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Karter’s Story: From Trauma to Recovery, Thanks to Teamwork

For Karter, a 4-year-old from Hastings, Neb., a ride on his dad’s lawn mower is nothing out of the ordinary. However, on April 13, 2022, this routine father-son task resulted in an accidental injury that required transport to Children’s via helicopter.

Marissa Stec, Karter’s mom, recalls the terrifying day her son inadvertently got off on the wrong side of the mower and critically injured his foot. “I was scared he was going to lose his foot and was unsure how we were going to manage everything if that was the case,” she says.

When Karter arrived in Children’s Emergency Department, a collaborative crew from Children’s Orthopedic and Plastic and Reconstructive Surgery teams worked together to ensure the best outcome.

Pediatric orthopedic surgeon Brian Hasley, M.D., performed the first operation to stabilize Karter’s fracture and improve the healing potential of his remaining healthy tissue to maximize function of his foot.

From there, plastic and reconstructive surgeon James Vargo, M.D., took over the reconstruction process.

“You never know what to expect walking into cases like this; you need to be prepared for any type of reconstruction,” Dr. Vargo says. “We communicate closely with our orthopedic surgeons. Usually, it involves a phone call and some photos, and then we work together in the operating room to come up with a plan that will optimize outcomes for our patients.”

Since Karter’s injury resulted in multiple severe lacerations on the bottom of his foot and significant tissue loss, along with open fractures, he was susceptible to infection. So Dr. Vargo’s team performed multiple wound washouts and tissue manipulations on his foot.

According to Dr. Vargo, traditional reconstruction would have required a complex flap reconstruction, but the team elected to use an innovative new material on his wound—NovoSorb® BTM (Biologic Temporizing Membrane)—to minimize infection and help Karter’s body heal. Karter was the first patient at Children’s to benefit from this new synthetic product, which enabled him to heal faster with minimal postoperative difficulties.

After 17 surgeries, a 36-night stay in the hospital and ongoing rehabilitation efforts, Karter is back to energetic 4-year-old activities and doing everything he loves—especially fishing. Karter’s incredible resilience has impressed his mom, Marissa. “Nothing can slow this boy down; he surprises us daily,” she says. Marissa, who was able to stay at the Carolyn Scott Rainbow House while Karter was receiving care at Children’s, is thankful for the team effort between multiple services.

“We interacted with almost every department at Children’s—from the Emergency Department when we first arrived, to the surgical staff, security guards, nurses and aids on the Med/Surg floor and even the kitchen and housekeeping staff,” Marissa says. “It felt like we were taken care of, especially being so far from home.”

Although more operations may be needed as his foot continues to grow, Karter has been making strides in physical and occupational therapy, and was recently fitted for a compression garment to help minimize the thickening of his scars and reduce swelling.

From their home in Hastings, Karter’s parents continue to communicate with Dr. Vargo and Dr. Hasley via Children’s Connect—a secure online portal that gives parents and guardians convenient access to their child’s health care information and team. Karter also routinely receives wound care from Debra Reilly, M.D., a plastic and reconstructive surgeon at Children’s.

According to Marissa, Karter hasn’t had any major setbacks in his healing process thanks to the swift decisions of his doctors.

“Everyone worked well together and treated us like family,” Marissa says. “They even made Karter laugh despite how scared he was. Since we were there for 36 days, everyone got to know Karter, and he grew to like everyone. We had a great experience with Children’s.”

Karter
Karter

Mathís’ story: Life-changing progress after craniosynostosis surgery

Kristin and Monét McCullen revel in the indescribable joy that comes with being parents to their 9-year-old daughter, Adrianna, and their 2-year-old twins, son Mathís and daughter Landry.

“The twins love doing everything together,” said Monét. “They have their distinctive personalities. However, when learning to crawl, stand and walk, Mathís was always behind Landry on every milestone. Mathís managed to get there – just not as fast as his twin sister. As parents, we kept reminding ourselves that they are two different humans, and they do everything on their own timelines.”

When Mathís was a little over a year old, the McCullens, who are from Omaha, noticed a ridge on their son’s forehead. It did not seem to bother Mathís, and the McCullens weren’t too concerned. They thought it was a minor imperfection their son was born with, until a family in one of their online parenting groups reached out to them.

“Since we used an anonymous sperm donor to get pregnant, we signed up for a group where you can connect with other siblings who have used the same donor,” said Monét. “We posted a picture of Mathís and Landry, and one of the moms of the siblings messaged me and told me that she noticed Mathís had a small ridge on his forehead. Her son had the same ridge too. It turns out that five of the sibling boys had a noticeable ridge as well. Based off this information, we brought the concern to our pediatrician, Dr. Sahra Niazi, to get it checked out.”

“Monét and I weren’t too concerned about the ridge,” added Kristin. “When we took him for his well checkup with his pediatrician, Dr. Niazi measured his head circumference like she did at every appointment to ensure it was growing properly. Three months after his prior appointment, we noticed Mathís’ head circumference didn’t grow. Dr. Niazi encouraged us to get a second opinion and referred us to Children’s Nebraska.”

Choosing Children’s

In August 2021, Kristin and Monét met with Dr. Oluwaseun (Seun) Adetayo, chief of pediatric plastic surgery, who specializes in pediatric craniofacial surgery. Dr. Adetayo explained that “sutures” are like flexible joints that connect the several bony plates of the skull. The metopic suture connects the two forehead bones and the bridge of the nose. Sutures allow the baby’s head to fit through the birth canal during delivery and the skull to expand as the brain grows.

