When Greta Wermeling made her early entrance into the world in October 2022, she was met with immediate medical challenges. Born six weeks prematurely at a Louisville hospital, she was intubated right after delivery. Her first night was particularly concerning, as Greta experienced periods of unexplained apnea (a breathing disorder). This led to her transfer to Norton Children’s Hospital, where specialists with the neonatal intensive care unit (NICU) began their search for a diagnosis.
After numerous initial tests provided no answers, genetic testing revealed that Greta had congenital central hypoventilation syndrome (CCHS), an incredibly rare neurologic condition that affects the way a person breathes while sleeping. There are only about 2,000 cases worldwide, as CCHS is caused by a rare genetic mutation. Because of the condition, Greta’s brain doesn’t signal her diaphragm to breathe when she falls asleep, even though her lungs are normal.
At just 22 days old, Greta underwent surgery to create an opening in her airway and insert a tube in her belly for feeding. She remained in the Norton Children’s Hospital NICU for 7 1/2 months.
“The staff at Norton Children’s became like family to us. From reading Greta books to making crafts and taking her on wagon rides, she was surrounded by so much love,” said Greta’s mother, Maddie Schueler.
A special bond in the NICU
Finally, on May 18, 2023, Greta was able to leave the hospital and begin the next chapter of her life at home. Her family never thought leaving the hospital would be bittersweet.
“We encountered so many wonderful people during Greta’s stay, but one of her nurses, Alicia Brewington, went above and beyond by becoming one of our home health nurses during Greta’s first year home,” Maddie said. We will never forget the kindness Alicia (and so many others!) showed our family during one of the most challenging times in our lives.”
Greta’s parents visited the NICU every day, but whenever they couldn’t be there, Alicia would text photos and tell them what Greta did each morning. She often would read books to Greta and even organized a half-birthday celebration when Greta turned 6 months old.
“It gave us a lot of peace of mind whenever we weren’t there,” Maddie said. “Although Alicia was someone Greta really got to bond with, in general, the nurses, therapists, doctors and staff at Norton took great care of her.”
Remarkable progress
Greta has made remarkable progress since coming home and has grown into a very curious, spunky and resilient toddler. She likes “Sesame Street” characters and loves to put things together and take them apart. Building blocks and magnetic tiles are her favorites.
“She’s doing really well now,” Maddie said. “She will always need a ventilator when she sleeps, but she’s off it for most of her awake time. She’s walking now and doing typical toddler things. Her feeding tube was removed several months after coming home. She now eats and drinks normally.”
Greta will turn 2 in October, and her resilience continues to inspire. She is walking and learning sign language — and is full of energy and personality. Greta continues to thrive and embrace living life to the fullest.
“She has been through a lot but doesn’t let it bother her and is a very happy child,” said Maddie, who has become involved with CCHS Network, a nonprofit organization that supports CCHS patients and families and helps drive research about the rare condition. “We hope one day there’s a safer treatment or even a cure for CCHS, but in the meantime, Greta isn’t letting it hold her back.”