With a heavy heart, Randy Rodgers opens up about the heartbreaking loss of their newborn daughter. Randy and his wife, Chelsea, welcomed their new baby girl, Rumer Rain, early this month on June 3rd.
In an interview with People Magazine told them, “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.” Doctors ran several tests and were unable to identify what was wrong. A week later, Rumer Rain was diagnosed with nonketotic hyerglycinemia (NKH), a rare genetic disorder affecting newborns. This devastating news meant that the family could expect brain impairment, seizures, breathing and feeding difficulties, muscle limpness and lethargy in their baby girl. Unfortunately, there still is no cure for this lethal disease.
Through testing, Rogers and Chelsea learned that genetically, they have the same recessive gene, making the odds of baby Rumer getting the disease astronomical. Just six days after the baby’s birth, she passed away.
“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,” Rogers told People.
The couple is open to the option of in-vitro fertilization, which would allow genetic screening before implanting a fertilized egg. Currently, Rogers and Chelsea are helping other families going through similar situations by teaming up with Seton Medical Center Austin to create nesting suites for families of infants receiving care in neonatal intensive care units (NICU). This allows families to comfortably be with their infants around the clock.
Click here to learn more about how you can help families with infants in NICU.