Together for Juliette
Thank you for visiting my fundraising page for the Congenital Heart Walk. Raising funds for CHD research is critically important to all Heart Warriors and Heart Angels, and personally very meaningful to me.
On May 1, 2020, my husband and I welcomed our daughter Juliette into this world. Juliette was born with a hole in her heart, which we were told about during the pregnancy. Thankfully, the hole did close shortly after birth, but we were then told that there is also a different type of defect. Juliette has a left aortic arch with aberrant retroesophageal right subclavian artery. This is resulting in restricted blood flow to her upper body and built up pressure in the artery onto the esophagus. This is causing her to have a very weak upper body not allowing her to do most things a 13 month old can do. Most importantly and what has caused us to take action is the fact that the compression on the esophagus makes it harder for her to eat and drink. With all of this said, you would never know that anything is wrong just from looking at her. She is the happiest little baby and her smile lights up the entire room.
Juliette will be undergoing cardiothoracic surgery next month to reroute and divide the different ligaments of the artery. She has a positive prognosis after the surgery next month and doctors are confident that she will go on to lead a normal life. I am truly thankful to the CHD warriors who used their own personal experiences to help guide us throughout this process. Without them, we wouldn't have found the specialized doctors who are going to treat Juliette and perform her surgery. Many CHD families do not have a happy ending to their story. There is so much more that we can do to better understand and treat all CHDs.
We may be on this roller coaster ride with Juliette for now, but I am now more determined than ever to help advocate for families so that they can also have access to new treatments and more research.
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