In Mathís’ case, the two bony plates in front of his skull fused together too early, creating the ridge. Besides the ridge on his forehead, Dr. Adetayo also noticed slight bulging over his ears. She explained that since the metopic suture is the first one to close in the skull, the presence of a metopic ridge does not necessarily mean that a child has metopic craniosynostosis. The latter requires surgery, but the former does not.

After a full examination of Mathís, Dr. Adetayo integrated his history and physical exam findings with his developmental and sibling histories. She also wanted to perform a genetic panel and a CT scan to evaluate the sutures internally, watching for signs that it was metopic craniosynostosis (requiring surgery) versus metopic ridge (no surgery needed). The factor of Mathís’ other donor siblings having metopic ridge also raised a red flag for Dr. Adetayo to ensure there were no other sutures in the skull closing prematurely, because syndromic or genetic craniosynostosis could affect other sutures.

“We were so happy to have wonderful providers who took our concerns seriously,” said Kristin. “They were willing to put in the extra effort to explore Mathís’ condition even if there wasn’t anything glaringly obvious. Although our son was meeting his milestones – though delayed – and his ridge was extremely mild, Dr. Adetayo wanted to confirm that nothing else was wrong with Mathís’ metopic suture or any of his other sutures. She ordered a head scan, and I am so glad that she did.”

The results showed that not only was his metopic suture fused in his forehead, but his sagittal suture that extends from the front of the head towards the back was completely fused.

“Mathís had a condition called sagittal craniosynostosis, a defect that causes the sagittal suture to close earlier than normal, resulting in a head deformity,” explained Dr. Adetayo.

According to Dr. Adetayo, the combination of the conditions limits the skull’s ability to grow. When the bones fuse early, the skull stops growing in those areas, and over time, it puts extra pressure on the brain growth, leading to early developmental delays in otherwise normal children like Mathís. It is even more common in a case like Mathís where the head shape looks normal because there is not enough compensation at other sutures, which is called normocephalic craniosynostosis.

“These are cases that I see that are easily missed because the head shape is not obviously abnormal,” said Dr. Adetayo. “I applaud Mathís’ parents and pediatricians for getting him to our offices. This is why it is so important to have a craniofacial specialist examine such cases.”

“I remember when Dr. Adetayo shared the results of the scan,” said Monét. “She told us that they could see his sagittal completely fused and that he would need surgery. The thought of our son going through this invasive skull reconstruction surgery at such a young age brought me to tears. I was sad, but grateful that we caught this early. We scheduled an appointment to discuss the specifics of the surgery, and we prepared for the worst but hoped for the best. Dr. Adetayo and her team, along with Dr. Arnett Klugh, Children’s chief of pediatric neurosurgery, were both upfront and guided us through every step of the process.”

Collaborating for a life-changing surgery

Just before his second birthday, Mathís had skull surgery on Nov. 3, 2021. The six-hour operation involved making an incision along his scalp, opening up and removing the top half of his skull and separating the skull from the dura and opening to his brain. After removing the affected bone, Dr. Klugh and Dr. Adetayo reshaped and replaced the bone to improve Mathís’ head shape and allow more room for his growing brain to expand normally.

“It is a scary thing for parents when a child must undergo surgery. We did our best to walk the family through the process each step of the way, and they were really brave,” said Dr. Adetayo. “Success takes a team, and we are excited about the team we have assembled at Children’s to take care of children like Mathís. Ranging from our front desk team, nursing staff, surgery schedulers and advanced practice providers, our goal is to provide each child with top-notch care with compassion and innovation.”

“It’s a big deal, removing your 1-year-old child’s skull and literally getting down to the brain,” said Kristin. “After his surgery, Mathís went to the Pediatric Intensive Care Unit to recover. When he heard our voices, he opened his eyes a little. His entire head was completely wrapped. It was hard seeing him in that state, but we were glad that he was doing well after his surgery and got to go home.”

Seven months after his procedure, Mathís is doing remarkably well. Soon after surgery, Kristin and Monét noticed a big difference in his language and speech. Mathís was talking and eating better, and he carried himself more confidently. His curly hair grew back after the surgeons used a zig zag cut to help camouflage the scalp incision, which is now barely visible. For the McCullens, they are thankful to the wonderful team who took exceptional care of them and their son.

“Dr. Adetayo and Dr. Klugh took every moment and opportunity to educate us, which went a long way in building our trust and confidence in them,” said the McCullens. “We could tell how much Dr. Adetayo was plugged into the latest research on our son’s condition. That cemented our final decision to go to Children’s for the procedure, as we had also consulted with another hospital for a second opinion.

“The nurses here were so accommodating and attuned to the process and met our needs along the way. The team made it clear to us that their focus was not just taking care of Mathís, but also taking care of our family. Our confidence in the care we received could not have been higher. We are their biggest fans. In my mind, we could have gone across the world, but the absolute best care team for our son was just down the street.”

Click here to learn more about Children’s Plastic & Reconstructive Surgery Team.

Plastic & Reconstructive Surgery

At Children’s Nebraska, we understand that birth defects or traumas can be difficult and overwhelming — especially when they are visible or affect a child’s development. Our specialists are here to help children ages 0 to 21 through all of their plastic surgery needs.

Learn More

A new beginning: Jesse’s cleft lip and palate success story

When Jessica first laid eyes on her son, Jesse, he was the most beautiful baby in the world — but she knew he would face some challenges. Jesse was born with a bilateral cleft lip and palate, with a split in his upper lip and a palate (roof of mouth) that did not fuse properly during development.

