Meet Kid Captain Madison Williams

The day after she was born, Madison Williams was transferred to University of Iowa Stead Family Children’s Hospital, where she was diagnosed with a rare congenital syndrome.

“Madison has an official diagnosis of Oculo Auriculo Frontonasal Syndrome. To us, that's just a fancy way of saying she has some facial differences that make her look a little different than other kids,” says her mother, Stephanie. “But that diagnosis does not define Madison.”

The condition causes multiple head and facial anomalies, such as cleft lip and palate.

The doctors sat down and explained the procedure to us, why it was the best procedure for Madison and let us ask a lot of questions. As parents, we appreciate how the doctors describe different options and include you as part of the decision-making team.

“With all of the different things they were seeing on her ultrasound and the big unknown of what was happening, they recommended we consult with Iowa City to see if it would make sense to deliver in Iowa City, where they would probably be better equipped to handle any type of situation that came their way,” Stephanie recalls. “We knew that she was going to have some potential issues, we just didn't know exactly what.”

That week, however, “she decides she wants to come early,” Stephanie adds. “So my water broke and we didn't really have a choice, but to deliver in Des Moines.”

Doctors intubated Madison and put her on a ventilator, “then they just rushed her off to the NICU,” she remembers. “I got to see her for just a couple of seconds before she was rushed off so they could take care of her.”

As Madison was transferred to UI Stead Family Children’s Hospital, Stephanie and her husband, Kevin, drove to Iowa City to be with their newborn daughter.

Madison spent her first three and a half months in the neonatal intensive care unit, where her medical team worked to establish a plan of care. She received a tracheotomy to help with her breathing when she was one and a half months old and a gastronomy tube shortly after.

“They were all able to really collaborate as a team and explain what's going on with her and here's what we recommend and next steps,” Stephanie recalls. “They spent so much time explaining all of these things to us and helping us transition into what we know as our new normal.”

Madison was the first patient at the hospital to have vertical expandable prosthetic titanium ribs (VEPTR) implanted. The curved metal rods surgically attach to a child's ribs to treat childhood deformities of the thorax, helping to straighten the child’s spine and separate ribs so their lungs can grow and expand as the child grows.

“The doctors sat down and explained the procedure to us, why it was the best procedure for Madison and let us ask a lot of questions,” Stephanie says. “As parents, we appreciate how the doctors describe different options and include you as part of the decision-making team.

 As of this summer, the Carlisle girl has had 19 major surgeries, in addition to a multitude of other procedures.

“We have all the care that we need just a couple of hours away with all of our different specialists,” Stephanie says. “It's nice to know that we don't have to go out of state or add additional stress to an already stressful situation. We have an immense amount of respect and gratitude for our whole medical team.”

Now 9, Madison is in Girl Scouts and loves to dance, sing and perform.

“She shows other kids that while she may look a little different than them, that she is still very much like them and loves to do the same things they do,” her mother says. “She's a strong and resilient girl, for sure.”