When Randy Rogers’ baby girl, Rumer Rain, came into the world on June 3, he and his wife, Chelsea, were positively over the moon – and completely giddy about her dark hair.
“My other two babies [daughters Isabel, 5, and River, 21 months] have my light hair,” Rogers tells PEOPLE. “Chelsea really wanted a baby with dark hair like her. The minute Rumer was born I was like, ‘Hell, yes!’ She had a full head of dark hair! The moment was just full of joy. We thought we had a healthy baby. We shared the news with friends and even posted a picture on social media.”
But the happiness quickly faded as they began to see signs that something was wrong.
“She wouldn’t eat and she wouldn’t wake up,” says Rogers of his baby girl, who passed away at just 6 days old. “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.
“They started running test after test and nothing was wrong with her,” he says. “It was a six-day process. It was heart-wrenching and grueling not knowing what was wrong. 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.”
Then came the diagnosis: nonketotic hyperglycinemia (NKH), a rare genetic disorder that affects about 1 in 66,000 newborns in the U.S. each year and has no cure. It impairs the brain and leads to seizures, breathing and feeding difficulties, muscle limpness and lethargy.
“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.”
Despite the heartbreak of losing his daughter, Rogers is trying to focus on the positives.
“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.”
The recessive gene both he and his wife have will also not prevent them from having another child.
“We’ll just have to do in vitro fertilization,” says Rogers. “There will need to be genetic screening and genetic testing done before the implantation of the fertilized egg. 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.”
Rogers also hopes to help other families struggling to cope with having a sick baby, and he has teamed up with Seton Medical Center Austin to create a fund to provide nesting suites for families of babies being cared for in neonatal intensive care units (NICU).
“Once you find out something is wrong with your baby, you’re scared to death. You don’t want to leave their side,” says Rogers, who is looking to create more “home-like” hospital suites for families to live in while their babies are in the NICU.
“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 … 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.”
To donate to NICU families in need at Seton Medical Center Austin, click here.