Children's Center Patient Stories
Ella Kate Shuler
At the age of 31, Jessie Shuler was preparing for the birth of her first child. Despite being classified as a high-risk pregnancy due to antiphospholipid syndrome -- an autoimmune disease which causes improper blood flow and can cause development problems or even miscarriage -- Jessie remained calm and filled her days with preparing the nursery, working, spending time with family and reading all about ‘what to expect.’ However, no amount of preparation could have prepared her for what was to come.
On April 28, at just 26 weeks in her pregnancy, Jessie was at a routine appointment with Physician Partners – Maternal Fetal Medicine Specialists.
Specializing in the care of both high and lower-risk pregnancies, maternal fetal medicine specialists screen, test and monitor baby’s developments while working to manage complications and provide patients with the critical support needed during their pregnancy.
During her appointment, Jessie noticed something different she had never experienced before. The nurse’s casual demeanor had suddenly shifted.
“Every appointment is the same,” said Jessie. “The nurse does an ultrasound while we chat about updates, she reviews the screen, points out different developments, prints photos and gives them to me before the doctor comes in. This appointment I knew something was up. Instead of handing me the photos the nurse told me she had found something and excused herself from the room. Once the doctor entered the room I started to feel a familiar worry.”
Exactly one month prior, Jessie and her husband, Garet had received the news that her sister-in-law had lost her baby. Just five weeks behind Jessie’s due date, her sister-in-law’s experience and loss of her nephew was unbearable. The strength of their family carried them through the coming month but the fear and feeling of worry quickly returned when Jessie got the news she had dreaded.
William Dobak, DO, at Physician Partners – Maternal Fetal Medicine Specialists met with Jessie and explained their findings. Ella Kate’s heart, although healthy, was not getting the proper blood flow it needed to her umbilical cord. His recommendation was to admit Jessie to Tallahassee Memorial Hospital to get steroids which would help to mature her lungs.
Just 12 hours later Jessie was informed Ella Kate’s oxygen levels had begun to decrease. The possibility of having to deliver early was now a reality.
“An ARNP from the Tallahassee Memorial Newborn Intensive Care Unit (NICU) came down and met with us to explain what we could expect when delivering this early. I braced myself for the understanding that her skin would be thin enough to see through, she would probably fit in my hand, I wouldn’t be able to be with her for the first few hours after delivery and she would need around the clock care for months.”
Fewer than one percent of babies will be born before 28 weeks. In Ella Kate’s situation, she was one of 28 “micro preemie” babies to be born at Tallahassee Memorial HealthCare in 2017.
“All babies born at 26 weeks gestation will need help accomplishing the things they will be able to do on their own in a few short weeks,” said Judith Danford, BSN, RNC-NIC, Nurse Manager, NICU. “It doesn’t mean they are sick, it just means they are early.”
The NICU cares for over 600 babies each year who require specialized care. Whether they arrived too early or have health problems at birth the dedicated team of neonatologists and specially educated nurses provide the highest level of care at the region’s only NICU.
“Ella Kate made up her mind that she wanted to enter this world early and despite the little amount of time we had to prepare, the staff at Tallahassee Memorial made sure we were informed, comfortable and as ready as we could be,” said Jessie. “They were really so kind to us.”
Once Jessie and her husband, Garet were prepped, their doctor, Adrienne George, MD, OBGYN at Tallahassee Memorial HealthCare decided to schedule her C-section two days later on April 20th.
“Being that I wasn’t in labor, I was really nervous. I had some time to prepare but I had never done this before so having the support from the doctor, nurses and my family was so important along with my faith. Dr. George, Debbie White, ARNP and all of the nurses were so calm and helped set the tone for the room.”
At 1:12 pm on April 20, Ella Kate Shuler entered the world weighing just over one pound ready to give it her all.
“Debbie White who helped Dr. George in the delivery said Ella Kate came out kicking. All of the nurses assured me she was going to be a little fighter,” said Jessie.
Immediately after delivery Ella Kate was shown to Jessie and Garet and taken to be cared for while Jessie went into recovery. A few hours later the two were reunited and their journey in the NICU began.
“Once I was able to finally hold Ella Kate I couldn’t believe my eyes,” said Jessie. “She fit in the palm of my hand. I had dreamed of this moment for so long and was overcome with joy that she was finally here. No matter how small she was, my heart was bursting and I knew that I would do anything and everything to ensure that she made it through her NICU stay. She was so tiny but so strong. She is my miracle.”