“His facial anomalies never changed the way I felt about him,” said Jessica. “Jesse stole my heart from the moment he was born – all 9 pounds of him. He was precious and perfect in every way. When he made his grand debut on Aug. 1, 2020, I just couldn’t wait to be his mommy. I couldn’t wait to love on him and give him the best possible life any mother wants for their child.”

About 1 in every 1,600 babies is born with cleft lip and palate in the United States, according to the Centers for Disease Control and Prevention (CDC). If these conditions are left untreated, children may experience feeding and speech development difficulties, ear infections, hearing loss and dental problems. Luckily, the conditions can be treated with surgery.

One month after Jesse was born, Jessica was referred to Children’s Nebraska, where she met Dr. Oluwaseun Adetayo, Chief of Pediatric Plastic Surgery, for the first time. Dr. Adetayo discussed how she and the multidisciplinary craniofacial team would help restore function to Jesse’s lips and mouth, providing a more typical physical appearance.

“I was nervous about my baby going through his first surgery,” said Jessica. “But Dr. Adetayo had this way of calming my nerves and reassured me that everything would be okay. She broke things down in simple terms for me to understand and even drew helpful diagrams for me. Dr. Adetayo put all of my fears at ease and explained to me step-by-step how she would repair Jesse’s facial anomalies. From the moment I met her, I knew Jesse would be in good hands.”

Changing Jesse’s life, one surgery at a time

In December 2020, 4-month-old Jesse had surgery to correct his cleft lip. During this delicate procedure, Dr. Adetayo closed the opening in Jesse’s cleft lip and performed cleft rhinoplasty to reshape his nose so he could breathe better. Often, patients with a similar condition have an uneven nasal appearance due to their cleft lip and palate and need to undergo nasal reconstruction surgery.

“I was amazed when I saw Jesse after surgery,” said Jessica. “Dr. Adetayo and her team did a beautiful job. He looked different, and you couldn’t tell he had the deformity. Jesse spent a few days in the hospital until he was able to eat. Since he couldn’t suck because of his cleft palate, I fed Jesse with a big syringe.”

Shortly after celebrating his first birthday, Jesse was ready for his second surgery to repair his cleft palate. Cleft palate repairs are done when the child is older, between 9 months and 1 year old, to allow the palate to change as the baby grows and prevent further speech problems as the child develops. Dr. Adetayo also wanted Jesse to enjoy his first birthday cake and his favorite foods before his next surgery.

As with the first surgery, Dr. Adetayo drew a diagram for Jessica of what the surgery would look like before and after. In September 2021, Dr. Adetayo performed Jesse’s cleft palate repair. She closed the opening in the roof of his mouth, rearranged and repaired the muscles of the soft palate and made two incisions on each side of the palate to ease tension.

“Our plastic surgery team understands that birth anomalies can be difficult and overwhelming, especially when they are visible or affect a child’s development,” said Dr. Adetayo. “Our team is dedicated to helping children like Jesse function at their highest level. Jesse’s lip and palate repairs will improve his ability to eat, speak, hear and breathe. He can do the things now that any other child can do.”

To promote healing, Jesse had to wear arm splints to keep him from putting his fingers and sharp, pointy objects in his mouth, which could damage the sensitive tissues in his palate. Now that his palate has healed completely, Jesse is a happy baby who loves to eat and talk.

“He is lovable and is the perfect addition to our family,” said Jessica. “He loves holding on to me and vies for all of my affection all the time. I wouldn’t have it any other way. His siblings adore him as well. While it has been a trying journey for our family, one thing that helped me a lot was joining support groups and engaging with other families of children with cleft lip and palate. It was great to share stories, listen to each other and have someone to lean on. I am thankful to Dr. Adetayo and her team for taking great care of Jesse and for the positive changes they made in my baby’s life. I see a bright future ahead of him.”

Click here to learn more about Children’s Plastic & Reconstructive Surgery team and the Craniofacial Center.

Plastic & Reconstructive Surgery

At Children’s Nebraska, we understand that birth defects or traumas can be difficult and overwhelming — especially when they are visible or affect a child’s development. Our specialists are here to help children ages 0 to 21 through all of their plastic surgery needs.

Learn More

“Counting our blessings”: Eva’s miraculous heart journey after multiple surgeries

Monae and Phillip Johnson dreamed of having children. Eleven years ago, they welcomed their beautiful daughter, Simone. During the pregnancy, Monae developed lupus, an autoimmune condition that also affected the child’s heart, leading Monae to wonder what her chances were of developing the condition again in future pregnancies.

Monae and Phillip wanted to give Simone a sibling, and after multiple attempts to have another baby – and enduring a miscarriage along the way – the Johnsons learned they were expecting again.

“We were surprised, happy, and nervous at the same time,” said Monae. “When I was nine weeks along, I worked with Dr. Michael Barsoom, the same high-risk OB-GYN who delivered Simone. Because of my prior experience, and since I had the tendency of developing lupus during pregnancy, our baby, Eva, and I were monitored closely with weekly ultrasounds.”

At 20 weeks, Eva’s heart went from normal to second-degree heart block to complete heart block, prompting Children’s Cardiology team to recommend fetal heart ultrasounds every week. Fetal cardiologist Dr. Jennifer Winters was assigned to Eva’s case, reading the ultrasounds, and Dr. Jeffrey Robinson became her primary cardiologist.

Welcoming Baby Eva into the World

On Sept. 23, 2020, the Johnsons welcomed Eva into the world. She weighed 4 pounds, 12 ounces and was delivered via C-section at 36 weeks.

