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Meet Beatrix, 3, from Whitefish Bay
When Beatrix's mom was pregnant, they discovered Beatrix had Down syndrome, as well as deudenal atresia – an intestinal condition requiring surgery.
Beatrix's mom was seen at Children's Wisconsin Fetal Concerns Program in order to help prepare for Beatrix's arrival and provide special prenatal care. She also switched obstetricians to give birth at Froedtert and the Medical College of Wisconsin so that Beatrix could be quickly admitted to Children's after she was born.
At 4 days old, Beatrix had surgery to repair the duodenal atresia and spent time in the Neonatal Intensive Care Unit. But, that was not the end of Beatrix's health issues.
While recovering, the family learned that Beatrix also had hypothyroid. At 9 months old, Beatrix had a second surgery to remove her adenoids and put in ear tubes to treat the chronic fluid in her ears. When she was 1 year old, Beatrix was diagnosed with infantile spasms and was admitted to Children's. In the neurology department, Beatrix started ACTH therapy that has greatly helped bring her seizures under control. Recently, Beatrix was diagnosed with sleep apnea and has undergone sleep studies and another surgery to remove her tonsils and adenoids for a second time.
While the family is very grateful that this treatment has been successful, the total cost is well into the hundreds of thousands of dollars. Beatrix continues to see many doctors at Children's and Wisconsin's Katie Beckett Program has helped her family afford all of the medical care that she requires.
"We are middle class working parents with private insurance through our employers, but we're sure that without Medicaid, we would be financially ruined," said Beatrix's parents. "Under the Affordable Care Act, we don't have to worry about being denied coverage because of Beatrix's existing conditions or lifetime maximums. We are so scared about the changes in health care and what they will mean for our family."