Tiny But Mighty, Lorelei Overcomes Devastating Digestive Disease
For Jordyn and Michael Threat, having a premature baby was frightening on its own. Then learning that their firstborn, Lorelei, had a potentially fatal digestive system disease was an additional shock. But despite her size, Lorelei was tough. And with the support of a compassionate Mayo Clinic team, she rebounded time and again.
Lorelei
Threat is a spunky, curious 2-year-old with a passion for purees. She goes
bananas for bananas, but she couldn’t care less about foods that are hard,
crunchy or chewy. Lorelei’s dietary quirks are thanks in part to the fact that
she is a choosy toddler. But her pickiness about what she eats also is rooted in
how food leaves her body, which, for Lorelei, was a life-threatening process as
a newborn.
Shortly after being born prematurely on Sept. 17, 2017, at 30 weeks gestation, and weighing just 2 pounds, 4 ounces, Lorelei developed necrotizing enterocolitis, or NEC. With this condition, the wall of a premature child’s intestine becomes overrun by bacteria that cause infection and inflammation. It affects 5% to 10% of all low birthweight babies, and it’s one of the leading causes of death in premature infants.
“This is a scary diagnosis, and it can develop really quickly,” says Lorelei’s mother, Jordyn, who is a Mayo Clinic pharmacy technician.
Although the condition threatened Lorelei during the first several weeks of her life, the tender and fastidious care provided by a team of Mayo Clinic neonatal nurses, neonatologists and pediatric surgeons allowed her fragile body to overcome the difficult disease.
“I
don’t know where we’d be without Mayo Clinic,” Jordyn says. “We have
a lot of specialists here that I don’t think we’d get elsewhere. We’ve had our
ups and downs — moments where I’ve felt overwhelmed, and then times where I’m
like, ‘Whoa, things are starting to improve.’ But we are at a point now where
we’re doing well with Lorelei. I feel like we receive great care at Mayo.”
Frightening diagnosis follows sudden arrival
Even before Jordyn gave birth to Lorelei, the mother-to-be knew her family was in good hands. Diagnosed with preeclampsia, Jordyn was hospitalized at Mayo Clinic Hospital – Rochester, Methodist Campus when she 28 weeks pregnant. One morning, after several weeks in the hospital, Jordyn woke up feeling ill. Her obstetric team began monitoring the baby and saw that the child’s heartbeat was dropping. The team performed an emergency cesarean section and delivered Lorelei.
When Jordyn regained consciousness following the delivery, Lorelei was awaiting transport to the Neonatal ICU at Mayo Clinic Hospital – Rochester, Saint Marys Campus. “I got to see her for a couple of minutes, and by the time my husband, Michael, got there, she was ready to go,” Jordyn recalls.
In
the Neonatal ICU, Lorelei’s care team fed her. After about four days, however, Lorelei
began having blood in her diapers — a symptom of necrotizing enterocolitis.
Although
it’s not clear what causes necrotizing enterocolitis, says Denise
Klinkner, M.D., Lorelei’s
surgeon, the condition usually involves the portion of the small intestine near
the ileocecal valve, which separates the small and large intestine. In infants
with necrotizing enterocolitis, bacteria normally living inside the intestine
pass into the intestinal wall and cause infection and inflammation. In severe
cases, the intestinal wall develops holes through which air and stool can pass.
“If there are holes in the intestine, we can see free air on the X-ray,” Dr. Klinkner says. “Lorelei did not have that.” In Lorelei’s case, the condition was moderate enough to be managed medically with IV antibiotics and IV nutrition.
“(Dr. Klinkner) did a great job of displaying her confidence and was really reassuring.”
Jordyn Threat
Lorelei
received her nutrition through the IV feedings for 14 days while her body
responded to the antibiotics and healed. “Once she got better, they tried
feeding her again,” Jordyn says. “But she got NEC again.”
This
time, Lorelei’s symptoms included vomiting, as well as bloody stools. Again,
oral feedings ceased, and IV antibiotics and IV nutrition started. Fourteen days
later, oral feedings resumed. Again, Lorelei struggled to eat. “She wasn’t
keeping anything down,” Jordyn says.
