Erica Thayer   |   January 26, 2019

Born with HRHS: Natalie’s Story


HRHS Rockstar

Kathleen and Frank Jones had their world flipped upside down at their 20-week ultrasound appointment. It was a complete shock to find out their unborn baby girl had hypoplastic right heart syndrome (HRHS) and pulmonary atresia. “Up until that point, my pregnancy had been normal,” Kathleen remembers, “My heart dropped, and I was sobbing uncontrollably.”

Natalie was born at 36 weeks into a room filled with friends and happy faces. She was taken to the NICU soon after, where she spent two weeks. At four days old she underwent her first heart catherization. After six long days, Natalie’s parents were finally able to hold their newborn daughter.  She was thriving. “The doctors and nurses started calling her ‘Rockstar’.” Natalie was sent home with a pulse ox machine and was “the happiest and most calm baby” her parents could ever ask for.

Hope for the Future

Natalie had her Glenn surgery in 2017, stage two of the current treatment for HRHS. After recovery, she has been a relatively healthy baby ever since. “She loves being outside and loves life. She is a happy kid and I think she realizes that she is a miracle,” Kathleen said. Natalie is expected to have another open-heart surgery at three years old.

Natalie, born with HRHS, and her family.

“Natalie is two years old. I hope and pray through new technology that she will be on this Earth for an extremely long time and be happy and healthy while doing it,” Kathleen said. Fear struck the Jones family everyday while in the hospital. Watching their little girl be hooked up to machines was an everyday occurrence for the first few weeks of her life. They have chosen to live a life of joy and hope. However, that does not mean there is a cure for Natalie’s HRHS. Only more surgery, catherizations, and cardiology appointments. Help us find a cure for this horrific disease that affects 1 in 100 children.

Learn more about HRHS!

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