Their 115-day stay in the NICU was one that will leave a mark on their family forever. Spending roughly 12-15 hours a day in the NICU with Ella Kate, Jessie connected with their team of doctors, nurses, lactation specialists and felt like they had a new extension of their family. With a complete team of doctors, nurses, lactation specialists and more, Jessie knew Ella Kate was being cared for by the best.
“We had everything we could possibly need and I knew we were being cared for by the absolute best. The nursing staff would go above and beyond to make our home away from home as comfortable as possible. Every single person was so thoughtful. I remember one nurse in particular, Kristy Cooksy, RN, would always do certain things around the holidays to make them as special as they could be. We were in the hospital for Mother’s Day, Father’s Day and 4th of July and Kristy would make art or pictures with Ella Kate so we had little keepsakes when we went home. It was so kind of her.”
A major turning point in their time at the NICU was when Ella Kate learned to eat on her own. Like most premature babies, Ella Kate had a lot to learn before she could accomplish this difficult task.
“For all babies in Ella Kate’s situation our first area of focus is the most important – which is breathing,” said Judith. “Once they get the support they need for breathing, and their respiratory system catches up, then we can concentrate on the next priority, which is eating. The biggest challenge for a pre-term baby is coordinating the tasks of sucking, swallowing and breathing. This is a very complex activity at this age. Their central nervous system has to be mature in order to accomplish what is needed, which is why we rely on the feeding tube initially.”
In most premature situations, a nurse will offer the baby their first bottle. The first feed is the time for assessment of the infant’s ability to successfully suck. Because the danger of choking is high, the experienced nurse is much better able to handle this milestone. Kristy sat with Ella Kate and patiently offered up her first bottle. The moment she started drinking, there was a unified sense of peace in the room – everyone felt a huge sigh of relief.
“We all just stood there and cried together. It’s really unexplainable when you watch your child drinking on her own after months of being on a feeding tube,” said Jessie. “Kristy was so sweet and saved that bottle for us marking how much she drank so we could keep it forever. This was a major moment for us because we knew she was almost ready to go home.”
On August 13th, Jessie and Garet received the news that Ella Kate was ready to go home. Although their experience was had been nothing like they had anticipated, they wouldn’t change a thing about it.
“You can’t begin to understand the emotion you go through during this process but the amount of support we received from everyone at Tallahassee Memorial HealthCare was what carried us through. We spent every day together and I have nothing but amazing things to say. The entire team of nurses, along with the doctors and support staff are all family to us now. I can’t thank them enough.”
Saving Piper’s Heart
12 hours and two cities – How one critically ill infant goes from heart failure to heart healing.
In Patti Seagraves’ nearly four years as a family medicine physician assistant (PA-C) in the greater Tallahassee area, she has seen and treated almost every health condition — from sinus infections and ankle sprains to diabetes and heart disease.
But things look very different from the perspective of a new mom, even one with medical training.
Patti had a picture-perfect pregnancy right up until she began to develop symptoms of preeclampsia, a potentially life-threatening complication that causes high blood pressure and can affect the kidneys and other organs. At 34 weeks, Patti’s obstetrician made the decision to deliver the baby via cesarean section as her condition began to worsen and the risk to mom and baby grew.
Patti gave birth to a healthy baby girl, Piper Lauren, in September. Because Piper was born early, she required a two-week neonatal intensive care unit stay at Tallahassee Memorial HealthCare (TMH), but appeared perfectly healthy.
When Piper was nearly six weeks old, Patti began to see changes in her baby.
“I noticed Piper’s feeding was taking longer and she wasn’t taking in as much,” she said. “But she’s a baby, and babies change their schedules. My husband and I weren’t too concerned at first.”
Their concern grew when Piper’s feeding issues continued, and she spit up a lot when she did eat. “She was breathing pretty fast and sleeping a lot more,” Patti said. “We knew something wasn’t right.”
The new parents had a baby monitor that included a device to track an infant's heart rate and oxygen levels. “Piper’s oxygen saturation levels were in the high 80s and low 90s at the time,” Patti said. “I knew that wasn’t good, and I told my husband we needed to take her to the ER.”
Doctors at TMH ordered a chest X-ray and bloodwork. But when Piper’s condition continued to worsen, they called in Thomas Truman, MD, pediatric critical care physician at Tallahassee Memorial HealthCare, who arrived at 3 am that day. Piper’s oxygen saturation levels were now down to the low 80s and she wasn’t resting and was struggling to breathe.
