Baby battling rare disorder - KWWL - Eastern Iowa Breaking News, Weather, Closings

Baby battling rare disorder

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(KWWL) -

A Cedar Rapids family is struggling to fight for their daughter's rare medical condition. Their daughter Morrenda is battling a rare condition, where she has little to no immune system. 

It is a condition so rare, in Iowa alone, one baby is born with this condition every two years. 

Morrenda Cubbage is just 6 months old, but for the entirety of her life so far, she's been a warrior. 

When we first heard about Fetal Omphalocele, we were devastated," said Morrenda's father Andy Cubbage. "I couldn't sleep for days. And my wife had trouble sleeping too. We would just burst out in tears. We didn't know what to do."

At 17 weeks pregnant, the Cubbage's found out their baby would be born with organs outside her body.

"I remember hearing the first few seconds of her cry and that was like oh my god, she's alive," said Cubbage. "Thank god. We were steady, going good and then next thing we know we got dealt a second blow."

While doctors were operating on Morrenda to adjust her organs, they discovered she had Heterotaxy Polysplenia. A birth defect where she has little to no immune system. 

"What am I to do?" said Cubbage. "Am I supposed to wear a mask 24/7 around her? Because what if my sickness gets her sick and is deadly to her? 

Even a common cold could be deadly. And there are virtually no answers.

"We don't know," said Cubbage. "We're scared to death." "We try to keep her away from as many people as possible, but we don't want to feel like we're keeping her away from having a normal childhood."

The disease so rare. She's surviving through a feeding tube. 

"Give your baby a chance," said Cubbage. "When we were talking to the doctor about Fetal Omphalocele, he pretty much recommended abortion, because it gave her less than 50% chance of survival."

Cubbage says it's when he sees her daughters smile, that he's reminded why he has to continue to fight for her health. 

"When she gives you that smile, it makes your heart fill up with so much love, you actually wanna cry because you feel so good that she's happy," said Cubbage. "But yet, you know what she's going through and what she's been through. It's been through what more than what most people in their adult lifetime would go through."

Children's Hospital of Philadelphia specializes in treating Heterotaxy. The family says with their finances and complications of her care, taking her there is just not feasible at the time. 

They say it's an obstacle, but they're going to do everything in their power to bring Morrenda there.

If you would like to help the family fight baby Morrenda's rare condition, or donate to help them treat her, visit her GoFundMe page at https://www.gofundme.com/hopeformorrenda

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