Later that evening, Eva — at less than one day old — had her first heart surgery. Her cardiac surgeon installed temporary pacemaker wires since Eva wasn’t big enough for a permanent pacemaker.

Setbacks along the way required additional surgeries. Finally, when Eva was 2 months old, she reached her goal weight of 6.6 pounds and underwent another surgery in November to receive her permanent pacemaker.

“Everything was going well,” said Monae. “She wasn’t on a ventilator, and she wore clothes for the first time, which was an exciting ‘normal baby’ moment for us. Her doctors even told us that she was on her pathway home, which was very reassuring.

“Then, as I was changing my daughter’s diaper, I noticed drainage from her sternal incision. Her pacemaker got infected, and she was heading back to surgery. This was the ultimate high to low for our family. We broke down many times. We put our hope in God and in the hands of her medical team.”

More Surgeries – and a different approach

On Jan. 4, 2021, Dr. Ali Ibrahimiye, a pediatric cardiothoracic surgeon, and Dr. Oluwaseun Adetayo, Children’s Division Chief of Plastic Surgery, were involved in Eva’s fifth surgery, in which they cleaned up the incision and began investigative surgery to identify the cause of the recurring infections. Following the procedure, it was decided that the permanent pacemaker would need to be removed. It was left in place and gradually turned down over the next couple of days; however, Eva started to show signs that she couldn’t tolerate the low heart rate, so her pacemaker was turned on again.

Eva was then taken back for her sixth surgery. The permanent pacemaker and leads connected to the heart were removed, and new temporary pacemaker wires were placed and turned on again. This allowed the infected “pocket” to heal so the Cardiothoracic Surgery team could safely place a permanent pacemaker later without ongoing infection risk.

Though Eva was back to square one – wearing a temporary pacemaker again until she was ready for a permanent one – Dr. Ibrahimiye and Dr. Adetayo learned what was causing the multiple infections. They noticed the wires from the permanent pacemaker to the heart had worked their way up toward the skin. Eva’s body did not respond well to the sutures, which also contributed to the recurring infection. With the mystery solved, Dr. Ibrahimiye and Dr. Adetayo worked together to plan and perform Eva’s permanent pacemaker surgery.

“We took a different approach to this surgery,” said Dr. Ibrahimiye. “We first made a small incision in the abdomen to insert the pacemaker leads and connect it to the outside surface of the heart. The device was placed on the right side of Eva’s abdomen because there was too much scar tissue on her left side from her previous surgery. Together with the Plastic Surgery team, we elevated a safe, deep place of muscle flap, so we were able to create a new pocket of muscle to secure the pacemaker.”

“When I opened Eva’s sternal wound, I noticed several of her muscles were no longer properly attached to the sternum or her upper abdomen,” said Dr. Adetayo. “Due to the infection, the muscles had retracted, and the scar had shortened, similar to when anyone’s body tries to heal with a scar. In addition, her tissues were very stiff with poor blood flow because it had been infected so many times.”

The goal of surgery was two-fold: fix the recurrent problems Eva had experienced over several months and prevent subsequent reoccurrence. The scarred and stiff muscles were repositioned and reconstructed in the chest and abdomen to restore both function and appearance in their normal anatomic position. For a female patient, the team must consider breast development later in life, so the approach for closing the chest with muscle flaps is done with meticulous attention to detail. The Plastic Surgery team took several layers of tissue and closed each incision securely to reconstruct Eva’s chest wall and close her abdomen.

“I appreciated the strong collaboration of the Plastic Surgery and Cardiothoracic Surgery teams to give Eva the best outcome,” added Dr. Adetayo. “Multidisciplinary specialty collaborations are crucial in complex patients to help improve their outcomes, and we were able to accomplish this for Eva by working together as a team.”

Bringing Eva Home

After a month of considerable progress post-surgery, 7-month-old Eva was ready to join her sister, Simone, at home. Monae says she is grateful to Eva’s entire care team, spanning Pulmonology, Gastroenterology, Plastics, Cardiology, Physical and Occupational Therapy, Endocrinology and Wound Care, for taking great care of her daughter and providing a support system for their family.

“The care team at Children’s was a saving grace for me,” said Monae. “The love they had for Eva melted our hearts. Dr. Adetayo was a ray of sunshine, and she did an amazing job reconstructing Eva’s abdominal muscles so they can function properly. As for Dr. Ibrahimiye, he was a gentle spirit and so calm and collected and gave me the confidence to know Eva was in good hands with the medical and surgical teams. Dr. Barsoom and the Wound Care team were great to work with, too. Besides the outpouring of support from her care team, our faith and hope in God helped us stay strong for our daughter.”

Plastic & Reconstructive Surgery

At Children’s Nebraska, we understand that birth defects or traumas can be difficult and overwhelming — especially when they are visible or affect a child’s development. Our specialists are here to help children ages 0 to 21 through all of their plastic surgery needs.

Learn More

Cardiology & Heart Surgery

From minor murmurs to major defects, disorders, and diseases, Children’s Nebraska offers comprehensive cardiac care programs for both children and adults with congenital heart issues.

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First-of-its-kind Surgery at Children’s Provides Hope, Seizure Relief

Jonathan’s Story

Waiting on a miracle.

That’s how Omaha mother, Neysi Mendez-Tadeo, described the last eight years as her son battled debilitating seizures. Diagnosed with Rasmussen’s Encephalitis, a rare neurological condition, 15-year-old Jonathan had regressed to a state of constant twitching on his right side.

