I am Keely Harris, president and founder of the g6pd Deficiency Foundation, which aims to create awareness of Kernicterus and how it can be associated with G6PD deficient newborns. I started the foundation because of what happened to my first grandson Brody. This story does not have to happen to another family…
Brody was born healthy but became jaundiced shortly after birth. This is not an uncommon occurrence; over 60% of all babies born in the United States have this condition after birth. Jaundice occurs when there is a rise of a toxin called bilirubin in the blood. This can cause the skin to appear yellow. Brody was treated with phototherapy to reduce the jaundice, and his levels of bilirubin were reduced to a level so that he was able to go home.
The next day at home, Brody was required to take a blood test for his bilirubin level. Doctors reassured his family that everything was fine. The next few days were joyous, with family and friends celebrating Brody’s arrival, but suddenly that all changed. Brody started not to feel well. Late Sunday night, he was not himself. Monday morning, his parents immediately took him to his doctor; he was breathing like he was congested, and his urine was darker than normal. The pediatrician examined him and thought everything was normal because he was born early. They were sent home and told not to worry.
The next day Brody was rushed to a Neonatal Intensive Care Unit because of severe jaundice. He was very lethargic and had no appetite. Brody had toxic levels of bilirubin in his blood and was diagnosed with Kernicterus, a type of brain damage caused by severe jaundice. When it was decided that Brody should be tested for G6PD Deficiency, the test came back positive. We were shocked to find out that 22% of children that have a Kernicterus event also have G6PD deficiency. So this was a perfect storm for Brody: he was born 2 weeks early, he developed jaundice and he was G6PD deficient (G6PDd) The worst part about this was that his family never heard about this deficiency, was told everything was normal by the pediatrician and was never informed how damaging neonatal(newborn) jaundice can be.
All parents should learn the signs of newborn SEVERE JAUNDICE. Thirty percent of readmitted newborns for hyperbilirubinemia have G6PD Deficiency.
So, what is G6PD deficiency? G6PD is an enzyme needed to make essential compounds in one’s body while protecting red blood cells. Unprotected red blood cells will break down quickly and release the toxin, bilirubin. This deficiency is the most common hereditary enzyme disorder in the world. However, many people do not know they are G6PD deficient. Right now, statistics show about 5% of the population test positive, affecting close to 400 million people. In the USA close to 7% of newborns are G6PD deficient. Medical care providers and their patients should know about this.
Brody’s battle is ongoing… I almost lost my grandson Brody, and the brain damage that affects his motor skills could have been avoided if my family had the knowledge we aim to bring you. Spread the word… tell the story… Awareness will change lives!