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Richard is a 10-year-old who loves football and baseball, an avid coin collector and one of 5 boys in a tight-knit family. Most recently, he also became the first pediatric patient in the state of Nebraska to receive TZIELD infusions, a prescription medicine that can delay the onset of type 1 diabetes for approximately 3 years.

After receiving FDA approval, Children’s Nebraska—in collaboration with other hospitals across the region who’ve administered this leading-edge treatment—began developing a protocol for infusion, helping us better serve this patient population in our very own community.

Richard’s family has been in and out of Children’s Endocrine Clinic as his brothers were diagnosed with T1D and, when lab testing revealed he was likely to be diagnosed within the year, too, they took a leap on this new treatment.

“You have to do everything you can for your children, and this was worth a try,” said Richard’s dad, Seth.

“I wanted to try it,” Richard added. “It’s not scary because there are nice people here who are just trying to help you.”

TZIELD is the first disease-modifying therapy for T1D, a disease that occurs when the immune system attacks and destroys the body’s insulin-producing cells, leading to dependence on exogenous insulin therapy for survival. The screening process for this drug is specific, driven by FDA guidelines, and patients must meet certain criteria to begin treatment. Families in the Omaha metro area can be screened for free through Trial Net.

After completing two weeks of daily infusions at Children’s, Richard and his family are excited to see the positive impact this has on his life, helping suppress the physical and emotional tasks of diabetes management for a while longer. He can continue living a normal day-to-day life without worrying about injections throughout the day, checking blood sugar or wearing an insulin pump or continuous glucose monitor just yet.

“Having the option in Omaha was key, I don’t know if we could have done it at another (further away) hospital,” Seth said. “With Children’s, everything is in one system. His doctors, the infusion staff and everything has been amazing.”

At Children’s, we’re proud to continue improving the quality of—and access to—innovative pediatric care for patients like Richard.

To learn more about Endocrinology and Diabetes care at Children’s, click here.

In October 2020, two families—strangers at the time—received the same overwhelming diagnosis for their daughters: leukemia. Treatment started the following day, landing both young girls at Children’s, where they met and began going on daily walks around the hall. They quickly became best friends and started sporting matching outfits.

Five-year-old Keely and 7-year-old Haylee felt different from their peers, having lost their hair to chemotherapy and needing ports placed in their chests, but both girls had a friend to lean on who was having the same experience. They shared countless special memories, including a pizza party while snowed in at the Carolyn Scott Rainbow House, Children’s hospitality house for patients and families. Their treatments often fell on the same day, giving the girls something to look forward to rather than fear and dread. Coloring, playing and laughing have been powerful medicine for Keely and Haylee.

“Their spirit and temperament during treatment have been inspiring,”
– Jill Beck, M.D., division chief of Pediatric Hematology/Oncology.

This special bond created at Children’s extends to the girls’ families, as well. Keely’s mom, Cami, says, “I don’t know how we would have gotten through this without having that connection. We were going through the exact same thing at the exact same time, and it feels like a lifelong friendship that’s only developed within the last two years.”

Haylee’s mom, Kayla, says, “It’s nice to have someone else who knows what you’re talking about and going through. To other families, I would say it’s important to take it one day at a time, find a good support system and learn to accept the help.”

In December 2022, both girls celebrated their final chemo infusion treament, final spinal tap and port removal. Children’s expert team of doctors and nurses, who have provided them with care and support every step of the way, as well as family members and friends, lined the hallway to clap them out of Children’s Infusion Center one final time—a memorable celebration of true courage and resiliency.

“We have approximately 100 new cancer diagnoses a year and have done hundreds of these clap-outs, but this was the first double walkout I’ve been a part of,” Dr. Beck says. “The girls’ bond was unique because they were so close in age and had the exact same diagnosis at the same time. So much of this journey for them has been side by side, so it made sense for them to finish it together, too.”

Learn more about Hematology and Oncology at Children’s Nebraska.

After 548 days at Children’s Nebraska, Jagger goes home for the first time!

Jagger Nathan—born with a rare and serious genetic disease—spent the first 18 months of his life hospitalized at Children’s Nebraska.