Then, in the summer of 2021, pediatric neurologist Sookyong Koh, M.D., Ph.D. joined Children’s Nebraska as Division Chief of Neurology. Months later, she was joined by pediatric neurosurgeon Afshin Salehi, M.D., M.S. Through collaboration, Children’s pediatric neurosciences team determined surgical intervention was the only option for Jonathan, and it would require a procedure believed to be the first of its kind in the state of Nebraska.

“The surgery we did is called a functional hemispherotomy. Essentially, it entails disconnecting the involved hemisphere from the rest of the brain,” explained Dr. Salehi. “The amazing thing was that, on the day of surgery, Jonathan went to sleep seizing and when he woke up from surgery, he’s not seized since then. It was kind of like a light switch.”

Not only did the seizures stop, but in the months that followed, Jonathan regained some function on the right side of his body, and even surprised the neurosciences team by walking with limited assistance.

“It’s been said for Rasmussen’s Encephalitis that if you cannot walk before surgery, you cannot walk after surgery, “ Dr. Koh said. “For Jonathan, not being able to walk before, but being able to walk following surgery after half of his brain has been disconnected, is really a miracle.”

Neurology

At Children’s Nebraska, we provide the most comprehensive, personalized, continuum of care in the region to treat complex pediatric neurological conditions.
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Innovation Improving the Lives of Kids with Epilepsy

Teddy’s Story

In April 2019, at almost 17 months old, Teddy Bronson experienced what would be the first of countless seizures.

“I went to get him out of bed, and it was like the lights were on, but nobody was home,” says his mother, Liz Bronson.

Liz and her husband Matt would later learn their son suffers from DUP15Q syndrome—a neurodevelopmental disorder which often results in epilepsy, autism and intellectual disabilities.

In early 2022 at Children’s Nebraska, Teddy received a life-changing, leading-edge procedure designed to treat pediatric patients who suffer from a genetically associated form of epilepsy.

Prior to surgery, Teddy was experiencing up to 50 seizures a day; some lasted minutes while others came as a cluster of spasms. When medications and other treatments failed to alleviate Teddy’s seizures, his parents decided to give surgery a chance.

Children’s multidisciplinary epilepsy team— led by Division Chief of Neurosurgery Arnett Klugh, III, M.D., Division Chief of Pediatric Neurology Sookyong Koh, M.D., Ph.D., and pediatric neurosurgeon Afshin Salehi, M.D., M.S.—worked in collaboration to provide this groundbreaking surgery for Teddy.

Dr. Salehi implanted an RNS® system device in the bilateral thalami, which acts like a pacemaker for the brain by monitoring brain waves and responding to seizure activity. Using the guidance of the ROSA® Robot, Children’s robotic operating surgical assistant, this surgery was the first pediatric procedure of its kind in Nebraska.

As for Teddy, he was discharged the day after the device was implanted. Following surgery, Children’s epileptologist, Dr. Koh, continues to fine-tune the setting on the RNS® system device, which has already resulted in a significant reduction in seizure frequency for Teddy.

Since surgery, Teddy has had just eight seizures—one of which was captured on his room monitor that showed the device stopping his seizure. According to his mother, Liz, Teddy has had better and more efficient sleep since surgery, which is a game changer for both him and his family.

“We continue to work hard to further push the boundaries for a comprehensive treatment plan so our patients don’t have to leave Nebraska for neurosurgical treatments,” Dr. Salehi says.

Liz, a nurse practitioner at Children’s, first met Dr. Salehi while working a night shift. She feels a sense of relief that her son is in the hands of her trusted colleagues.

“Offering this kind of innovative epilepsy surgery at Children’s is something that is going to impact lives and our community for a very long time,” Liz says. “To know that Teddy’s surgery has set forth a path for surgical intervention for epilepsy at Children’s— that’s priceless.”

Neurosurgery

At Children’s Nebraska, our neurosurgery team offers advanced surgical treatments to children with disorders or injuries of the brain, spinal cord, and peripheral nerve system (the nerves outside of the brain and spine).

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Sophia

Sophia’s Story: Small but Mighty Micro-Preemie Overcomes Obstacles

With two young boys, ages 4 and 2, Diana Gallegos and her husband learned they were expecting yet again; and this time, it was a baby girl. They were overjoyed about expanding their family. Diana’s first two pregnancies were full-term with no issues, and there was no indication that this third pregnancy would be any different.

During the second trimester, things began to change. She experienced back pain, kidney stones and hair loss. Then, when she was 23 weeks, her water broke. Diana and her husband rushed to the hospital. She was monitored as high risk and placed on bedrest.

Two weeks later, she became dilated to three centimeters, which cued her doctor to intervene. Diana was taken into the labor and delivery room for a C-section. The risks were very real for Diana and her family, as only 75 to 85% of babies born at 25 weeks survive. Diana also faced a very serious risk to her health while giving birth.

“I was really scared. They gave me the epidural, but I was still feeling the pain and screaming. So, they put me to sleep during the delivery because I was in so much pain,” said Diana. “I woke up in the recovery room, and I was asking, ‘Where is my baby? How is she?’ And they wouldn’t give me details until the doctor came. When the doctor showed up, she said that I had lost lots of blood and that Sophia was doing good… but not too good.”

Diana was able to finally see her baby girl for the first time the next morning, but nothing could prepare her for just how small her micro-preemie baby really was.

