A Heart for Jaxx

My baby boy, Jaxx Vito Daum, was born on 5/14/2020 with a double inlet left ventricle (single ventricle) heart defect. He has been inpatient at the Children’s Hospital of Philadelphia and has never been home. The original plan was to do a series of 3 surgeries to get his single ventricle to support his body. At a few days old Jaxx received a pa band on his heart then at a week old had the open heart Norwood heart procedure. It was discovered at 3 months old that his single ventricle was thickening and a heart transplant would be his only chance for survival. Because the complexity of his condition the hospital did not want to list him for transplant and told me and my husband to let him pass naturally. The conversations we’ve had to have these past few months have been extremely hard and no parent should ever have to experience.

We refuse to give up on our son who is continuing to fight hard everyday. Texas Children’s Hospital is willing to evaluate him and possibly list him for transplant so we are getting him transferred there in the next few weeks. These past few months have had its ups and downs but we’ve been lucky to have many people supporting and praying for us. 

My husband and I hate asking for anything but this road and our upcoming journey is becoming very expensive between out of pocket hospital expenses, deductibles,  traveling to and from Philadelphia weekly and now having to travel to Texas for what could be many months.

If you can donate anything it would be greatly appreciated and help us offset some of these costs and if not please continue to send prayers as they are helping us everyday. My children are my absolute world and I refuse to give up. Jaxx hopefully will get a chance at getting a new heart and if Texas can’t help us, I will continue to find a hospital that can. All I want is to see him and his brother grow up together and bring him home.
Thank you for all of the continued support!
Kristina, Connor, and big brother Jagger