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Stories – 2018 Annual Report

Amazing Stories

At Children’s Minnesota, we see amazing every day. In the fighting spirit of a 25-week-old preemie. In the resilient five-year-old learning to walk again. And in the sense of pure optimism we see in every child. Caring for kids is a privilege we’ll always do our best to live up to. That’s why, whether it’s for a brain tumor or a flu vaccination, we will never stop trying to develop better ways to treat children. We will continually reimagine what it means to provide the best health care. Read just a few of these amazing stories below.

Aiden

Genomic Medicine

For the first nine months of his life, Aiden was a typical, healthy baby boy. Then his health suddenly began to decline, greatly concerning his parents. He stopped crawling, lost strength in his neck, and was no longer happy and thriving.

Aiden’s parents brought him to Children’s Minnesota. A genetic test diagnosed Aiden with an extremely rare condition called TK2-related mitochondrial depletion syndrome, which affects the ability of the skeletal muscles to work correctly. There is no cure, and Aiden’s parents were told he only had months to live. On June 18, 2015, he passed away.

Fortunately, through the growing genomic medicine program at Children’s Minnesota, the family was able to find answers — and hope. They gained the critical information needed to positively move forward with their family plans, welcoming Greyson, a healthy boy, in 2016, and are expecting another baby boy this year.

Watch their story

Razyia

Cancer

RaZyia was just five years old when she began complaining of leg pain so intense she couldn’t sleep or walk on it. After a day in the Children’s Minnesota St. Paul emergency department, a doctor walked into her room and shared the devastating news with RaZyia and her mom, Aminga — “We think it’s cancer.”

RaZyia was immediately admitted to Children’s and began treatment for B-cell acute lymphoblastic leukemia. She was a patient four days a week every other week, which meant she and Aminga got to know her nurses, doctors, child life specialists and social workers well.

Today, RaZyia is in remission doing maintenance chemotherapy. Thanks to Children’s, she is back in school and able to act like a happy, active six-year-old.

Learn more about Cancer Kids Fund

Alexa

Fetal Surgery

Christie was 19 weeks pregnant when doctors discovered her baby had a tumor growing on her spine. By 24 weeks gestation, it was larger than her body. Open fetal surgery was necessary to remove the bulk of the tumor, relieving tremendous strain on the developing heart, and improving chances of survival for the baby. The procedure was a success, and one of fewer than 15 to be completed in the world. The fetus gestated until 30 weeks when she was delivered via C-section, and today, baby Alexa is a happy, healthy toddler who loves to play with her brother and explore new things.

Christie recalls, “The day of the open fetal surgery was terrifying and comforting at the same time. I hadn’t known these people long, but they were familiar faces, and I knew they were going to take care of us. We just felt like we were in the right place. It was an overwhelming feeling.”

Learn more about Midwest Fetal Care Center

Gage

Neuroscience

Every so often, a little device pings in ninth-grader Gage’s chest. He may not notice it, but he knows it’s making his life better. Gage was the first pediatric patient in Minnesota to receive a new medical device that delivers vagus nerve stimulation (VNS) to prevent seizures.

While VNS therapy is not new, the technology in Gage’s implanted device is: It’s the first to have a detect-and-respond feature. The device scans for signs that might preclude a seizure, such as a spike in heart rate, and then triggers a pulse of electrical current to the brain to eliminate or reduce the severity of the seizure. It also enables doctors to customize the therapeutic settings based on an individual’s seizure pattern. Since getting his new device at Children’s more than a year ago, Gage has suffered far fewer seizures and reduced his medications significantly.

Read more about controlling seizures

Intensive Care for the Tiniest Babies

Children’s neonatology program is one of the nation’s largest, with outcomes among the best in the world. We care for more than 3,000 newborns each year — more than any other program in the Upper Midwest. In addition, Children’s and Allina Health have teamed up to deliver the highest level of care at The Mother Baby Center, which integrates labor, delivery, normal newborn and neonatal services under one roof. In 2018, Thomas George, MD, joined Children’s Minnesota as the first-ever system medical director of neonatology, helping to lead the transition to a single, integrated team across our St. Paul and Minneapolis neonatal units.

Meet Dr. George

Innovative Care Before Baby is Even Born

The Michael and Ann Ciresi Midwest Fetal Care Center (MWFCC) brings together a team of highly trained experts in maternal-fetal medicine and pediatric specialty care that supports families and babies when a high-risk pregnancy poses challenges — from diagnosis to delivery and beyond. MWFCC is one of only a handful of centers across the country performing the most complex procedures, including laser fetoscopy and open fetal surgery.

Thanks to the generosity of two anonymous donors, Children’s announced the institution’s first endowed chairs in late 2018 — Dr. Jim Sidman Endowed Chair in Fetal Research and Dr. Carol L. Wells Endowed Chair in Fetal Surgery. An endowed chair is created with a gift of $2 million and recognizes the accomplishments of the chairholders, providing a critical source of consistent financial support for their work, ultimately transforming the lives of patients in our care.

Support fetal medicine

Comprehensive Heart Care, Now Including Transplant

One of the largest pediatric cardiovascular programs in the Upper Midwest region, Children’s Minnesota offers a full range of services, from early-fetal imaging tests to pioneering surgeries for babies, children, teens and adults born with congenital heart defects. In 2018, Children’s launched its heart failure and heart transplant program to better serve the children we treat with heart disease by allowing them to remain closer to home.

Advancing Academics and the Practice of Medicine

Children’s Minnesota is training the future pediatric clinicians in our state and beyond. We’re proud that 100 percent of pediatric, medicine and pediatrics, and family practice residents in the state train at Children’s Minnesota, as well as 75 percent of medical students, regardless of future specialty.

We also focus on research and innovations that are completely kid- and family-focused. From improving day-to-day quality of life for children and teens to adopting cutting-edge technologies, we will never stop looking for better ways to serve the most amazing people on Earth. In 2018, we had 465 active research studies, 187 clinical trials, 147 peer-reviewed publications, and $14.1 million from industry contracts and federal, state and foundation sponsors.Children’s Minnesota is regularly recognized and awarded nationally for excellence in care, quality, innovation and industry leadership. In 2018, we were the first and only hospital in Minnesota to be verified as a Level I Children’s Surgery Center by the American College of Surgeons — the highest level of distinction for health systems that perform complex surgical procedures in newborns, children and teens. We also earned Magnet recognition from the American Nurses Credentialing Center — the most prestigious distinction a health organization can receive in nursing excellence and high-quality patient care. Children’s is also regularly ranked by U.S. News & World Report.

Advocating at the National Level

In 2018, Children’s Minnesota participated in the Children’s Hospital Association Speak Now For Kids Family Advocacy Day. Joining over 50 families from across the country, Shelby and Joe Tietel, along with their superstar kids Charlie and Mya, took to Capitol Hill, in Washington, D.C. to meet with members of Minnesota’s congressional delegation and talk about the importance of Medicaid funding to kids.

“We were able to talk with them about the concerns we have regarding Medicaid and the importance that it holds for children with complex medical needs, and their families. Sometimes it feels like a full-time job to keep up, on top of raising a medically complex child, while many of us are working full-time jobs, as well,” said Shelby. “They listened and responded, ‘What do you need from me; how can I make it better?’ Those are words that to a parent of a complex child hold so much value.”

Join the Children’s Advocacy Network

Introducing Walk for Amazing

The first annual Children’s Minnesota Walk for Amazing fundraising event took place in 2018.

It brought together 2,000 people at U.S. Bank Stadium to have fun and raise money for Children’s Minnesota and the patients and families we serve.

Watch the video