“She had all these monitors. It was scary to see all that, and she was so tiny,” said Diana. “It was so emotional. I had never thought that I would have a premature baby. It never had even crossed my mind. In my family and my partner’s family, there has never been a premature baby. So, it was a whole new experience.”

Sophia was born February 6, 2021, weighing just one pound, six ounces. She still faced many hurdles ahead.

Issues included intrauterine Growth Restriction (or failing to grow during pregnancy), bronchopulmonary dysplasia (a chronic lung disease that causes long-term breathing problems in premature babies), a subglottic cyst (a fluid-filled lesion in the lower part of the larynx below the vocal cords), difficulties with aspiration and more.

“The first few weeks I couldn’t hold her. I could only touch her, but just for very short periods of time. So, we would just stay there looking at her and just amazed that she was still living,” said Diana.

Sophia also began getting mysterious fevers, which delayed a hospital transfer. When she was two months old, she was able to transfer to the Neonatal Intensive Care Unit at Children’s Hospital & Medical Center in Omaha. As the only Level IV NICU in Nebraska, Children’s offers the most advanced level of neonatal care available. Their highly specialized, expert medical professionals treat nearly every condition a newborn baby may have.

“They told us they would do everything they could to keep her alive. She was losing so much blood, and so they were giving her blood transfusions. And then she had issues with her heart, kidney and liver. So, they were waiting to see how everything came out on their tests,” remembered Diana.

Fortunately, many of the issues resolved on their own as Sophia grew. Then came the moment when Diana could finally hold her baby girl in her arms for the very first time.

“I was so scared to hold her with the breathing tube and all the IVs she had. I just had to be very careful. She was so fragile,” said Diana. “But holding her, skin-to-skin, was the best feeling ever.”

Doctors determined that Sophia had issues with her vocal cords, and. because she was aspirating quite a bit, they decided she needed a G-tube placed to help her get proper nutrition.

“Over the last couple months in the NICU, she began to gradually improve, and she was starting to come off the oxygen. She started feeding with formula, but we had to be very careful how it was done since she had significant issues with her vocal cords,” said Diana.

Sophia was five months old when she was ready to go home. This milestone came only after Diana received extensive training on proper outpatient care for a micro-preemie baby.

“In the last couple weeks, I started working with the feeding team, learning how to make the formula the safest way for her to drink it,” said Diana.

Diana spent the last couple nights in the hospital practicing with assistance from nurses before she was given the clear to take Sophia home.

Now, in November 2021, during National Prematurity Awareness Month, Sophia is nine months old—happy, healthy and thriving. She’s expected to finally be taken off oxygen after a sleep study later this month. Diana said there do not seem to be any long-term issues, thanks to the medical team who helped her micro-preemie baby grow stronger. Sophia will be visiting the feeding therapy team in the outpatient clinic every few weeks to help her learn to eat properly and will follow up with the cardiology team and respiratory team to make sure she’s on track in those areas as well.

“I want to say thank you for everything the doctors and nurses did for my baby. The care was excellent,” said Diana. “There’s no other place I would rather her be than at Children’s.”

Sophia NICU

Sophia NICU

Sophia NICU

Sophia NICU

Lily

Lily’s Story: Finding the Fun, Even in the Hardest of Times

It was Thanksgiving and the start of a journey Brittany and Cameron never would have imagined. When 18-month-old Lily Jackowiak didn’t respond to a course of antibiotics, it was the first clue for her parents that something just wasn’t right with their only child. And then, when she developed unexplained bruises on her legs and became extremely lethargic, that’s when they knew something was really wrong. Taking the advice of her pediatrician, Cameron and Brittany rushed their baby girl to Children’s Hospital & Medical Center in Omaha, where they received an unthinkable diagnosis: Lily had leukemia.

“I couldn’t even wrap my head around it. I never in a million years expected anything like this,” said Cameron. “Lots of things started happening right away so it was good to have that constant stream of people that first night, getting things rolling, because it kept my mind on something other than the devastating news.”

The expert oncology team at Children’s wasted no time in getting treatment started for Lily. Within the first 24 hours, she received several infusions of blood and platelets, followed by surgery to get her PICC line placed where she would start receiving all her medicines.

It was December 2019 and the beginning of a cancer journey that would take the Jackowiak family on a series of twists and turns.

After spending the holidays in the hospital, Lily was discharged but would be readmitted within 24 hours on New Year’s Day with a diagnosis of respiratory syncytial virus (RSV). Children’s team decided to keep her in the hospital for her induction phase, the period cancer patients go through before receiving chemotherapy and radiation. Going to the doctor was never a favorite experience for Lily, but thanks to the specialized care she received at Children’s, she became more comfortable in the hospital setting.

“The team did such a great job of explaining to Lily what was happening to her – to the point that she loves to play doctor now. She even likes to tell her doctors how to do their jobs…look in my ears first, not my mouth, she will tell them,” Brittany said with a chuckle.

Lily moved from induction to the next course of treatment in early 2020, and then spent the rest of 2020 and now, into 2021, going through multiple treatment phases. For two phases of her treatment, Lily was part of a trial study called the “blended study,” where she would wear a special backpack– a slow drip form of chemotherapy designed to help kids from relapsing. One of the first children in Nebraska to be part of this new study, Lily has worn the backpack twice as part of her care plan. The family even managed to have a little fun with it, gluing big googly eyes on it before Lily’s appointments.

Keeping that element of fun constant throughout Lily’s leukemia battle has been important to Cameron and Brittany. They would all three show up for Lily’s appointments with matching t-shirts and masks during the pandemic. And they integrated “theme days” into their routines, centered around tie-dye, Disney, dinosaurs, Baby Shark and Daniel Tiger. These distractions helped the Jackowiaks keep focused on something other than spinal taps and infusions.