Torie Nathan, Jagger’s mother, had no idea there were any complications during pregnancy. It wasn’t until her water unexpectedly broke at 31 weeks that she was rushed to an emergency department in Omaha where an ultrasound revealed Jagger’s congenital heart disease.

Shortly after Jagger was born on April 9, 2022, he was immediately transported to Children’s Nebraska where genetic testing revealed his CHARGE Syndrome diagnosis—an extremely complex syndrome that often involves extensive medical and physical difficulties such as birth defects and problems with the heart, trachea, esophagus and more. The Nathans expected a 6–8 week Neonatal Intensive Care Unit (NICU) stay when they arrived, but that turned into 18 months between the NICU and Cardiac Care Unit (CCU).

“We were so excited to have Jagger in our lives, but we were also so scared of the unknown,” says Torie.

For Jagger, two of the most concerning challenges he faced were his heart defect and a problem with the connection between his food and wind pipes.

“Jagger was born with a hole in his heart,” explains Ram Kumar Subramanyan, M.D., Ph.D., division chief of Cardiothoracic Surgery at Children’s Nebraska. “Additionally, the left side of his heart, which is intended to pump blood to the body, was underdeveloped. The pathway for blood to flow from his heart to the body was also small.

Upon admission, Jagger needed a breathing machine to support his lungs. He also needed medication to ensure his body received enough blood supply to stay alive. “Given all the complexities that Jagger was born with, his chances of survival were very low,” says Dr. Subramanyan.

At any given time, Jagger’s medical team consisted of every specialty from Cardiology, Cardiothoracic Surgery, Gastroenterology, Neurology to Pulmonology and Ophthalmology. “Jagger has been checked over from head to toe in every direction possible,” says Jagger’s father, Justin Nathan.

During his 18-month stay at Children’s Nebraska, Jagger underwent numerous surgeries and needed multiple interventions, medication and support. He was placed on a feeding tube and underwent a tracheostomy so he could continuously be supported by a breathing machine.

When Jagger was 15 months old, tests showed that his heart had grown enough to undergo the final repair he needed. Dr. Subramanyan, an expert in converting complex heart conditions into two-ventricle circulation, worked alongside Children’s Nebraska cardiothoracic surgeon Camille Hancock Friesen, M.D., to close the hole in Jagger’s heart and connect the heart properly to the lungs and body, which resulted in normal circulation and a fully healed heart.

“Jagger’s progress represents the best medical care that modern technology has to offer. Every single team member gave their best to ensure he had the best possible outcome,” says Dr. Subramanyan. “His parents were also integral to the success, partnering with the medical team to ensure things went well.”

After experiencing every emotion from joy to frustration to sadness for 548 days, Torie and Justin received word from their medical team that Jagger was healthy enough to go home for the first time in October.

“Our time at Children’s was amazing. Although it was much longer than we ever imagined, it was worth every second to have our little boy at home with us,” says Torie. “I thank God every day for the many doctors, nurses and team members at Children’s Nebraska and all they did for us. They are truly amazing people, and we are forever grateful to them.”

With support from Children’s Lactation team and Mothers’ Milk Bank, Kelly’s donation has impacted families nationwide.

Some people are able to make a profound impact in a short period of time on Earth – and that was certainly the case for baby George.

Born in September 2022 after a seemingly healthy pregnancy, George perplexed his team of doctors right off the bat by not crying or eating for hours. But it’s when his oxygen levels dropped and a nurse witnessed him having a seizure that everything took a turn. Follow-up testing and an MRI revealed a rare condition: polymicrogyria, a condition characterized by abnormal development of the brain before birth.

George was transferred to the Neonatal Intensive Care Unit (NICU) at Children’s Nebraska one month after this diagnosis, where his recurrent seizures continued—lasting anywhere from 10 minutes to two hours. His condition was severe, resulting in seizures that couldn’t be controlled by medication, muscle weakness, problems with swallowing and feeding and more.

Although George’s mom, Kelly, had her heart set on breastfeeding—just like she’d done with her other two children, William and Molly—she pivoted, doing what was best for George. During his NICU stay, Kelly began to pump, and milk was provided through George’s g-tube.

