Miss Talia’s journey started at 20 weeks in utero when we went to the doctor to find out if she was a boy or a girl. We found out she was going to be a girl, along with the news that she possibly had a heart defect. Once confirmed, by an echo, Talia was diagnosed with Pulmonary Atresia. Over the next few weeks, we didn’t know what to expect, but we became a candidate for an experimental in-utero surgery to open the pulmonary valve in Boston. Talia was the 11th baby to have this procedure done. It was a successful surgery, however, her pulmonary valve started to close again and we weren’t sure what was going to happen. But, she was born pink, screaming and ready to fight this battle. Talia was confirmed to have HRHS – Hypoplastic Right Heart Syndrome.
Talia has had a total of 6 heart surgeries and 15 heart catheters in her life.
May 11, 2009 – 1st heart catheter was done to widen the blood flow going thru the pulmonary valve.
May 21, 2009 – 1st Operation – BT Shunt Operation.
August 17, 2009 – Emergency heart catheter done to open up the ASD hole that had closed.
September 9, 2009 – 3rd heart catheter done to check heart pressures and to see if it was time for her next surgery.
September 17, 2009 – 2nd Operation – Bi-Directional Glenn Operation.
December 27, 2009 – 3rd Operation – Tricuspid valve replaced and her Bi-Directional Glenn was reversed.
February 24, 2010 – Emergency heart catheter to put a stent in her Superior Vena Cava (SVC) vein.
May 13, 2010 – 4th operation – tricuspid valve replaced, a stent was taken out of her Superior Vena Cava (SVC) vein and replaced with a patch, and pulmonary valve replaced.
August 16, 2010 – 5th heart catheter – a stent was put in to her Superior Vena Cava (SVC) vein. It was starting to narrow again because of scar tissue.
August 18, 2010 – 5th heart surgery – They went in and replaced the tricuspid valve, fixed the Superior Vena Cava (SVC) vein and also fixed her pulmonary veins.
November 23, 2010 – 6th heart catheter – tricuspid valve replaced via catheter with a melody valve at Boston Childrens Hospital. She was the smallest person to ever have this done.
December 7, 2010 – 8th heart catheter – They put a stent in the pulmonary artery, widened the pulmonary valve and put a hole in her atrial septum.
January 27, 2012 – 9th heart catheter – They went in to take a look at her pulmonary veins. They also fixed her stent in her pulmonary artery.
November 16, 2012 – 10th heart catheter – They dilated the melody valve that is in her tricuspid valve.
June 20, 2013 – 11th heart catheter – They put in numerous stents in to her Superior Vena Cava (SVC) Vein, checked the stent that was in the pulmonary artery and created a hole in her atrial septum to relieve some pressure.
January 24, 2014 – 12th heart catheter – They put in numerous stents in to her Superior Vena Cava (SVC) Vein.
May 14, 2015 – 6th heart surgery – They replaced the Superior Vena Cava, put in a new tricuspid valve and pulmonary valve.
October 21, 2015 –13th heart catheter – they put a stent into her Superior Vena Cava (SVC) Vein.
June 7, 2017 – 14th heart catheter – they stented into her Superior Vena Cava (SVC) Vein and check the pulmonary veins.
January 25, 2019 – 15th heart catheter to check out the Superior Vena Cava (SVC) Vein as she was starting to get puffy in the face.
Miss Talia is 10 years old and is in the 5th grade. She enjoys reading, gymnastics, swimming, art, TOPsoccer, singing, dancing, school and playing and laughing with her siblings and friends. She is always smiling and has a great demeanor towards life.
Talia takes daily medication for her heart along with a growth hormone shot to help her grow and also has a history of a slight seizure disorder.
Heart Heroes has been a great resource for our family by not only providing emotional support but also by providing outlets to connect with other heart families that are going through something similar and these people become like an extended family. We are very thankful for that!