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"Bittersweet" birthday for lost daughter

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RAISING AWARENESS: Marion resident Mary Rasor holds her son Brody as she talks about her daughter Mya's life and death at one month old due to complications from intestinal malrotation, a birth defect. Rasor has fought to raise awareness for the condition, and the first ever Intestinal Malrotation Awareness Day will be dedicated in Fort Wayne on Mya's first birthday, Jan. 15.
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REMEMBERING MYA: A "shrine" to Mya, Mary Rasor's daughter who died one month after she was born, at Rasor's home contains mementos from family and friends. Rasor said the elephants symbolize "never forget" since elephants are known for their memories.

BY Carolyn Muyskens - cmuyskens@chronicle-tribune.com

Mary Rasor is celebrating her daughter Mya's first birthday next week – without Mya.

Mya died at one month old of complications resulting from a little-known condition called intestinal malrotation.

Her death has driven Rasor, a Marion resident, to advocate for awareness for intestinal malrotation.

Rasor's efforts have resulted in Fort Wayne Mayor Tom Henry declaring Mya's birthday, Jan. 15, to be “Intestinal Malrotation Awareness Day.”

The city's Dr. Martin Luther King Jr. Memorial Bridge will turn purple in recognition of the very first awareness day for the condition.

“Intestinal malrotation is a birth defect of the intestine, but you can't see it, so you don't necessarily know you have it,” said Erin Bohn, a representative of the Intestinal Malrotation Foundation.

When the intestines are formed inside a developing fetus, they undergo a series of rotations as they migrate into the abdominal cavity and attach to the abdomen in the proper place.

Intestinal malrotation occurs when the intestines don't complete this rotation or attach properly.

Bohn said it's not clear how common intestinal malrotation is because the research is limited.

“Most people will not know they have it unless they have some kind of complication,” Bohn said.

When Mya started experiencing problems feeding shortly after birth, doctors diagnosed severe acid reflux, Rasor said, and recommended a gastronomy tube (G-tube), or feeding tube, be put in.

After three weeks in the hospital trying to figure out what was wrong, Rasor got to take her daughter home.

But the problems persisted, with periods of colic and inconsolable crying, and one day Rasor couldn't get any food through the G-tube. A doctor told her to get in touch with the surgeon in the morning, as, he said, the G-tube was probably displaced.

“I woke up the next morning, turned on the lights, and it was the worst thing I'd ever seen in my entire life,” Rasor said.

Mya was “pale as a ghost,” and Rasor could see every vein on her stomach. “Her cry was so sad, so soft,” Rasor said.

She rushed Mya to Marion General Hospital, which transported the baby to Fort Wayne.

Mya's bowels were twisted 360 degrees, Rasor said.

Mya had volvulus, a dangerous complication of intestinal malrotation.

“(Volvulus) is a type of intestinal obstruction,” Bohn said. “It can cause the entire intestines to twist so tightly that it cuts off the blood supply … it can cause the whole intestines to die.”

Her daughter was placed into a medically induced coma while doctors removed the dead intestines from the infant's body. But more complications from the volvulus, including blood clots, led to sepsis and eventually a stroke.

The day after Valentine's Day, 2018, Rasor learned from a doctor that Mya was brain-dead.

“I held her as she took her last breath,” Rasor said.

Some people who have intestinal malrotation go undiagnosed for years, even into adulthood, if no complications arise, Bohn said.

But complications like the volvulus that killed Mya are so dangerous that Bohn and Rasor feel more doctors, nurses and parents need to be made aware of the signs and symptoms.

“Because of how quickly (volvulus) can lead to intestinal death, it needs to be recognized quickly. There can't be a delay in diagnosis,” Bohn said.

Rasor's campaign began when she realized there was no awareness day for intestinal malrotation.

“I don't want anyone else to go through what we went through,” Rasor said.

She is hoping to educate medical professionals as well as parents on the condition.

“The other thing that is sometimes happening is parents are told they're worrying too much, and their fears are not being fully listened to,” Bohn said.

“It's life-threatening, and it's something that shouldn't be taken lightly, no matter what,” Rasor said.

All donations made at the Jan. 15 dedication in Fort Wayne will go to the Intestinal Malrotation Foundation.

The foundation will be working with Rasor to spread awareness on Jan. 15 in honor of Mya.

“We're with Mary on this,” Bohn said.

One of Rasor's future projects is getting lawmakers on board to require hospitals to educate new parents about intestinal malrotation.

“The main symptom we want parents and medical professionals to remember is that green vomit is malrotation unless proven otherwise,” Bohn said.

Green vomit is always a medical emergency, Bohn said. Bright yellow is also a possible sign and parents should report bright yellow vomit to a pediatrician.

Other signs include vomit that looks like coffee grounds, problems with bowel movements such as bloody stools, decreased appetite, inconsolable crying and dehydration, according to an educational flyer created by the Intestinal Malrotation Foundation.

The first awareness day is a success for Rasor, but it's bittersweet, the mother said.

“I'm going to be meeting people that survived, babies that survived, but it's bitter because I don't have Mya,” Rasor said.

The Awareness Day ceremony will be held at Westview Alliance Church in Fort Wayne on Jan. 15 at 1 p.m. The mayor will speak at 1:30 p.m.

Rasor also has a Change.org petition that can be found by searching “intestinal malrotation.”