“Most babies at this age with breathing troubles are suffering from either a viral or bacterial respiratory illness that irritates the airways or lungs,” said Dr. Truman. “When Piper didn’t respond well to respiratory support, I explained to her parents that I was concerned it was potentially a problem with her heart and asked Dr. Vining to evaluate her.”
Mac Vining, MD, a pediatric cardiologist with Wolfson Children’s Specialty Center at Tallahassee Memorial HealthCare, was called in. It wasn’t the first time Dr. Vining and Patti had met: she and her colleagues at Tallahassee Primary Care Associates (TPCA) had attended several of Dr. Vining’s continuing medical education events and the two had established a close professional relationship.
“I didn’t realize it was Patti until I walked in the room,” Dr. Vining said. “When I was briefed on Piper’s symptoms that morning, I was initially very concerned she had a congenital heart defect. In babies that age, an inability to feed is one of the most concerning issues related to congenital heart disease because feeding is how babies use most of their energy.”
Congenital heart disease is the most common birth defect, affecting nearly 1 in 100 newborns in the U.S.
To determine if his diagnosis was correct, Dr. Vining performed an echocardiogram, a sonogram of the heart’s chambers, valves, walls and the blood vessels. The echocardiogram showed Piper’s heart was enlarged and she also had a bicuspid aortic valve that was severely narrowed, impacting her body’s ability to regulate blood flow from the heart into the aorta.
A Tallahassee-Jacksonville connection
Concerned the baby was so young and in such distress, Dr. Vining knew time was of the essence.
He reached out to his colleagues in Jacksonville, pediatric cardiologists Robert English, MD, and Brandon Kuebler, MD, with the UF Health Pediatric Cardiovascular Center affiliated with Wolfson Children’s Hospital. The three children’s heart specialists were in agreement, and Dr. Kuebler immediately arranged for the baby to be transferred to Wolfson Children’s via the Kids Kare Mobile ICU.
Piper arrived in Jacksonville that afternoon, with an expert cardiac team standing by. Dr. English remembered: “Piper was in critical condition with severe aortic valve stenosis, meaning her heart could not push blood through the aortic valve to get to the body. Her heart was failing, and she needed immediate treatment.”
Dr. Kuebler performed an echocardiogram to confirm the diagnosis before sending Piper to the Cardiac Catheterization Lab, where Dr. English performed an interventional procedure to dilate the baby’s narrowed aortic valve.
“One of Piper’s cardiac nurses, whose name is also Patty, was with us from the Cath Lab to the Cardiovascular ICU (CVICU),” Patti remembered. “She called us when the procedure started, part-way through and when it was finished.
“Then Patty took us down to the Cath Lab so Dr. English could show us pictures of our baby’s heart and tell us how she was doing,” she added. “Since I’m a PA, I wanted to understand what Piper’s heart looked like when he was in there and what he found. Right after the procedure, Piper’s oxygen levels returned to normal. And all of this took place within 12 hours from diagnosis in Tallahassee to treatment in Jacksonville!”
After a short stay in the CVICU at Wolfson Children’s, Piper was discharged, and the Seagraves family was able to return to Tallahassee, where Patti is now a stay-at-home mom.
Heart care near home
Fortunately, Piper is able to have her follow-up appointments with Dr. Vining at Wolfson Children’s Specialty Center at Tallahassee Memorial HealthCare through an affiliation agreement between the major Big Bend area health system, the Northeast Florida children’s hospital, and Tallahassee Primary Care Associates.
Although Patti never expected she or her family would need the pediatric specialty services that are part of the affiliation, she’s relieved it was there for Piper.
“Tallahassee is a large city, the capital of Florida, but we were lacking in some pediatric specialty services before this affiliation,” she said. “If these services weren’t here, we would’ve had to travel three to four hours to Jacksonville to get the outpatient care Piper needed. That’s not easy when you have a little one. When you have specialty care in Tallahassee, you bring local families a lot of comfort, so this is a phenomenal resource.”
Eva and Leah
Eva and Leah Joseph mirror each other in every way. These sisters dance together, laugh together, cry together - but now, at nearly two years old, they share a rare bond even for
identical twins. They both have type 1 diabetes. Read more
A happy 7-year-old boy, Joshua Sullivan and his two brothers were enjoying one last getaway with their mom, Mary Sullivan, before heading back to school for the year. Their weekend was full of activities that any boy would enjoy: a trip to the beach, a pit stop at a nature center to learn more about reptiles, a chance to play at Grandma’s house. What started as a final hoorah before starting second grade, quickly turned into the beginning of a very memorable weekend for Joshua and his family.
