HEALTH SENTINEL: Baby’s death spurs grief into action

Mary Rasor, center, and Andy Brown, at right, lost their newborn daughter in February to a birth defect called intestinal malrotation, an abnormal twisting of the intestine. The most serious complication is volvulus, in which the twisting cuts off blood flow, leading to tissue death. Rasor is working to raise awareness and to have hospitals educate new parents on the condition. Originally from Fort Wayne and now of Marion, she recently met up with her longtime friend Mysty Patell, left, of Fort Wayne. (Photo by Jennifer L. Boen for News-Sentinel.com)
The white lamb blanket pictured here belonged to Mya Nicole Brown, who died in February at age 1 month from complications of intestinal malrotation, which went undiagnosed by doctors despite the baby having ongoing feeding problems and reflux. The birth defect occurs in at least one in every 500 births yet is frequently misdiagnosed. The plastic bag at front contains purple #Myas Law bracelets, part of the baby's parents' campaign to get legislation passed in Indiana that would require hospitals to educate new parents about the condition. (Photo by Jennifer L. Boen for News-Sentinel.com)
In the hands of the late infant Mya Nicole Brown's parents, who are Mary Rasor, formerly of Fort Wayne, and Andy Brown, both now of Marion, is the cross inscribed with the Lord's Prayer that family members wear in memory of Mya, who died Feb. 15. Born in Fort Wayne, Mya was just 1 month old when she died of complications from intestinal malrotation, or twisting, of her small intestine. (Photo by Jennifer L. Boen for News-Sentinel.com)

Mother’s Day was especially difficult this year for Mary Rasor.

Just a few months ago, she buried her youngest child, a little girl she held in her arms for far fewer days than she carried her in her womb. Mya Nicole Brown, born Jan. 15 in Fort Wayne, was 1 month old when complications from a birth defect called intestinal malrotation claimed her life.

“I shed a lot of tears on Sunday,” said Rasor, formerly of Fort Wayne and now of Marion.

Amid tear-filled grief, however, Rasor, along with her family, which includes a daughter and son ages 11 and 2, and Mya’s father, Andy Brown, plus extended family and friends, are turning grief into action.

They are raising awareness of intestinal malrotation and pushing for the education of parents and the medical community on the condition, which affects at least one in every 500 babies, according to the Intestinal Malrotation Foundation (IMF).

THE BACKGROUND

What exactly is this condition? Our gastrointestinal (GI) tract starts out as a straight tube before differentiating in early gestation into three segments, the esophagus, the stomach and the small and large intestines, or bowels. Between five and 12 weeks of gestation, this developing system moves outside the abdominal cavity, undergoes a 270-degree counterclockwise rotation and returns back into the abdominal cavity to a very specific location, where it adheres to certain parts of the abdomen. If anything goes awry in this process, the intestine may rotate or kink abnormally.

While malrotation may not be diagnosed until adulthood if symptoms are not severe, it most often is diagnosed at birth or shortly after, particularly if the child suffers the most serious complication, volvulus.

In volvulus, the intestine twists around itself so severely that blood flow to the tissues is blocked, explained Meagan Glover, founder of IMF. Her son, Camden, now 3, had malrotation with volvulus at birth. Fortunately, it was discovered right away. But to save his life, 85 percent of his intestine was removed, and he spent his first 11 months in hospitals.

MYA’S SITUATION

Without timely diagnosis and surgical intervention, it can be fatal, as it was for Mya, who was a healthy 6 ½ pounds at birth. She was breech, which resulted in a hip dislocation. Also, her breathing was abnormally rapid, so she was taken to the NICU and later found to have two heart conditions that could either self-correct or be repaired with future surgery.

The main concern, however, was the spitting up after every feeding. To ensure adequate nutrient intake, a feeding tube was inserted in Mya’s nose. Bottle feedings were also encouraged.

An upper gastrointestinal (GI) tract test showed she had slight reflux. No lower GI tests were done. Doctors said Mya could go home when 2 ounces could be ingested within 30 minutes and kept down.

Progress was slow. Rasor, who works as a unit secretary at a Marion wound and ostomy clinic, suggested the baby be transferred to another hospital for a second opinion. Mya’s doctor at the time discouraged the transfer. Instead, the decision was made to release Mya to home if she had a feeding tube surgically inserted in her belly.