In October of 2020, Lily entered the maintenance stage of treatment. Cameron and Brittany breathed a sigh of relief. But on Jan. 1, 2021, Lily developed a limp to the point where she could not walk. Doctors determined Lily had osteopenia, a condition that sometimes occurs as a result of chemotherapy and steroids. In February of that same year, she woke up with stress fractures in her feet and ended up having to wear a tiny pink cast to correct it – the perfect color for a little girl full of sweetness and sass.

After numerous trips to the ER, months in the hospital and several ups and towns, Lily’s family can finally see a light at the end of the tunnel. Today, Lily is 3 years old and started preschool this fall. An opinionated little lady, she loves being a kid. The whole family looks forward to the end of her treatment in February of 2022.

As for Cameron and Brittany, they feel blessed to be surrounded by the team at Children’s throughout this journey. “Everyone here has opened our eyes about how much they truly care about their patients and the families. I honestly don’t know what we would do without them—from Dr. Ford, our main oncologist to Jenilee Vogel, our nurse practitioner, who has been there through so much with us and answered every question. The nursing staff, the infusion staff and the clinic staff, they’re all wonderful people; we could not have done this without them. They all have a special place in their hearts for these kids.”

Axton

Axton’s Story: In the Fight of His Life

What started as a suspected case of pneumonia for little Axton Myers turned out to be his parents’ worst nightmare. The spunky 2-year-old with boundless energy, who loves puzzles, reading, and playing with his grandfather, began having trouble breathing. After multiple rounds of tests, scans and X-rays, doctors at Children’s Hospital & Medical Center in Omaha discovered that Axton had developed a mass of cancer cells that were pressing on his airway and windpipe. Sarah Myers, Axton’s mother, vividly remembers holding Axton on her lap when doctors explained that her little boy, her only child, had T-cell leukemia.

The next thing Sarah and her husband, Jason, remember is Axton being whisked off to the Pediatric Intensive Care Unit (PICU) so doctors could immediately start working on dissolving Axton’s mass. While he was there, he had a central line placed and underwent a procedure called apheresis, where a patient’s blood is essentially “cleaned.”
“It was such a scary experience, but we knew Axton was in the best of hands,” said Sarah. “The team was patient with us, explaining everything that was happening and why, and willing to answer our questions, even if we asked them 100 times.”

Axton started chemotherapy on his second day in the PICU and entered into what is referred to as the induction period, a 10 to 12 month period of procedures cancer patients go through before entering into a maintenance phase. He was in the hospital for almost an entire month and then was able to go home.
After the first month of chemotherapy, Sarah received the wonderful news that Axton was in remission, something that can sometimes take several months. Because Axton was doing so well with his treatment, he was saved from having to receive any radiation.

“The whole process has been extremely regimented, and Children’s made it so easy by mapping it out for us,” said Sarah. “In addition to providing a binder of detailed materials outlining what to expect and when, Children’s also provided access to an educator, who made everything a little less overwhelming.”

Today, almost two years into his journey, Axton is now in the maintenance phase and his treatments are not as intense. He will continue his treatments until February 2023.

“He has been a real trooper through it all and doesn’t mind going to the hospital for his routine spinal taps and infusions,” said Sarah. “According to his doctor, he is doing amazingly well and getting through the treatments with ‘flying colors.’ His dad and I are so grateful.”

Sarah said she’s also thankful for the compassion and care shown to her family at Children’s.

“I’ve never been in a situation where health care was so incredibly loving and comfortable to be around. And the team is fighting with us. I’ve never experienced that before. I didn’t know that there was such a thing until I was put into this situation. And when I say my team, it warms my heart because they have been and continue to be with us every step of the way,” she said. “Everyone we encountered, from the oncologists, nurses, social workers, child life specialists and the chaplains, has been outstanding, and we are so fortunate to have this type of support network.”

When asked about advice she would give other parents going through a similar cancer journey, Sarah says to “accept help” and, above all else, “stay positive for both you and your child.”

Nola Cancer

Nola Cancer

Nola Cancer Story

Nola Cancer Story

Katie’s Story

Nationally recognized Pediatric Intensive Care Unit expands into Hubbard Center, giving more children access to high-acuity critical care

It was November 2019 and the Fangman family had just finished Thanksgiving dinner with their six children. Their youngest, Katie, was an active toddler and had been pretty healthy for her first 20 months of life. That day, Nicole, a former critical care nurse, and Ben, a physician, noticed Katie was a little tired, had a runny nose and a small cough, but didn’t think too much of it.

“Being a doctor and a nurse, we are a tiny bit overprotective,” Nicole laughs. “I had Ben listen to Katie’s lungs before putting her down to bed that night and he didn’t notice anything unusual.”

The next morning as Ben walked into Katie’s room to get her up for the day, he didn’t realize his whole life was about to change.

Ben looked down into the crib and Katie was lethargic and unresponsive.

“We didn’t know what was going on,” explains Nicole.  “I thought in my head, did she eat something, did she get poisoned somehow? We just had no idea what was going on. It was a nightmare, and we were so scared.”

Nicole and Ben immediately scooped her up and knew they needed to head to the Emergency Department at Children’s Nebraska, which was thankfully less than a 15-minute drive away.

Upon arriving to the hospital, Katie’s oxygen levels were dangerously low. Children’s team took a chest X-ray which showed she had a bad pneumonia and acute respiratory distress syndrome. Katie was immediately given oxygen.

