For most families, balancing time between coordinating activities and enjoying time together can be a challenge. But for families who have children living with complex medical conditions, striking that balance is almost impossible. Parents find themselves spending nearly all their time on the phone with doctors’ offices, insurance companies, schools and countless other resources to support their child’s needs.
Parents like Dr. Scott and Danielle Bauer, who moved from Virginia to Wisconsin for one reason: their son Henry needed care that would let them simply be parents again.
Meet Henry
Three-year-old Henry was born at 31 weeks, weighing just 2 pounds, 4.2 ounces. He spent 73 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.
Within the first two years of Henry’s life, he was hospitalized and treated for human metapneumovirus (HMPV), underwent open heart surgery to repair a hole in his heart, surgery to insert a gastrostomy tube for long-term nutritional support, urology surgery and a procedure to have his tonsils and adenoids removed and hearing tubes placed.
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.
Then they discovered the children’s complex care program at Marshfield Children’s Hospital.
“Once Wendy here 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.”
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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.
Nurse Practitioner
A Program to Support Families
Launched in 2019, the state-recognized children’s complex care program at Marshfield Children’s Hospital 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 in the communities we serve for this program,” 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, with many waiting to join. 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.
“We have goals that we work with each family on,” said Dr. Thappeta. “We try to get these kids home and keep them home, help them navigate school, even just help kids write their name, eat solid foods, or maybe go on a family vacation. Things that most of us take for granted.”
Moving Forward
Since Henry’s family moved to Marshfield, his care team discovered he has an antibody deficiency and is now on immunoglobin therapies. His ongoing care consists of speech therapy, occupational therapy, physical therapy and other medical care to manage his physical challenges. The children’s complex care team coordinates everything — 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. “Wendy and her team remove all that stress. Honestly, they’re like family to me. They are phenomenal.”
Today, Henry continues to make steady progress. His family’s goal for him is simple: give him the tools he needs to go as far as he can. With the help of the children’s complex care team, his specialists and primary care providers and the community surrounding his family, he has no limits to what he can do.
“We just want to see Henry succeed in every way he can,” said Danielle. “He is so smart and strong. He has an infection smile. This community is amazing and they truly care. We know they’ll be here to support us and Henry.”
Powered by Philanthropy
Philanthropy makes this all possible, funding the complex care program as well as therapies, child life services, adaptive equipment, translation services and financial aid kids and their families need throughout a pediatric health care journey. Donations even provide holiday gifts for families in need.
“These families are so grateful for the service we provide,” said Wendy. “It’s hard work, and I never know what my day will look like. In the end, it’s so rewarding to know that you helped parents take a breath and just be parents.”
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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.