Even if don't have children of your own, you probably know of a parent whose child had to spend time in the Neonatal Intensive Care Unit. Many premature babies are there for days, weeks, even months.
Tiny Maci Van Riesen had many of the same health concerns as other preemies. But doctors also found she had a very rare disorder; so rare that it required a medical procedure never performed before at Sanford Children's Hospital.
She's now big enough to fit snuggly in her mom's arms. That's a significant change considering baby Maci started out as only a small handful.
"She was born at 26 weeks, weighing just a pound, six ounces," mother Janelle Van Riesen said.
Janelle gave birth to Maci Grace Lynne on November 8 after complications with her pregnancy. The tiny bundle of joy entered the world more than three months early, bringing with her many of the usual complications of a pre-term birth.
"We've been fortunate that we haven't had all the issues that premature babies have, perforated bowel, some swallowing issues, breathing issues," father Grant Van Riesen said.
Maci immediately found a home in the NICU at Sanford Hospital. She spent several weeks on oxygen, which she eventually out grew. But, while breathing was an issue she was able to overcome, eating was a much bigger challenge.
"When we first started trying the bottle she would gag a lot. So, they thought initially she had reflux," Janelle said.
"So, feedings with a normal baby there's no problems. But with her, it created problems. It caused her to gag and choke. She could not get all of the milk down that she needed," Grant said.
Doctors determined that reflux wasn't the issue. Sanford's Dr. Patrick Munson, who specializes in Pediatric Otolaryngology, was brought in to take a look.
"We elected to go to the operating room to take a closer look at the esophagus," Dr. Patrick Munson said.
What Munson found was that Maci had a narrowing of the muscle that controls her ability to swallow. It's an extremely rare condition. In fact, it's one Munson had never seen for himself.
"How it was explained to us is it was one of 50 cases, possibly in the world," Grant said.
"I was terrified. You don't want your baby to be the experiment baby. I was really scared. But I was willing to try whatever we had to do to avoid, hopefully, maybe, the route of going to a feeding tube and going home on a feeding tube," Janelle said.
After consulting with former colleagues, Munson decided the answer might be Botox, a popular cosmetic drug often used to freeze wrinkles.
"Essentially, it's the same principle. What you're trying to do is paralyze the muscle so it can't be completely closed off. We selected three areas in the muscle to target that area," Munson said.
It was a first-of-its-kind procedure done at Sanford. Munson says it was both nerve-wrecking and exciting. So far, the procedure is paying off. Maci is now able to drink from a bottle much more easily. However, because Botox can wear off, she may need to have it repeated, or she may need surgery as she grows older.
"If this doesn't work, the potential is there when she's a little bit older to actually have surgery on her esophagus, cut that muscle to relax it. We just don't know at this point," Grant said.
It's been a long stay in the hospital watching Maci slowly grow to nearly seven pounds over 100 days in the NICU. And while it's been tough, Janelle and Grant say the care they've received from the nurses, doctors and the added technology has been amazing and has helped keep them going.
"It's hard, it's really tough. I wouldn't not be here with her. I'm ready to go home and take her home with us," Janelle said.
"It's tough, quite a few rough days, it's long. We're ready to go home," Grant said.
After spending 126 days in the hospital, Maci is now home with her family doing well.
Like many children, Maci's time at the hospital was made a little easier thanks to the Children's Miracle Network. She's one of several inspiring children we'll introduce you to during this year's CMN Special. The hour-long broadcast will air Thursday, April 5 at 7 p.m. on KELO T-V.