Aug 24, 2010 Latest post:
Aug 27, 2019
Hello friends and family. Be sure to read the latest journal entries, view the photo gallery, and drop us a line in the guestbook. Oh, I forgot, please feel free to make some comments on the beautiful pictures. Please be sure to sign the guestbook. We love seeing who is checking-in on our amazing heart hero. Thanks!
Hello Family and Friends,
My name is Ta'Ziyah Nayel Butler born on August 24, 2010 at Holy Cross Hospital in Montgomery County Maryland. Dr. Butler delivered me and she was so nice. My birth weight was 6 pounds 11 ounces and 20 1/2 inches long. I was diagnosed in my mother's womb during the 1st trimester as having a rare congenital heart defect. My Nana and Mommy were told that something was wrong with my heart. My mommy had numerous doctor visits for an Echocardiogram to get a clear diagnosis. She visited a Cardiologist at Holy Cross that also works at Children's National Medical Center several times in Silver Spring office to monitor my heart defect. The Cardiologist's name is Dr. Mary Donofrio; she is the Director of the fetal heart program and Co-Director of the Echocardiography program at Children's. My Mom and Nana said that she is an amazing individual as well as a professional who knows her profession very well. She sat down with them one day to explain what her diagnosis was and that I had "Hypoplastic Left Heart Syndrome." My left side of my heart and aorta was severely underdeveloped. I will have multiple surgeries. There is no cure for HLHS. It was the first time my mom and nana heard of HLHS. She provided them with an accurate diagnosis and treatment options. She educated them by using the diagram of the heart showing all 4 chambers. My nana cried as she was sitting across from her and she felt confused with so many unanswered questions. After they left the hospital, my Nana started researching HLHS to get a better understanding of this severe heart defect. They are so grateful for having Dr. Donofrio in there lives and receiving an education in this area that was not familiar to them.
I was transported on 8/24/2010 for my 1st open heart surgery at Children's National Medical Center on 8/27, with two more to follow in the near future. I had my 2nd open heart surgery on January 27, 2011 (Glenn procedure). When I can walk and talk, I will thank Dr. Richard Jonas, Chief Cardiac Surgery who performed both of my open-heart surgeries. He is one of the worlds-renowned pediatric cardiac surgeons and one of his specialties is congenital heart disease.
Today, I am not able to take a bottle all day by mouth. This is why I have a G-tube inserted on the left side of my stomach to give me all of my feedings/calories and medications.Thank you Nana for keeping everyone updated through this website. Remember to cherish every moment you have with your love ones because you can never get them back.
God Bless all who have been through tough circumstances or know someone who is facing a difficult situation. So, this is how our journey began.