“After being in the car for several hours, I figured that the boys needed to play outside and run around,” said Mary Sullivan as she was settling into her mother’s home in Tallahassee for the final leg of their trip on that August evening. “I yelled for the boys to come inside, but when Joshua ran through the door, I could tell something was wrong.” If you ask the Sullivan boys, you may get completely different stories, but the consensus was that Joshua had stepped on a “stick” when running inside. That’s when the “stick” flew forward and stuck two fangs into one of Joshua’s middle toes. “Joshua came in screaming he had been bitten by a snake. After I looked at his toe, it was clear Joshua had two punctures. He had been bitten by a snake,” Mary knew, with the guidance of her sister-in-law, she needed to take him to the Tallahassee Memorial Emergency Center - Northeast.
While the car ride was full of scared screams and Joshua’s toe turning shades of blue, once arrived the Sullivan family was immediately transferred into a room where Natalie Radford, MD, board certified emergency medicine physician, began the procedure for a venomous snakebite. His toe turned deeper pigments of blue and purple as his entire foot continued to swell. The venom kept spreading up towards his ankle.
Once Dr. Radford and her team had given him a few rounds of anti-venom and felt he was stable, Joshua and his mom were transported to the only Pediatric Intensive Care Unit (PICU) in the Big Bend, the Tallahassee Memorial Children’s Center. During the ambulance ride, Joshua’s new fascination with snakes quickly turned terrifying as he remembered the specific facts he learned about venom. Joshua began crying, “I’m going to die mommy. I don’t want to die,” between the waling sounds of the ambulance.
Upon being admitted to the PICU, Julie Strickland, RN began treating Joshua, “He was very brave and was most interested in finding out what kind of snake bit him” as his little mind wrestled with the hope that it was not a poisonous snake. As the swelling continued in the PICU, Paul Martinez, MD, board certified pediatric intensivist, addressed spreading of the venom with a few more rounds of anti-venom while nurses kept record. “As the venom continued to spread up his foot, nurses would mark Joshua’s foot with a marker,” Joshua’s father, Dean Sullivan, made it to the PICU in record time from their home in Broward County, FL, after getting the call he will never forget.
During his 2-day stay in the PICU, Thomas Truman, MD, board certified pediatric intensivist, cared for Joshua’s recovery ensuring that the anti-venom had stopped the spreading of the poison. Dean watched as his son began to become himself again, “At one point, Joshua had been getting restless having to lay in bed for some time. A nurse brought in a Nintendo Wii video game which quickly changed the PICU from being a place he couldn’t wait to leave, to a place he was begging to stay.” After two and a half days, Joshua was finally able to be wheeled back into his normal life.
If you ask the Sullivan’s why they chose to come to TMH, they would tell you it was a no brainer. “I was born at TMH,” Mary accounted. “Even after moving away from Tallahassee, I knew in an emergency situation I wanted TMH to care for my son.” Dean echoed that statement, “They treated my son like he was their own. It is amazing to see how much TMH has evolved since we left Tallahassee in the 90’s.”
What is Joshua Sullivan up to now? His visit to TMH gave him a scar and a story that he is quick to share with anyone who asks, especially his little league baseball team. Just two weeks after the incident, Joshua made his first home run – proving his snakebite isn’t slowing him down anytime soon.
One evening, while going about her nightly routine, Jolanda McCoy noticed her four-year old son, Carter, had a low-grade fever. “Since there were no other symptoms, I did what I would normally do, and gave him the appropriate amount of fever reducer. He went to bed as usual,” explained Jolanda. The next morning Carter’s parents noticed that his eye was starting to swell.
Jolanda and Billy Joe, Carter’s dad, immediately took Carter to the local emergency room in Cairo, Ga. He was admitted and monitored, but when his eye started swelling rapidly, Carter was transferred to the Tallahassee Memorial Children’s Center.
Soon after arriving in the TMH Pediatric Intensive Care Unit (PICU), a CT scan was performed on Carter and his medical team located an abscess behind his right eye. He was diagnosed with a periorbital abscess with associated sinusitis - an infection of the sinuses and adjacent tissue in the cheek and eye. Carter was rushed to surgery where Adrian Roberts, MD, an otolaryngologist also known as an ear, nose and throat (ENT) specialist, was able to endoscopically drain the infection from his eye and affected sinuses. “It all happened so fast,” Jolanda recalled.
