Country singer Randy Rogers says the birth of his daughter Rumer Rain was an incredible moment. "We thought we had a healthy baby. We shared the news with friends and even posted a picture on social media," he tells People. Never did he imagine that their newborn would live just six short days. Weeks after his daughter's death on June 9, Rogers of the Randy Rogers Band is speaking about the heartbreak he and his wife Chelsea felt when Rumer wouldn't eat or open her eyes. Doctors told the couple that it was normal for a baby act as though she was still in the womb, and she was put on a feeding tube. But suddenly, she stopped breathing and had to be put on a ventilator. Test after test provided no answers, he says. "It was a six-day process. It was heart-wrenching and grueling not knowing what was wrong." Doctors soon came back with awful news.
Rumer had an incurable genetic disorder affecting the brain, known as nonketotic hyperglycinemia, which is found in about 1 in 66,000 babies annually in the US and, according to NKH Network, affects a child's ability to break down the amino acid glycine. "Chelsea and I always thought that we were two peas in a pod," says Rogers. "Turns out literally we are, genetically; we have the same exact recessed gene. The odds are astronomical." The couple, who have two other daughters, Isabel, 5, and River, 21 months, say they can still have more children, but will now use in-vitro fertilization and genetic testing to ensure "no one else in our family will have to have that happen to them," Rogers says. In the meantime, Rogers has created a fund to provide nesting suites for families of babies at Seton Medical Center Austin, like the one the couple used. "This is something every hospital in the country should have," he says. On Twitter, he thanks People "for giving our family the opportunity to tell our story and answer so many questions." (A "last hug" saved this dying baby.)