An autosomal recessive disorder caused the death of a country star’s daughter and now, he is opening up about the sad event. Randy Rogers, the lead vocalist of the Randy Rogers Band, revealed that he and wife, Chelsea Rogers, lost their baby daughter just days after her birth and being diagnosed with nonketotic hyperglycinemia (NKH).
A Country star’s daughter’s death at six days old has put the spotlight on a rare autosomal recessive disorder of glycine metabolism known as Glycine encephalopathy or non-ketotic hyperglycinemia or NKH. Glycine encephalopathy is defined below:
…after phenylketonuria, glycine encephalopathy is the second most common disorder of amino acid metabolism. The disease is caused by defects in the glycine cleavage system, an enzyme responsible for glycine catabolism. There are several forms of the disease, with varying severity of symptoms which includes seizures, breathing and feeding difficulties and time of onset. The symptoms are exclusively neurological in nature, and clinically this disorder is characterized by abnormally high levels of the amino acid glycine in bodily fluids and tissues, especially the cerebral spinal fluid.
Glycine encephalopathy, which has no cure, affects one in every 66,000 newborns in America. In a new interview with People Magazine, Randy Rogers opened up for the first time about the passing of his baby girl, Rumer Rain Rogers.
The lead vocalist of the country music group Randy Rogers Band and his wife, Chelsea Rogers, welcomed a beautiful baby on June 3. Little Rumer looked different from her two blonde sisters, and she inherited her mother’s luscious black hair.
The proud parents shared a photo of their bundle of joy on Facebook looking as happy as can be, but privately they were worried sick about the fact that their baby was unable to eat or wake up. The “One More Sad Song” artist said:
“She wouldn’t eat and she wouldn’t wake up.She was very lethargic, she never opened her eyes. We kept getting assurances from the doctors and nurses — a lot of babies think they’re still in mommy’s belly and they don’t want to wake up for a day or eat — but then Rumer went to the NICU about eight hours after her birth.”
A long list of tests revealed that the baby was suffering from nonketotic hyperglycinemia and six days after being born, she stopped eating and breathing on her own, and was put on a ventilator and died. The country star and his wife can have more children, but they are strongly advised to conceive via in-vitro fertilization, which will allow for genetic screening and testing. The singer explained:
“Chelsea and I always thought that we were two peas in a pod. Turns out literally we are genetically, we have the same exact recessed gene. The odds are astronomical. I’m just so happy that there are men and women so smart and passionate to be able to identify these things. Now because my daughter died and we now know we carry this gene, no one else in our family will have to have that happen to them and science is to thank for that.”
The sad event has pushed the parents to help other people dealing with such unthinkable predicaments. They have set up a charity to collect money to create nesting suites for families of infants in neonatal intensive care units or NICU at the Seton Medical Center Austin.