A hospital can be a scary place for a sick child, especially in situations like Carter’s, but it doesn’t have to be. As the McCoys learned, Tallahassee Memorial has the region’s only certified Child Life Specialist on staff to provide kid-friendly explanations for tests and procedures, as well as procedural support. Lauren Sherrill, Child Life Specialist at Tallahassee Memorial, said, “I talked to Carter and told him the CT scan takes pictures of the inside of our bodies. And who doesn’t like to have their picture taken? ”The day after Carter’s surgery, Lauren introduced the McCoys to an evidence-based educational behavioral intervention program known as Creating Opportunities for Parent Empowerment, or COPE. This program was originally created to help parents with children in the Newborn Intensive Care Unit (NICU), but Tallahassee Memorial became the first hospital in the country to apply the COPE program to children from two to seven years old admitted to the PICU.
The COPE program is designed to reduce stress for families with a child in the hospital, empower parents and caregivers to be actively involved in their child’s medical care and improve the overall outcome for each patient. It features a series of digital and written material for the parents and play activities for children. At TMH, the COPE program is implemented in the NICU and PICU.
Carter’s grandmother, Connie Saul, was by Carter’s side during the majority of his 10-day stay at the Children’s Center. “The program consists of great information and a workbook with activities for parents and their children to perform. The book Jenny’s Wish was a favorite because, as an adult caregiver, it gave me a better understanding of how Carter felt,” explained Connie. “Carter particularly liked the medical play because it gave him a way to participate and play out what was happening to him.”
“It meant a lot to our family that he was able to play and somewhat forget about his illness during that time,” said Jolanda. “He received such outstanding treatment. TMH is awesome!” According to Billy Joe and Jolanda, Carter is happy, healthy (with no vision issues) and back to playing with his friends and toys.
What started out as a week of spring break fun ended with a hospital stay for seven-year old Shelby Bassett.
“Shelby was visiting my sister in Tampa,” says Meghan Bassett, Shelby’s mom. “My sister called Thursday night to say Shelby wasn’t feeling well.” Shelby had stubbed her toe at school the week prior and stubbed it again. She had a fever and her toe was red and warm. “We drove to Tampa to pick her up.”
It was 12:30 a.m. when the Bassets arrived at TMH’s Emergency Center-Northeast. “Thankfully, parking was very convenient and we didn’t have to wait long at all,” said Meghan. Due to Shelby’s high fever, her pediatrician, Dr. Anna Koeppel, admitted her right away to the Children’s Center, TMH’s inpatient pediatric unit, for observation and an MRI.
A hospital can me a scary place for a sick child, but it doesn’t have to be. The Children’s Center has a child life specialist on staff to provide kid-friendly explanations for tests and procedures as well as procedural support. TMH Child Life Specialist Lauren Sherrill recalls, “I told Shelby the MRI looks like a giant doughnut, and we all like doughnuts, right?” “I used a picture book to show her exactly what the machine looks like and said it makes a loud sound, but it won’t hurt you.”
Osteomyelitis – an infection in the bone – was suspected. “Dr. Wong, the orthopedist, was great and so quick to speak to us after the MRI,” said Megan. Shelby spent four days in the hospital and was discharged, continuing her antibiotics.
Ten days later, Shelby had a fever of 102 degrees and was readmitted. She had developed scarlet fever, an infection caused by strep bacteria. “The infection settled in her fractured toe,” said Meghan. “I know scarlet fever can be very serious. I’m a pediatric nurse, but when your own child is sick, it’s tough.” A PICC line – a peripherally inserted central catheter – was prescribed for extended antibiotic therapy.
The trip back to the Children’s Center meant seeing familiar faces. Child Life Specialist Lauren Sherrill worked with Shelby again, this time to explain the PICC line. “I showed her where the catheter inserts in her arm and how it looks once taped up.” Explaining what to expect was calming for Shelby and her mom. Once she was feeling better, the art therapist visited Shelby and colored pictures with her – a comforting and familiar activity she does at home.
Shelby is fully recovered and doing very well. The Bassett family is grateful for her care at every step and especially the extra care given to make her comfortable and unafraid. “We were very confident with the care she received,” said Meghan.