Erica Thayer   |   May 22, 2020

Delayed CHD Diagnosis — Oliver’s Story


“This has been one of the hardest yet most rewarding times of my life. I wouldn’t trade him for the world!”

Delayed Diagnosis

Crystal was told her baby boy was going to be born very small. “He was an Intrauterine growth restriction (IUGR) baby which causes birth usually at 37 weeks and under the 10% in weight, which can cause many medical issues,” she said. She was originally told he would be fine besides his small birth size. However, she was not prepared for what she would be told after he was born. 

Oliver was born blue and not breathing properly. He was put on some oxygen and she was told it was due to him being an IUGR baby. She was told he would be fine. “No one ever checked anything else for complications. When we went home he had a very hard time feeding and would pass out when I finally got him to breastfeed due to lack of oxygen.” They later realized he was having tet spells.  

TOF Diagnosis

At two weeks old he was given a TOF diagnosis after a doctor heard a loud heart murmur. “The pediatrician was very shocked no one had supposedly noticed prior to the appointment.” After Oliver’s parents found out about his condition, Crystal noticed his whole leg had started turning completely blue and took him to the Children’s ER. He was admitted for further tests and evaluation. 

“Little did we know, that was the admit that led to his first open heart surgery. His condition declined extremely fast.” He had his first open heart surgery at just one month old. Sadly there is no cure for CHD. Oliver will require more surgeries, cardiology check ups, and medical interventions. “For now we are dealing with his surgeries and taking it one step at a time.” 

Lack of CHD Awareness

Thanks to the doctor that heard his murmur, his surgeons, and his mother’s advocacy, Oliver is still here today. “I find it extremely frustrating that none of the doctors or nurses had been taught to find the signs of possible CHD in newborns. I can’t help but think what could have happened due to lack of knowledge. This is my main concern with the fact that CHD is so underfunded,” Crystal said. 

From the outside you often cannot tell what CHD warriors have been through without seeing their scars. They sometimes need oxygen and often take daily medications, but CHD on a day to day basis an invisible disease. Education is essential to awareness, awareness is essential to funding, and funding is essential in finding a cure for CHD. Help us raise awareness for CHD and find a cure so that kids like Oliver can grow up and live the long and healthy lives they deserve!

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