X-ray
imaging revealed that the repeated inflammation and healing had damaged Lorelei’s
sigmoid colon — the portion of large intestine closest to the rectum. “She
had a narrowing in the sigmoid colon and ileocecal valve that made it hard for
things to pass through,” Jordyn says. “She needed surgery to remove
those strictures, so she could eat.”
Healing prompted by careful surgery
For
Jordyn and Michael, sending Lorelei to surgery after such a rocky start to life
was scary. But Lorelei’s medical team eased their anxiety. “The night
before Lorelei’s surgery was really special.” Jordyn says “Dr.
Klinkner came in to talk to us about the risks and benefits of the surgery,
told us what to expect and asked what my fears were. We talked about her
experience as a surgeon. She did a great job of displaying her confidence and
was really reassuring.”
During
Lorelei’s operation, Dr. Klinkner checked the affected gastrointestinal
structures with a camera to determine if the procedure could be performed less
invasively using laparoscopy. But that wasn’t an option. “Her intestine
was so distended that I did an open incision,” Dr. Klinkner says.
First
Dr. Klinkner removed a stricture that had formed in the sigmoid colon. Next Dr.
Klinkner addressed the ileocecal valve, through which stool was having a hard
time moving. Although some stool could move slowly through, it wasn’t clear
whether the damaged tissue was causing Lorelei’s persistent symptoms. As part
of the operation, Dr. Klinkner tested the elasticity of the valve tissue to
check if it opened normally. It didn’t. “We removed those two segments of
bowel and reconnected everything,” Dr. Klinkner says.
A
few days following surgery, after Lorelei’s body had a chance to recover, her
medical team fed her through a feeding tube. “If you feed directly into
the stomach, it has a better chance of staying down than her swallowing it,”
Jordyn says. “So we did that first and slowly built up a tolerance and
then gave her bottles.”
When
Lorelei was able to take bottles regularly and gained enough weight to pass the
car seat test to ensure she would be safe riding in a vehicle, she was
discharged from the hospital. “We went home on Thanksgiving Day in 2017,
and that was huge for us,” Jordyn says. “The fact that we could go
home and have dinner with our family was major.”
Long-term relationships support recovery
At home, Lorelei continued gaining weight. But five weeks after she came home from the hospital, she developed a Clostridium difficile infection, or C. diff, and had to be hospitalized again. “She was so dehydrated, and had terrible vomiting and diarrhea, so she was hospitalized for about a week,” Jordyn says.
People
who’ve had C. diff are more susceptible to developing the infection again, and
Lorelei had two additional bouts of it within her first year of life. “Having
this over and over again gave us a referral to a gastroenterologist, and we’ve
been seeing them ever since,” Jordyn says.
“With Mayo, we are well-equipped, well-supported and connected, so we are set up for the long term.”
Jordyn Threat
The
relationships the family has established through Lorelei’s medical journey help
them navigate ongoing therapies for setbacks, such as developmental delays and
chronic constipation, related to Lorelei’s medical issues. “She didn’t
fully walk on her own until she was 2, and she still doesn’t eat hard food on
her own,” Jordyn says. “We’re working really hard with occupational therapy
and with the Help Me Grow program to work on these things.”
Help
Me Grow, an interagency initiative of the Minnesota departments of Education,
Health, and Human Services, provides Lorelei routine support in the form of physical,
occupational and speech therapy.
As Lorelei grows, her parents will stay in close communication with her Mayo care team, which includes Molissa Hager, a nurse practitioner, and Rayna Grothe, M.D., and Mounif El-Youssef, M.D. — both pediatric gastroenterologists. “Everyone who takes care of Lorelei has an interest in our lives and wants the best for her,” Jordyn says. “With Mayo, we are well-equipped, well-supported and connected, so we are set up for the long term. It’s going to take a while, but I think we’ll eventually get to that point where she’s fully recovered and caught up from being premature.”
For
parents of children with chronic gastrointestinal issues, it’s important for
providers to make positive connections with the families, Dr. Klinkner says. “This
disease does lead to long-term relationships with families, and hopefully we
can help parents go through what is often a very stressful time.”
HELPFUL LINKS
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