“Everything happened so fast. They put her on the strongest oxygen possible through a mask,” remembers Nicole. “Then, before you knew it, we were in the Pediatric Intensive Care Unit (PICU). We just didn’t know what on earth was going on.”

Katie’s case baffled the doctors, too, since she was previously healthy. They began running tests to try to understand what was going on, and eventually had to intubate Katie due to her needing more and more oxygen.

Soon after, bloodwork came back and revealed Katie had respiratory syncytial virus (RSV) and pneumonia, which had been setting in for several weeks. The doctors concurred that the combination of these two diagnoses must have taken out her immune system overnight, causing her to become so sick.

“We were so scared and were worried they wouldn’t be able to find a way to treat her,” says Nicole. “The doctors were quickly trying to figure out the next steps and put a plan together for Katie because she was going downhill quickly.”

Soon, the topic of extracorporeal membrane oxygenation (ECMO)—the most advanced form of life support—was brought up. ECMO is commonly used for heart patients, but the team discussed putting Katie on a special kind of ECMO called Veno-Venous (VV) ECMO, specifically for respiratory patients. For Katie, ECMO would be used to bypass her lungs and oxygenate her blood outside of her body so her lungs could recover. Because Katie was at Children’s, a team was immediately able to be assembled to begin treatment.

“All I remember was as soon as ECMO was mentioned, there was a huge team of people at the bedside within about five minutes. It was amazing to me how quickly the team was able to come together,” remembers Nicole.

Children’s Nebraska is the only children’s hospital in the region to offer ECMO for infants, children and teens, and specialize in this treatment for critically ill pediatric patients. Katie had come to the right place. Children’s PICU is designated as a Center of Excellence in life support, with processes, procedures and systems in place that promote excellence and exceptional care in providing ECMO to young patients. The team also collaborates with professional organizations like Extracorporeal Life Support Organization (ELSO), an international group of professionals who share data and information about ECMO use.

Katie remained on ECMO for 53 days, the longest any patient has stayed on ECMO at Children’s.

“The treatment was touch and go for a while. I remember just holding Katie’s hand and praying that it would work,” says Nicole. “Katie was on heavy sedatives and would get chest X-rays every day. It wasn’t until right after the new year that we would have a huge break in Katie’s treatment.”

Katie would regularly receive chest X-rays, but in January 2020, she received a CT scan that revealed large abscesses from her pneumonia in her lungs. She was put on antibiotics and the nurses would suction her every day. One day, a nurse was suctioning her, and miraculously, a large clot came out.

“That was our turning point!” explains Nicole. “It was amazing. Her airways opened and her lungs started moving air. At that point, things were a lot better, and we were able to take her off ECMO. I finally got to hold her for the first time after two months and held her for eight straight hours.”

Although there were still a few setbacks, Katie was eventually able to move down to the step-down unit and start weaning off the medications and begin rehab. Her brothers and sisters even got to come visit her in February to celebrate her second birthday.

“It was amazing to watch her brothers and sisters interact with her. She had this balloon, and she would hit each of them on the head with it when we said their name,” Nicole explains. “It was during this exercise that we knew Katie had full brain function because she was able to remember everyone’s names. I was so relieved!”

Katie did have to receive a tracheotomy after coming off ECMO which helped her to be able to move around even with the ventilator. She did so well at rehab that her nurses called her “the miracle child,” and within a couple of months and intense rehab, Katie was even able to get the trach out.

“The doctors told me there was something very special about her recovery,” says Nicole. “I Can’t begin to thank the doctors and nurses in the PICU enough for everything they did to get Katie home. They took care of her, and they took care of us. They just didn’t miss a beat, and it was amazing. They are special people and truly do it for the kids.”

Katie was treated in the current PICU at Children’s, but in late August 2021, a newly renovated 32-bed PICU will open in the Hubbard Center for Children. The same highly trained and specialized staff will be on the unit, but the space will feature rooms with more natural light and larger sleeping areas for parents who are staying overnight.

Children’s PICU offers a full range of pediatric medical and surgical specialists, in departments from neurology to cardiology, and is continuously staffed by physicians, nurses and other providers who are trained in the care of children with critical illness and injury. Compared to other PICUs of similar size across the country, the patient outcomes are among the best. Children’s also has a Critical Care Transport Team with specially trained emergency medical technicians and registered nurses who transport critically ill patients up around the region and across the country. With the addition of the PICU in the Hubbard Center, Children’s will have one of the largest PICU bed counts in the region.

“I am so impressed with what I see happening at The Hubbard Center. It is going to be so nice to have a building dedicated to the PICU,” says Nicole. “It is going to be a game changer to have everything together and have all the facilities right there like the operating rooms, testing areas and radiology. I love the design and love how modern and fresh everything looks.”

Today, Katie is a thriving 3-year-old and not having any issues after being in the hospital for all those months.

“She is such a girly girl. She loves Barbies and Peppa Pig and dressing up,” said Nicole. “She loves running after her white fluffy dog and doing all kinds of crafts and painting. I am so glad we have our little girl back. If it wasn’t for our wonderful nurses, Hannah, Rachael and Ashley, and the amazing doctors like Dr. Ortmann, Dr. Solomon and Dr. Norton, I honestly don’t know if she would be here today. I just feel so blessed to be in a state that has a hospital like Children’s that has the capabilities to take care of complex patients like Katie, and I look forward to seeing what the Hubbard Center will bring to our city.”

Katie PICU

Katie PICU

Katie PICU

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