & then a wound v.a.c. was placed over my sternum to promote healing. I received i.v. antibiotics for 6 weeks through a PICC line while in the hospital. At the end of this hospitalization, due to G.I. issues that started after my first heart surgery, I had another surgery to get a g-tube & nissen fundoplication. I have fed from the g-tube ever since.

In Jan. 2008 I was due to go back to LPCH for my second heart surgery. Three days before boarding the plane my parents had me in the ER and I was admitted to the PICU with RSV. I spent 10 days there and then returned home.

In Feb. 2008, I celebrated my first birthday. 6 days later I flew to LPCH in California for my second heart surgery where Dr. Hanley performed a revision of my unifocalization and replaced my shunt with a larger one. I spent 8 weeks in the hospital recovering before I was able to return back home to Texas.

Once home, I was able to enjoy the comforts of home for almost a month before I returned to Dell Children's with pneumonia. The pneumonia kept me in the hospital for 4 weeks but I have been home now since June 16 with my family. This has been the longest I've ever been at home & managed to stay out of the hospital. Yippee! Unfortunately though, I am due to return to LPCH in October for my 3rd heart surgery.

My parents properly named me as my middle name is "Grace" for it is only by the grace of God that my family and I have survived all this! It has been a long journey and we still have more to go but God has always carried us through the good & the bad times. We thank you- our family, friends & even strangers, for your support along the way!