Ava’s Waves

by Niki Kramer

Supporting: Help Fund Life-Saving and Life-Changing Research for Enduring Hearts, Inc.



After a very difficult pregnancy, Ava was born on April 24, 2018. We had been prepared that Ava would likely be blue and need resuscitated once she was born. Our baby girl came out screaming before she was even born! She was immediately transfered to Childrens Hospital of Pittsburgh to the Carduac ICU (CICU). She was diagnosed with a rare form of non compaction cardiomyopathy. (Don’t bother googling it! She doesn’t have the type you’ll read about, or find in text books). The first few days were very touch and go but our girl kept fighting and came out strong. She was transferred to the step down unit where we worked on feeding and lowering her milrinone. After roughly 4.5 weeks we were told we would be going home the following week! That same night, our daughter was diagnosed with NEC and we were transfered back to the CICU. After a long talk with her doctor it was decided that Ava’s heart would not be able to support her body. The day we were told we would be going home was the day she was officially listed for transplant. After 124 days inpatient, 82 days listed, and 17 hours after I told her doc his only job was to find this girl a heart WE GOT THE CALL! August 26, 2018 Ava received her gift of a new life. Ava suffered some major set backs and we were told that she would eventually need a repair of her right pulmonary artery. Ava continued to push through all of the obsitcals that came her way. After 148 days Ava was discharged from the hospital and we’ve been home (almost) every day since.

Enduring hearts is very close to our heart. As many of you know Ava’s heart will not last for forever. We will be blessed if it lasts for 15 years. They are looking at finding ways to extend the life of the donor hearts.  We ask that loved ones donate to this organization so that we can find ways to make Ava’s heart and all of her heart brother and sisters last a life time. ❤️❤️❤️

Enduring Hearts is the only nonprofit solely dedicated to funding innovative research that helps kids living with heart transplants live longer, healthier lives.

Our Story

A successful heart transplant should be the end of the journey. But for a child living with a new heart, it is just the beginning. After all, heart transplants don't last forever, the average only lasts about 17 years. 

Enduring Hearts exists to fund the critical, yet often overlooked research needed to help eliminate rejection, prevent life-threatening complications and reduce the risk that a child will need a second transplant. We fund research for promising new treatments, diagnostic tests, and clinical

procedures that help eliminate rejection and long-term complications.

Our goal is to create a world where every child who needs a new heart is able to get one that lasts a lifetime.

Help support the Enduring Hearts mission by contributing towards life-changing and life-saving research today!

You are a heart hero.

Atlanta-based Enduring Hearts launched in 2013 with a mission to fund research that increases the longevity of pediatric heart transplants, improve the quality of life for children living with a new heart and eliminate pediatric heart diseases that may lead to a transplant.

Thank you for your support!