I connected with Alexia a few years ago through Facebook and blogging. You can read her updates at her blog “Life”. There are lots of things to love about Alexia. One of the biggest things that I love about her is her ability to connect with fellow CHD parents, letting them know that it’s okay to let your child live their life. Through Alexia, I’ve learned that it’s okay for me to let Natalie run, play, skip, jump, and wrestle her brother. Life allows her to do that, despite a heart condition. I cherish my own child’s abilities more than anything because of learning this through her. Alexia is very inspiring. She’s smart, pretty, and very unique. Like all adult survivors of congenital heart disease, Alexia is not defined by her CHDs. She has been a critical part of keeping me sane with Natalie’s diagnosis. She is selfless and full of Life. Here is her story:
“I was born December 29th,1985 at 2:35 am. I was born by C-section at 42 weeks gestation. It wasn’t until I was a day old that I was found to have Double Outlet Right Ventricle, Multiple VSDs and Mild Pulmonary Stenosis as well. At 2 days old I had the Pulmonary Artery Banding done.
At six months old I had the Blalock-Taussing shunt put in.
When I was four, it became clear that it was time for me to have my Double Outlet Right Ventricle repair. It wasn’t clear what options the surgeons down at UCLA would go for. It was decided that I was an excellent candidate for the repair and that was the surgery I had done in August of 1990. In 1998 I had emergency open heart surgery to replace my aortic valve. I had a very rough recovery period.
In June 2005 I was told by my cardiologist that I would need a second Aortic Valve replacement. I was starting to experience symptoms that were indicative of heart failure. The doctors wanted to do the surgery right away because my right ventricular function was still really good. In the weeks that followed it was decided that we would go with a mechanical valve this time.
Monday July 11th,2005 I arrived at the hospital at 5:30am and by 7:30am I was ready and waiting to get going. The following Tuesday, just 8 days after surgery I was released.
I have had minor issues since then but have not been hospitalized for them. I have a full life with a close family and great friends. I am getting ready to launch my own photography business and I look forward to helping people capture their memories with photographs.”
Now that you have read Alexia’s story, please visit her Facebook page right away!
She has also created a Carepage that her mom will help update starting tomorrow. There are updates pre-surgery right now, so feel free to sign up and follow Alexia’s heart health. She’s having a catheter ablation on Monday to help ease, hopefully, erase her arrhythmias. Please send love and support for Alexia. It’s been 7 1/2 years since her last heart surgery, so as you can only imagine, it’s a good reason to want this catheterization over with and have it be successful.