“I was crushed but clung to any part of the plan that I could,” Kelly said. “From the minute he was admitted to the NICU, I kept pumping. I just wanted that for him and wanted to give him the best start I could.”

Kelly soon realized her supply was significant and began freezing milk. With enough for George and other babies, her milk donation journey began. A journey that would continue even after George passed away at eight months old.

Small but mighty, George exceeded doctors’ expectations, spending six months at home with his family. Six months filled with family walks and trips to the zoo, museum and park. “We were told he likely wouldn’t walk, talk or even smile, but he just exceeded everyone’s expectations and thrived in his own way at home,” Kelly said. “And he did smile quite a bit—at least once a day—beating the odds there, too.”

While facing an unimaginable loss, Kelly turned her grief into continued action. With ongoing support from her family and Children’s Lactation team, she donated more than 8,600 ounces to Mothers’ Milk Bank Colorado leading up to George’s 1st birthday. Kelly’s tremendous gift was distributed to 29 facilities in 11 states, impacting nearly 50 families across the country.

Children’s partners with Mother’s Milk Bank Colorado to help collect and transport donated milk from qualified donors in our area. Our Milk Depot accepts donated milk and safely transports it to Mother’s Milk Bank for screening, pasteurization, processing and distribution across the country.

“My donation was because of him. It was hard, but George kept me going to donate for other babies,” Kelly said. “Without him, I wouldn’t have been able to do it. Even after he passed, I continued to donate for him and I just kept thinking of how he’s making a difference for his friends in the NICU or anyone struggling with breastfeeding. That meant the world to me.”

“It became a family thing for us too,” she added. “My other two children would see me pumping and ask if I was going to give the milk to other little babies. I got to teach them about what I was doing.”

Kelly’s generosity, perseverance and resilience are inspiring. She has gifted other babies and families not only with nourishment but with strength and love—all in honor and memory of George.

“Pumping is hard work but there’s so much support from Children’s Lactation team and Mothers’ Milk Bank that you don’t have to worry about the other stuff,” Kelly said. “Mothers’ Milk Bank provides free bags if you’re donating and Children’s took care of all the logistics. I just did drop-offs and they made the experience so positive. It was easy to see the love and consideration they put into their work.”

If you’re interested in donating or want to learn more about the resources and support available through Children’s Lactation team and Milk Depot, contact our team today by calling 402-955-6152 or emailing [email protected].

No one knows the impact school preparedness can have better than the Witcher/Schrader family from Lincoln, Neb. In January 2023, 9-year-old Angelina, a student at Kooser Elementary School, collapsed in her fourth-grade classroom during math.

Angelina experienced ventricular fibrillation (VF), a life-threatening arrhythmia that’s considered the most serious abnormal heart rhythm. It’s extremely dangerous because it can lead to sudden cardiac arrest if not treated immediately.

Although rare in pediatric patients, sudden cardiac arrest Can’t be prevented.

“The best thing we can do for now is to prepare for these events by having life-saving medical equipment nearby and people trained to use the equipment,” says Matt Sorensen, M.D., pediatric electrophysiologist at Children’s.

CPR was administered immediately to Angelina by the school nurse. When the paramedics arrives, they continued CPR, defibrillated Angelina’s heart and intubated her. Once stable, she was transported to a hospital in Lincoln before being flown to Children’s.

“This was by far the worst day of our lives. Our fear of losing her or a poor outcome was overwhelming,” says Jeffrey, Angelina’s great-uncle and guardian.

According to Christopher Erickson, M.D., a cardiologist at Children’s, VF is a life-threatening and often fatal heart rhythm that occurs when the lower pumping chambers of the heart have no coordinated heartbeat. Instead, due to many rapid electrical impulses, the bottom chambers just quiver with no effective pumping. To remedy this abnormality, surgery is often needed.

The Children’s team of Ali Ibrahimiye, M.D., a cardiothoracic surgeon; Jeffrey Robinson, M.D., an electrophysiologist; and Peter Hunt, PA-C, worked together to place an implantable cardioverter-defibrillator (ICD) in Angelina’s chest. ICDs are often used as the treatment of choice for potentially life-threatening ventricular arrythmias.

