Kimberly (Kim) Weeks has spent a lifetime with conditions doctors could never pinpoint causes for or new diagnoses added to her list of chronic conditions. Across her life she always had reoccurring asthma, bronchitis and ear and sinus infections, among other ailments.

“It seemed like every time we would go to the doctor they would say, “You have this’ and ‘Now this is going on,’” Kim said, an avid animal lover who works at a veterinarian clinic in Bradenton, Fla.,

In the spring of 2019, a sinus infection turned into double pneumonia, and she had to be placed on a ventilator for two days. Her doctors were considering removing part of the then-32-year-old’s lung. But they were hesitant to perform the surgery because they were still unsure what was making Kim so sick.

That led Kim to seek treatment from USF Health Jolan Walter, MD, PhD, division chief of the USF Health Pediatric Allergy and Immunology programs in the Morsani College of Medicine.

“I soon established that this is not the primary problem with the lung, but maybe her immune system is making her prone for the disease,” said Dr. Walter, who eventually diagnosed Kim with a version of severe combined immunodeficiency (SCID) referred to as leaky SCID.

Jolan Walter, MD,PhD

Leaky SCID is an atypical immune deficiency in the bone marrow that prevents white blood cells from maturing, which hampers their ability to fight infections. These cases may remain unnoticed for years before emerging with organ-damaging effects as the patient’s own immune system mistakenly attacks the body’s own tissue.

“Not only has Kim lost her immunity … she also acquired autoimmune complications,” Dr. Walter said.

The autoimmune complications included vitiligo, which causes the skin to lose color in blotches, and alopecia, or sudden hair loss. “Over time, it progressively got worse,” Kim said.

DNA samples

Dr. Walter determined that the only solution to restore Kim’s immune system was a bone marrow transplant, or hematopoietic stem cells. It came with risks.

“It was not an easy decision,” Dr. Walter said.

Treating leaky SCID with a bone marrow transplant is experimental, so Kim was sent to a National Institutes of Health (NIH) hospital in Maryland for the procedure.

“I don’t want to die, that’s my biggest fear,” Kim said.

In May 2021, Kim’s brother donated bone marrow for the transplant. She was the eighth person in the country to undergo the procedure for this condition. She was hospitalized for 45 days.

In the year since the transplant, Kim’s health has steadily improved, and she hasn’t seen a return of her symptoms.

“Overall, Kim being a year out of her transplant and the way she looks and feels is one of the biggest gifts that I can get from my career,” Dr. Walter said.

Now 35 years old, Kim can look forward to enjoying her life with family, friends and furry friends thanks to the excellent care provided by Dr. Walter and her team.

Dr. Jolan Walter with Kim Weeks during a follow-up appointment.

“She’s brilliant; she ensured that I’m going to be around to see my nieces and nephews graduate high school, college and be married,” Kim said.

Kim’s treatment was so new that Dr. Walter chronicled her case as the senior author in an article under review for the “Journal of Allergy and Clinical Immunology: In Practice”, with former USF Health Pediatrics chief fellow Maria Chitty Lopez, MD, who is currently affiliated with the Children’s Hospital of Philadelphia, serving as a first author. Kim’s case was also included in a study recently published by Nature Immunology.

Several USF Health team members of Dr. Walter’s laboratory have contributed to Kim’s case including David Evan Potts (MD & PhD student), Dr. Krisztian Csomos (research associate),  Melis Yilmaz (student intern), Boglarka Ujhazi  (biological scientist) and several past and current fellows in training in USF Health Allergy Immunology (Drs. Natalie Diaz-Cabrera, Tara Saco, Leah Ismael) and colleagues from our community (Dr. Roger Danziger).

Children under 12 years old are currently not eligible for the Moderna COVID-19 vaccine. The USF Health Morsani College of Medicine has been selected as one of several sites conducting trials on Moderna’s coronavirus vaccine for this age group.

The first part of the trial, which focused on children 6-12 years old, is complete. USF Health researchers want to enroll 100 children ages 6 months to 5 years for a second trial by early December.

“A vaccine for children is necessary because they can transmit COVID-19, get sick enough to be hospitalized, experience long COVID—and sadly some children have died from COVID,” said Carina Rodriguez, MD, principal investigator for the Moderna trial at USF.

Carina Rodriguez, MD, principal investigator for the Moderna trial at USF Health.

Dr. Rodriguez, who is also a professor and chief of the Division of Pediatric Infectious Diseases in USF Health’s Department of Pediatrics, said, “the goal is to look for an efficacious and safe COVID vaccine for children.” She continued, “It’s needed to accomplish the end of this pandemic.”

For more information about the trials or enrollment, please send an email to usfchildrenscovidvaccine@gmail.com or call/text at 813-853-1149.

TAMPA, Fla (August 11, 2021) – The USF Health Morsani College of Medicine has been selected as a site for a clinical trial testing the Moderna mRNA-1273 COVID-19 vaccine for children ages 6 months to less than 12 years old.

Moderna intends to enroll up to 12,000 pediatric participants in the United States and Canada in this Phase 2/3 research study, called KidCOVE Study. The USF Health research physicians are seeking Tampa Bay area volunteers to participate in the KidCOVE study to evaluate safety and immune responses.  Enrollment begins for USF Health in coming days.

Image courtesy of Moderna.

“USF Health is pleased to join this national clinical trial to determine the safety and effectiveness of Moderna vaccines in children and younger populations,” said Charles Lockwood, MD, senior vice president of USF Health and dean of the USF Health Morsani College of Medicine. “Widespread vaccination is the best defense against COVID-19, and this rigorous scientific study may go a long way toward increasing vaccine access in this younger demographic.”

