About Us

Talia's Hope for Hearts was formed in 2025 after the loss of our daughter, Talia. Talia was born with a complex Congenital Heart Defect. With a single ventricle, Talia faced a series of palliations that would help her live, grow, and thrive. 

Amongst her diagnoses, Talia had a double inlet left ventricle, a hypoplastic aortic arch, TGA, and an interrupted aortic arch. 

At a week old, Talia had her first open heart procedure. The next few weeks were difficult but Talia started to thrive and we started talking about discharge. Unfortunately, that never. happened.  We came close, on several occasions. We completed the discharge education, we had medications and supplies delivered to the bedside and our house. Talia even passed her carseat test! 

Instead of a trip home, we had trips to radiology and the cath lab. Talia had stents place in her central shunt at just under 2 months old.  She developed clots in her legs shortly thereafter.  While working on proper anticoagulation across the next few weeks, Talia started to have desaturation events.  Despite many echocardiograms and evaluations, the cause wasn't clear. There were theories, and some were so close, but the evidence wasn't there. Then one Monday morning, Talia started to struggle. Additional oxygen and hours of imaging led to a trip to the cath lab. Once there, a fully occluded left pulmonary artery was identified, along with a clot forming in her shunt.  Her team decided the best course of action was to move to the Glenn procedure. This would remove Talia's shunt dependency.  Unfortunately, Talia crashed onto bypass in the OR. She came out on ECMO to give her heart time to heal and regain function. Later that week, when her heart was showing considerable improvement, she went back to the OR to have here shunt replaced and separate from ECMO. Talia showed us she wasn't ready, so she returned from the OR on ECMO again. Across the next few days, her cardiac function continued to decline instead of improve.  Talia lost her fight for life an hour and forty three minutes shy of being 11 weeks old. 

While Congenital Heart Defects are common, they vary wildly.  When being diagnosed in utero, one of the first things our pediatric cardiologist told us was not to Google the diagnosis. I tried anyway. I shouldn't have, but I did. I found nothing aligning to the initial diagnosis. 

That was scary, and it was only the beginning. 

Talia's care team at Connecticut Children's was amazing.  They were thoughtful and thorough. We can't say enough good things about them and will forever consider each and every one of them family.

We recognize that without intervention, there was only one possible outcome. With intervention, there were possibilities. They gave us time. We're grateful for the time we had, but I'd be lying if I didn't say I wanted more. I still want more.  

Talia was here. Talia lived. We lost Talia.  

Our mission at Talia's Hope for Hearts is to help children and families affected by Congenital Heart Defects.  To take the tragedy of losing Talia and to make something good come from our immeasurable loss.  Whether we raise awareness of Congenital Heart Defects and help other families feel a little less alone, or raise money to help further research, education, and treatment, we want to help give others more. More time. More memories. More life.