Update, March 5, 12:20 p.m. | Haiden Rau, Lettie Jude's mother, says that her baby is doing great.
Original story | A small heart is putting up a big fight at a Kansas City, Missouri, hospital this Valentine’s Day.
At only three-and-a-half months old, Lettie Jude Rau has spent pretty much every minute of her life in a hospital. Shortly after her birth in Springfield, doctors realized her heart wasn’t working properly.
“Especially with your first child, you’re not knowing what to expect,” Lettie Jude’s mom, Haiden Rau, explained. “Not hearing your baby cry for about 10 minutes is pretty tough. I never did hear her cry in the delivery room.”
Previously undetected, doctors determined Lettie Jude has a condition called cardiomyopathy, which means her heart can’t pump blood as it should.
Doctors rushed the infant 150 miles north to Children’s Mercy Hospital where she had open-heart surgery at five weeks old.
Lettie Jude is connected to a ventricular assist device (VAD) which does the pumping for her, but it means she has to remain in a hospital room until she gets a heart transplant.
“She’s done great with (the VAD), it’s really changed her. She’s a normal baby now, she just has two tubes coming out of her,” Rau said.
One burden is off her plate thanks to Ronald McDonald House Charities of Kansas City. Rau and her family can stay at one of the charity’s homes for free while Lettie Jude is at the hospital, saving her from driving back and forth to Springfield or paying for a hotel herself in Kansas City.
“Ronald McDonald House is our home now. When we’re not here, it feels weird,” Rau admitted.
CEO Tami Greenberg said Rau can stay at the house as long as it takes for Lettie Jude to get a heart transplant - which could take as long as eight months.
“The courage they have is amazing,” Greenberg said. “Sometimes people will say to me, ’It must be a sad place to work because there are so many families that have stories that are hard.’ I say, ‘It’s not a sad place, it’s a joyful place.’”
It’s joyful because so many families find success. The walls inside the Ronald McDonald House are either covered with hearts or pictures of children who overcame their illnesses.
“These pictures of other families on the wall, I hope they help it feel a little less lonely, a little less scary, a little less isolating,” Greenberg said.
Rau felt the love as soon as she walked in. From Ronald McDonald House to her faith, and from an online fundraiser to her family, Rau has received support that makes her confident Lettie Jude will persevere.
“She’s definitely a fighter,” Rau said. “She’s a miracle.”
One day, Lettie Jude’s picture will be on the wall inside Ronald McDonald House, representing the biggest heart in the building.
