E.g., 09/2017
E.g., 09/2017

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Our congenital heart defect story: Part 3


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Every Friday during National Congenital Heart Defects Awareness Month each member of Hayes’ family will share their story and how they have been impacted by his diagnosis. 

My youngest brother, Hayes, was diagnosed with a heart defect when he was born two years ago. His heart defect was called Transposition of the Greater Artery, or TGA.

I found out on June 19, the day Hayes was born. The morning of, my mom and stepdad left very early, about 5 a.m., to go to the hospital to get ready for the C-section. Later on that day, after Hayes was born, my grandmother had just put my younger brother, Barrett, to sleep. My Aunt Emily, who was also staying with us, offered to stay at the house with Barrett and my other brother Greyson while Mimi and I went to the hospital to meet Hayes. This was going to be my first time seeing Hayes. Oh, I was so excited! When we finally arrived at the hospital and got into my mom’s room, Hayes was not in the room as he was taken out and having his vitals checked. My mom and I spent the next ten minutes discussing what it will be like back at home, where she will now have four kids. We agreed that things were going to be interesting!

IMG_8565 (1)After what had felt like eternity, the nurse finally came back, only without Hayes. I remember Mimi and I being asked to leave the room, and when we were allowed back in I was asked to step out. When Mimi came out of the room, all I recall her saying was “let’s head home.” I didn't know what was happening, but I was scared.

I later found out that Hayes had TGA, and that he was taken to Texas Children’s Hospital by the amazing Kangaroo Crew. He spent about two days in the NICU, a total of about a week and half in the CVICU and had open heart surgery at seven days old. His surgery was performed by Dr. Fraser, whom I will never be able to thank enough. While my parents were at Texas Children’s with Hayes for two weeks, my Aunt Emily went home and it was just Mimi and me with both little boys, Barrett and Greyson. It was hard to be home and not really know what was happening with my new brother. I got to talk to my mom and she sent me pictures of Hayes in the hospital, but I didn't get to see him again until I came to the hospital the day before his surgery. Me, my brothers and grandmother took turns visiting with Hayes. They told us what to expect when we saw him, but all of the tubes and wires were still a very frightening thing to see all over my sweet new baby brother.

The Ronald McDonald House was also a very important part of this journey that I will never forget. With the Ronald McDonald House, my parents never had to worry about a place to stay and all of the people there were amazingly kind and just all around awesome. The Ronald McDonald House was also helpful because whenever we came to visit my parents and Hayes, we always hung out in the family room on the 17th floor.

Hayes’ diagnosis most definitely impacted me. I heard all of these stories and I always thought that it could never happen to me. I will always be thankful for Texas Children’s, and will never forget how they saved my baby brother's life.

Austin, sister of patient