Country music singer Randy Rogers opened up about the horrible events that unfolded after welcoming his newborn daughter Rumer Rain into the world. His daughter was only 6 days old when she died as a result of a very rare brain condition. So sad.
It was supposed to be a happy time for Randy Rogers, 33, and his wife Chelsea, on June 3, because they had just welcomed their third child together. Sadly, that moment quickly dissolved into pure agony when their baby Rumer Rain began acting strangely.
“She wouldn’t eat and she wouldn’t wake up,” Rogers said of his baby girl to People. “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.”
The singer went on to explain, “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. 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.” How awful, truly a horrible experience for any parent to endure.
Little Rummer diagnosis came as a shock to Randy and Chelsea. Their baby had a rare genetic disorder called nonketotic hyperglycinemia (NKH). It affects about 1 in 66,000 newborns in the U.S. each year, according to the outlet and sadly there is no cure. The disorder impairs the brain and leads to seizures, breathing and feeding difficulties, muscle limpness and lethargy.
Randy explained that “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.” Rumer wound up passing away on June 9, just six days after being born.
Randy Wants To Help Other Families With Sick Babies
Even though the death of his daughter is truly devastating, Randy wants to use his experience to help other families struggling to cope with having a sick baby. He has teamed up with Seton Medical Center Austin to create a fund in order to provide nesting suites for families of babies being cared for in the NICU.
“Once you find out something is wrong with your baby, you’re scared to death. You don’t want to leave their side,” Randy told the outlet. He is looking to create more “home-like” hospital suites for families to be able to live there while their little babies are in the NICU. What a wonderful thing he’s doing for others. “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.”
He added, “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.”
HollywoodLifers — if you would like to donate to NICU families in need at Seton Medical Center Austin, click here.
— Brittany King