Randy Rogers Opens Up About the Death of Newborn Daughter Rumer Rain
"We thought we had a healthy baby," he says. "We shared the news with friends and even posted a picture on social media."
However, it soon became apparent that something wasn't right with the newborn girl: She wasn't eating, was lethargic and hadn't opened her eyes or really woken up.
"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," Rogers recalls. "They started running test after test, and nothing was wrong with her. It was a six-day process.
"It was heart-wrenching and grueling not knowing what was wrong," he adds. "She was put on a feeding tube pretty early on because she couldn't eat or swallow, then she decided to stop breathing, and we had to put her on a vent."
Doctors finally diagnosed Rumer with nonketotic hyperglycinemia (NKH), a rare genetic disorder that impairs the brain, causing seizures, breathing and feeding difficulties, limp muscles and lethargy. It affects approximately one in 66,000 newborns in the United States each year, and it has no cure.
"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," Rogers explains. "The odds are astronomical."
However, the Rogers won't let the possibility of passing this disease on prevent them from possibly having another child.
"We'll just have to do in vitro fertilization. There will need to be genetic screening and genetic testing done before the implantation of the fertilized egg," Rogers says. "It's given us a lot of joy and hope knowing that it is possible for us to do this; it's just going to have to be a different route than the traditional one."
Because of their experience, the Rogers are also hoping to help other families with sick babies. They have created a fund at Seton Medical Center in Austin, Texas, to provide nesting suites for the families of NICU babies.
"Once you find out something is wrong with your baby, you're scared to death. You don't want to leave their side," Rogers says. "Chelsea was discharged from the hospital after just two days, but our nesting room enabled us to still be there for Rumer and hold her around the clock.
"You want to be there all the time, you want to know who is taking care of your kid, you want to speak to the doctors and nurses," he continues. "This is something every hospital in the country should have, an amazing system of support set up for parents caring for a sick child, and it's something Chelsea and I have become very passionate about."
Despite their grief, Rogers and his wife -- as well as daughters Isabel, 5, and River Rose, 21 months -- are trying to stay positive and focus on the good that's come of the situation.
"I'm just so happy that there are men and women so smart and passionate to be able to identify these things," he says. "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."
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