Sydney McFall   |   March 26, 2019

Late Diagnosis of HLHS: Diamond’s Story


Late diagnosis of HLHS

Melanie and Damon took their 14-day old daughter, Diamond, to a routine two-week checkup. It was there in a quiet patient room that the doctor noticed shallow breathing. Her O2 stat was 59, in other words, frighteningly low. She was immediately reffered for an echo and the results changed Melanie and Damon’s life forever. Diamond had a congenital heart disease called HLHS. “Diamond needed … immediate heart surgery because her heart was not developed. All of this happened so fast. The only way she would have a chance to live was to get heart surgery,” Melanie remembers, “I was feeling every emotion imaginable, it was surreal.”

A Complete 180

Diamond had her first open-heart surgery the next day. “She did not do well, they wanted us to take her off the ventilator. They gave us the option to do compassionate care at home, meaning let her go home to die. We told them we were not talking her off the ventilator,” Melanie said. A few days went by and Diamond shocked everyone by doing so well! She eventually recovered and was able to have her next three surgeries over the course of her childhood. All went well.

“We taught her to be proud of herself, not to be a victim.”

A True Diamond

Diamond is now 16. She loves reading and dancing. “We taught her to be proud of herself, not to be a victim,” Melanie said. Her name had already been decided on before her parents knew all that she would go through but turned out to be most fitting. Diamonds go through a long and hard process to become the special, shiny stones they are. The more it goes through, the stronger the stone. “Who knew our Diamond would really end up going through so much but in the end be such a beautiful survivor!” Melanie said.

Diamond was lucky to survive such a late diagnosis of HLHS without medical intervention. Most babies cannot survive without surgery just days after birth. Without the quick action of Diamond’s doctors at two weeks old, she would have died. However, these surgeries, while successful, are just a temporary fix. It is just a matter of time before the next intervention is needed because there is no cure for CHD, yet. Help us defeat this horrible disease that impacts 1 in 100 children by finding a lasting cure.

Read more stories of HLHS!

  1. Donna Moore   |   March 27, 2019

    She is truly a loving sweet little girl.💓💓💓

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