Angelina’s ICD, which is about two-thirds the size of a hockey puck and half as thick, tracks her heart rhythm. Dr. Erickson says that for most patients, the ICD observes and analyzes the heart. If Angelina experiences an irregular life-threatening rhythm, it will deliver a shock to her heart if needed. Her physicians and family feel confident that her ICD will keep her safe while they wait for genetic testing results to further explain the cause of her arrhythmia.

Prior to collapsing, Angelia was a healthy child who participated in dance, volleyball and basketball and took piano and violin lessons. She exhibited no signs or symptoms of a heart condition.

While VF is not common in pediatric patients, doctors at Children’s often treat up to four cardiac arrest cases each year; some patients have had cardiac arrest before, while others exhibit identified risk factors for cardiac arrest.

Unfortunately, the first symptom of VF is cardiac arrest. Some patients may experience fainting spells or even seizure-like symptoms, while others have noticed palpitations.

According to Dr. Erickson, VF can be caused by multiple factors, including genetic syndromes that make the heart more vulnerable to the condition. Other factors may include infections of the heart and poor blood flow to the heart that results in muscle injury.

Angelina’s future is bright because of the swift actions of her school nurse and the medical intervention of the paramedics and the expert team at Children’s. Since her procedure, Angelina has returned to school full time and has resumed her piano and violin lessons. In May, her school received a Heart Safe School designation through Children’s Project ADAM program, signifying a commitment to having a response plan, CPR and automated external defibrillator (AED) training and advanced preparedness to keep students, staff and visitors safer in the event of an unexpected cardiac event on campus.

“CPR and AEDs save lives! Angelina would not be here today had it not been for the quick response from her teachers and school nursing staff and the expert care from Children’s,” says Kevin, Angelina’s great-uncle and guardian.

Click here to learn more about Children’s Criss Heart Center Team.

Eighteen-year-old Karys Kouba thought her stomach pain was appendicitis. So did her mom, and so did her primary care doctor until the CT scan revealed something else: a massive tumor.

“It was something I didn’t want to think about,” Karys’ mother, Katie, said. “It was hard.”

The team at Children’s eased some concerns by revealing the ganglineuroma tumor was benign; however, its placement in her abdomen presented an entirely new set of challenges. The tumor encircled her aorta, pressed against her spine and was entangled with blood vessels.

“It was in a very dangerous place,” said Patrick Thomas, M.D., Director of Digital Innovation in Pediatric Surgery. “It affected not only the blood vessels to the body and the blood vessels that deliver blood to the bowel, but also impacted the kidneys.”

To remove the tumor, Dr. Thomas and the Pediatric Surgery team collaborated with Children’s Innovation Team to 3D print much of Karys’ midsection to better understand the tumor’s placement. Dr. Thomas then took the imaging a step further by creating a virtual reality landscape to plan the surgical procedure.

“As far as I know, even in the Midwest, no one has done that—at least an application in real life,” said Abdulla Zarroug, M.D., division chief of Pediatric Surgery.

Once created, the futuristic virtual reality environment provided insights about Karys’ tumor at the sub-centimeter level.

“You’re actually able to walk around in the anatomical environment and turn yourself into a little robot or surgeon,” Dr. Thomas said.

In February 2023, Children’s surgical team applied that futuristic planning to an 18-hour procedure to break apart and remove Kary’s tumor. Due to the complex nature of the operation, a multi-disciplinary team was on hand, including General Surgery, Neurosurgery, Urology and Cardiothoracic Surgery.

“I think of it like a symphony,” Dr. Thomas said. “Everyone has mastery in their area, but then you all come together and you are able to perform a beautiful masterpiece.”

For Karys, that masterpiece is a healthy future thanks to the collaboration and innovation at Children’s.

“Dr. Zarroug and Dr. Thomas have been amazing, compassionate people,” Katie said. “I felt very comfortable coming here and putting my daughter’s life in their hands because I knew that they were the best.”

Pediatric Surgery

Children’s is the region’s leader in developing and performing new, innovative pediatric minimally invasive surgical procedures.

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