“There’s no hell on earth like a NICU [Neonatal Intensive Care Unit]. No, there’s no hell on earth like being released from the hospital without your baby,” said Carissa Froyum, UNI professor of sociology and mother of a child with Congenital Central Hypoventilation Syndrome (CCHS).

On Thursday, Nov. 5 UNI Dance Marathon and UNI Sociology Club teamed up to host a showing of the Academy Award-nominated documentary, “Our Curse,” followed by a personal presentation on CCHS by Froyum.

Froyum spoke of her son, who has the life-threatening disease.

“Our experience of bringing Hans home and the first months of terror of having a baby who doesn’t breathe in their sleep was the same. Babies sleep all the time, and unpredictably,” said Froyum on the family’s experience in bringing their son home from the hospital.

According to Froyum, the title, “Our Curse,” is a play on words in reference to the French myth of Ondine’s Curse.

“This is basically a reference to a myth in which a sea goddess fell in love with a mortal, and unfortunately the mortal’s name in the story is Hans,” Froyum said. “Her father basically gives Hans a curse that if he betrays her, he’ll forget to breathe and of course this is what ends up happening to Hans in the myth.”

The auditorium laughed along with Froyum in response to the coincidence surrounding the names of Froyum’s son and the mortal in the story, both named Hans.

CCHS is a spectrum disorder of the autonomic nervous system that affects an estimated 1,200 people worldwide. Individuals with CCHS hypoventilate, or lack a respiratory drive that tells them when they need more oxygen. So, the amount of oxygen that their bodies receive does not meet the needs of their bodies, allowing carbon dioxide to build up in the blood. Most people with CCHS do not breathe in their sleep.

“He jumps on a trampoline and he doesn’t get winded. So, he will have a perfect conversation with me and he is clearly not getting enough air. But he won’t look distressed at all,” said Froyum, offering an example to the absence of Hans’ respiratory drive when he is awake.

Following the screening, Froyum walked the viewers through her family’s CCHS story, from birth to now, illustrated by a slideshow of pictures from their range of experiences.

“This was right after Hans was born. What do you notice in the picture? Do you see what’s wrong?”  Froyum asked, referring to Hans’ deoxygenated blue body.

Due to the speed of Hans’ delivery, the doctors and nurses assumed his discoloration was a result of bruising, but Froyum recalls sensing that something was wrong beyond that.

After detecting what appeared to be a heart murmur during a routine checkup, the nurse used a pulse oximeter to measure Hans’ blood oxygen levels, which were alarmingly low.

“They whisked him away to the NICU. And that was the beginning of my NICU hell,” Froyum said.

It was in the NICU that Hans underwent several tests, resulting in no diagnosis. After 12 days in Allen Hospital’s NICU, Froyum’s family was sent home with Hans on oxygen and an apnea monitor. Froyum’s family lived with no diagnosis and very little improvement for months.

“So, after I met with this doctor a second time and he said, ‘The apneas are getting better! It was only 40 times this month,’ at that point I said, you know, I’d like a referral to the University of Iowa. And this is the day I took him to the University of Iowa,” Froyum said.

“That’s Dr. Starner, my hero,” said Froyum when she switched slides, “who knew what it was immediately. There’s no doubt in my mind that Dr. Starner saved Hans’ life. For a kid with CCHS to live five months on oxygen without a ventilator is amazing.”

Froyum went on to explain that it was also Dr. Starner at the U of I that granted their request to avoid a tracheotomy on Hans. She said this is because children with tracheotomies lose their ability to speak and regain it only through therapy later on in life.

Froyum said there are many things that make their family’s experience easier. Among them, Froyum focused on the annual CCHS conference, where they’re able to connect with other affected families, their two in-home nurses that care for and monitor Hans while the family sleeps and the willingness of the staff at Trinity Preschool in Cedar Falls to continue Hans’ care. She also mentioned social media networking and Iowa’s Medicaid waiver program for families with rare, life-threatening disease that many states do not offer.

Thursday’s presentation was dedicated to two-year-old, Afton Allen, one of only three Iowans with CCHS, who passed away this fall due to complications from the syndrome.