Meet Alexa: A Children’s Minnesota Champion

Meet Alexa: A Children’s Minnesota Champion

During Family Advocacy Day, Alexa and her family will discuss her health journey, Children’s Minnesota’s role in providing her with necessary care, and why we must invest in the future of patients like Alexa.

Alexa was diagnosed with a sacrococcygeal teratoma (SCT) in utero during a routine ultrasound, when mom Christie was 19 weeks pregnant. "The sonographer went from upbeat and talkative to very serious and quiet," says Christie. "We both knew immediately that it was not good news."

A doctor explained that they saw a mass on the Alexa's tailbone and suspected an SCT. The doctor didn't share much more, but referred them to specialists at Midwest Fetal Care Center at Children's Minnesota.

Alexa, a Children's Minnesota champion, is
participating in Family Advocacy Day 2023.

"Our world was turned upside down immediately as we learned how serious the diagnosis was and that her chance of survival was low," says Christie. For Alexa's parents, life became a whirlwind of appointments and never-ending research. That meant that Jackson, Alexa's brother, was spending lots of time with extended family, and Alexa's dad had to pass up opportunities at work.

"We were all in a constant state of fear and anxiety," says Christie.

Christie had open fetal surgery to debulk the teratoma at 24 weeks of pregnancy. Alexa had several other surgeries within her first few weeks of life and spent three months in the NICU. She came home with a feeding tube and colostomy. She later had several additional surgeries and procedures, including serial casting of both legs, frequent blood draws, intensive feeding therapy and regular sedated MRIs.

"Children's Minnesota saved my daughter's life and supported our entire family through a very traumatic time," says Christie.

When the pandemic started, Alexa was just beginning to reach a new level of medical stability, which meant the family had begun to have a bit more time and energy for a social life. Alexa had just entered an Early Childhood Education class for the first time and was loving interacting with her peers. "When COVID-19 hit, we had to once again pull back into isolation mode, which was very hard on her after finally getting a taste of a 'normal' childhood," says Christie.

"We have been blessed to have great coverage from private insurance, but we didn't learn about TEFRA medical assistance coverage from the state of Minnesota until a couple years into our medical journey," says Christie.

This meant the family still had immense out-of-pocket expenses for the first few years. Coupled with a drastic drop in household income due to Christie having to leave her job to care for Alexa, this led to significant financial stress.

Alexa has seen significant improvement and has been discharged from many of her specialists. She loves coloring and playing with animals. Currently, she wears orthotics on both legs but can walk despite dislocated hips and foot drop. She no longer needs a feeding tube or colostomy and remains tumor free, but still experiences daily challenges because of the teratoma.

Family Advocacy Day

Elevating patient stories and educating lawmakers remains critical to increase awareness about the essential care provided by children's hospitals.