Now 3 weeks old, she was finally home, but periods of fussiness ensued. Rasor chalked it up to colic. Still, she stayed vigilant with care and feedings, keeping Mya’s bassinet close to her side of the bed at night.

CONDITION WORSENS

Day three at home found Mya almost inconsolable at times. Toward the end of the day, when Rasor could not get anything to flow into the feeding tube, she contacted the on-call doctor who surmised the tube might be displaced. He recommended Mya be brought to Fort Wayne for examination the following morning. She fed Mya during the night.

Rasor was up early the next morning to awaken her daughter for school. The baby was quiet, but Rasor knew it was time for her feeding. Her gut told her something wasn’t right. She peeked into the bassinet.

“I turned on the light, and she was as pale as a ghost.” Thick, yellow vomit was on the baby and on the Boppy pillow ring Rasor was instructed to use to counteract the baby’s reflux.

“She had a very faint cry.” She undressed the baby. “Her stomach was swollen, and you could see every vein in her belly.” Another ominous sign of trouble: Mya’s diaper was dry and clean.

Mya was taken to Marion General Hospital for transport by ambulance to Fort Wayne. In Marion, the baby’s vital signs were checked and an X-ray was done. Blood was visible on the rectal thermometer and the X-ray showed some level of intestinal blockage.

“At that point, I still did not understand it was life and death,” Rasor said. That reality set in when she and Brown were met in Fort Wayne by the hospital chaplain and a social worker.

SAD NEWS

Mya had two surgeries over the next two days. Toxins flooded her bloodstream when her bowel was untwisted, Rasor said. Early the day after the second surgery, Rasor called from a nearby hotel to check on Mya and was told the doctor, now a new one in charge of Mya, wanted to talk to her as soon as possible.

“That’s when I knew I was never bringing her home,” Rasor said.

IMF recently posted Rasor’s story on its website, a story all too familiar, Glover said.

When her son, Camden, was diagnosed with IMF at birth, she and her husband found a scarcity of information on the condition. Despite early diagnosis and initial surgery, Camden was still not faring well, so the Glovers turned to Boston Children’s Hospital where Dr. Mark Pudor works. He is a leading expert and researcher on short bowel syndrome, a lifetime condition for most who survive volvulus.

TRYING TO HELP OTHERS

“There is a need for education. Kids are dying,” Glover said, noting she’s advocating for the March of Dimes or a similar, high- profile organization to join forces on the issue.

“It’s often misdiagnosed as reflux,” Glover said. “That becomes a challenge because many GI doctors and pediatricians see reflux all the time. Some feel like this is just another textbook case of reflux.”

Parents need to advocate for their child and push for additional tests if they feel the problem is worsening or their doctor is not really listening, she said.

Though Rasor cannot do that for Mya, she’s not wasting a single opportunity to help educate other parents. She hopes to rally interest among elected officials to pass legislation that would require parents to watch a video or receive printed packets on the condition. She already has nearly 600 signatures on a grassroots campaign via change.org.

“I think of Mya when I wake up. I think of her when I’m at work. We miss her,” Rasor said. “If I can save one child’s life by raising awareness, then maybe my daughter’s death was not in vain.”

To purchase a #Myas Law bracelet for $3, with proceeds going to buy T-shirts to raise awareness and to the Intestinal Malrotation Foundation, email Rasor at rasor_mary@yahoo.com.

WARNING SIGNS

Green or yellow vomit is the most common sign of volvulus, or intestinal blockage due to malrotation.

Other red flags include:

• Coffee ground” vomit

• Vomiting undigested food

• Forceful or projectile vomiting

• Vomiting large quantities

• Abdominal distention

• Abdominal pain

• Refusal to eat or lack of appetite

• Excessive or inconsolable crying

• Dehydration; lack of urine

• Fever or other signs of infection

• Absence or decrease in bowel movements

• Painful bowel movements

• Diarrhea

• Dark brown, black or bloody stools

• Inability to pass gas

Source: Intestinal Malrotation Foundation.

For more info, visit intestinalmalrotation.com or the foundation on Facebook.

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