Four-year-old Henry loves playing with his siblings, spending time with animals and learning new things. His smile brings joy to everyone around him, especially his parents, Dr. Scott and Danielle Bauer.
What you might not see at first glance is the resilience behind that smile — and the remarkable community of care that has helped Henry overcome immense challenges from the very start.
Today, Henry and his family are sharing his story to raise awareness and inspire support for other local kids who will count on Marshfield Children’s this year.
A Difficult Start
Henry’s family lived in Virginia at the time he was born. Arriving at just 31 weeks, Henry weighed 2 pounds, 4.2 ounces and spent 71 days in the neonatal intensive care unit (NICU) before being sent home on oxygen. But leaving the NICU was just the start of his medical journey.
Diagnosed with Down syndrome, Henry was also hospitalized and treated for human metapneumovirus (HMPV) and underwent several surgeries, including open heart surgery to repair a hole in his heart, placement of a gastrostomy tube for long-term nutritional support, urology surgery and a procedure to remove his tonsils and adenoids and place hearing tubes — all within the first two years of his life.
Henry’s care teams eventually found that he was living with a silicone allergy, leading to another surgery to replace Henry’s silicone tubes with a different material that was safe for him.
For his mother Danielle, coordinating Henry’s care became a full-time job.
“In Virginia, I would spend hours on the phone every week just to get Henry a standard level of care,” said Danielle.
That all changed when the family discovered the complex care program at Marshfield Children’s Hospital. They chose to move to central Wisconsin for one reason: Henry needed care that would let them simply be parents again.
A Program to Support Families
Launched in 2019 and made possible thanks in part to philanthropy, the state-recognized children’s complex care program is designed to enhance patient care, reduce health care costs and improve families’ quality of life.
Children’s complex care staff work closely with primary and specialty care teams, along with insurance providers and external support resources, to manage necessary care for families.
“There is a lot of need for this program in the communities we serve,” said Sushma Thappeta, MD, pediatric hospitalist at Marshfield Children’s Hospital. “These kids are the most vulnerable population we serve. There is a lot that needs to be done for these families — it is mission critical.”
More than 100 families are currently enrolled in the program. The children’s complex care team, comprised of designated nurses and partnering care providers, provides support from birth up until the age of 26. Children enrolled in the program face a myriad of medical challenges, from chronic issues caused by genetic conditions, premature birth or adverse events to short term complex medical needs.
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Our goal is to advocate for families and kids. We support every need, from medical to social to financial. We want to enable parents to just be guardians of their kids while we take care of the care coordinator role.
Sanford Health Marshfield Clinic
For the Bauer family, the complex care program has been life changing.
“Once the complex care team in Marshfield had all of Henry’s information, it took just two days for 13 specialists to call me to set up appointments,” Danielle said. “That was unheard of for us.”
New Options for Care
Since the family’s move, Henry has received several new diagnoses and ongoing treatments. His care team discovered he has an antibody deficiency and now undergoes monthly immunoglobulin therapies. He receives speech, occupational, physical and other therapies to manage his conditions.
The child life team has added a new level of care for Henry and his family, using medical play and coping techniques to offer emotional support. In the past year, Henry has become friends with Dr. Dolly Pawton, Marshfield Children’s Hospital’s first facility dog, entirely funded through philanthropy.
“Henry is considered non-verbal,” said Danielle, “but he lights up and says ‘Dolly, Dolly!’ when he sees her. It’s incredibly magical to hear.”
The children’s complex care team continues to help coordinate Henry’s care — including his home health and transportation needs outside the hospital.
“Until you walk a day in a special needs parent’s shoes, you don’t realize the medical challenges there are to conquer,” said Danielle. “The complex care team removes that stress. Honestly, they’re like family to me. They are phenomenal.”
Living Beyond Limits
Today, Henry continues to make steady progress, supported every step of the way by his care team at Marshfield Children’s Hospital and his devoted parents.
“Henry is so smart and strong,” said Danielle. “This community is amazing and they truly care. We know they’ll be here to support us and Henry.”
Give for Children. Give for Good.
If you’re inspired by this story, give for local kids like Henry today. 100% of each gift stays local to help kids in central and northern Wisconsin have the healthy futures they deserve.
With your support, we can continue to fuel health, healing and hope for kids in our community.