Leading the USF Health effort as principal investigator is Carina Rodriguez, MD, professor and chief of the Division of Pediatric Infectious Diseases in the Department of Pediatrics in the USF Health Morsani College of Medicine.

“This research study can help provide critical information about the safety, reactogenicity and immune responses observed with the vaccine in children and ultimately allow the vaccine to be approved for children,” Dr. Rodriguez said. “A vaccine that prevents COVID-19 disease in children would be a crucial public health tool to help curb the pandemic. We are eager to contribute to the innovative science that is working to bring a safe and effective solution for our younger patients, who are also vulnerable to this health threat.”

SOFIA. BULGARIA. FEBRUARY 24,2021. A Moderna Covid-19 Vaccine vial with sterile syringes

Participants will be seen by the study team based in USF Health’s Department of Pediatrics. Three out of four children participating in part 2 of the KidCOVE clinical trial will receive two intramuscular injections of the vaccine spaced at four weeks apart. The vaccine is made of messenger ribonucleic acid (mRNA), an instructional code that tells cells how to make protein, which help the body’s immune system make antibodies to fight the virus. The remaining quarter of participants will receive injections of a placebo made of saline (sterile salt water) solution.

All participants will be randomly selected to receive the vaccine or placebo. Participants will be followed for 12 months post-vaccination to monitor their health and safety.

Eligibility criteria

Study volunteers must be:

• No younger than 6 months and less than 12 years old
• In good health or with stable chronic conditions

Study volunteers must not:

• Have received an investigational or approved vaccine for COVID-19
• Be currently taking any investigational or approved treatments for COVID-19
• Have tested positive for COVID-19 or been in contact with anyone diagnosed with COVID-19 within 2 weeks prior to vaccine administration
• Have participated in any clinical trial in the past month

Enrollment for the USF Health Moderna KidCOVE Study begins in coming days, via email (usfchildrenscovidvaccine@gmail.com) or phone/text (813-853-1149).

Inside the mother’s womb, a fetus exchanges oxygen through the umbilical cord. Once the fetus is delivered, the umbilical cord is clamped, giving the baby the ability to breathe oxygen independently. In rare cases, the fetus has a severe congenital abnormality that obstructs the airway and makes independent breathing after delivery difficult or impossible. Instead of a traditional birth, an innovative surgical procedure, the Ex Utero Intrapartum Treatment (EXIT), is performed to deliver the baby. During this procedure, the baby’s head and shoulders are delivered by an elective Cesarean section, leaving the umbilical cord and placenta intact while pediatricians establish an independent, free airway. After the airway is well established by the pediatricians, the umbilical cord is clamped, and the baby is delivered completely. The procedure may take up to five to ten minutes and requires full coordination between obstetrics, anesthesia, and pediatric teams. USF Health and Tampa General Hospital’s multidisciplinary team performed its first EXIT procedure in 2009 and second in 2016. January 2019 marked the third time in order to deliver a baby with a growth from the tongue that was compressing the airway.

The January 2019 EXIT delivery team featured Sarah Obican, MD, high-risk obstetrician, maternal-fetal medicine subspecialist, who performed the surgery and delivery of the baby in order for the airway to be established. (Photo courtesy of the USF Health Fetal Care Center of Tampa Bay)

“When you do cases of such complexity, you can’t do it alone. You need to have an institution that offers all these subspecialists in one setting and that’s what USF offers,” said Prasad Burjonrappa, MD, MBA, division chief of Pediatric Surgery. Dr. Burjonrappa’s role during the 2019 EXIT procedure was to work alongside Jaime Flores-Torres, MD, neonatologist, to evaluate the infant’s airway and determine if he was a candidate for endotracheal intubation, the placement of a tube into the trachea through the mouth or nose, or if the baby needed a tracheostomy, a surgical procedure to create an opening through the neck into the trachea.

(Left) The baby was born with a growth from the tongue that was compressing his airway. (Right) After the removal of the mass, the baby went home a few days later with no complications. (Photos courtesy of the USF Health Fetal Care Center of Tampa Bay)

An EXIT procedure involves two patients – mother and baby – who each need specialized care to avoid complications. This is why the procedure requires a multidisciplinary team of up to 20 physicians and other health practitioners. With such a large team working together, the procedure needs to be highly coordinated because it’s critical that everyone knows their role, when to act, and how long they have to finish. The USF-TGH team establishes protocols and contingency plans and practices mock surgeries to prepare for every outcome. To ensure the procedure runs smoothly, Anthony Odibo, MD, MSCE, FRCOG, FACOG, director of the USF Health Fetal Care Center of Tampa Bay, oversees and directs the various teams that come together to make the high-risk delivery a success.

“The most challenging part of this is the unknown,” said Sara Zientara, fetal care coordinator for the Fetal Care Center. “You don’t know exactly how that baby is going to come out. You don’t know exactly how that surgery is going to go and you just have to take it as it comes and be able to multitask and problem solve, so preparing everyone for what their role is and could be is important.”

Thanks to the well-established USF Health Fetal Care Center at Tampa General Hospital and the prepared and coordinated team, the January 2019 delivery was yet another success. Once the baby was born and was transferred to an ICU, the baby stayed intubated until the procedure to remove the mass was complete, and then the mother and baby went home a couple of days later without any major complications.

A small part of the EXIT procedure team at the USF Health Fetal Care Center of Tampa Bay located at Tampa General Hospital. (From left to right) Amy Amato, clinician of operations for the TGH women’s operating room, Jaime Flores-Torres, MD, neonatologist, Prasad Burjonrappa, MD, MBA, division chief of Pediatric Surgery, Sarah Obican, MD, high-risk obstetrician, maternal-fetal medicine subspecialist, Sara Zientara, coordinator for the Fetal Care Center, Chinedu Nwabuobi, MD, MS, 3rd-year maternal-fetal medicine fellow. (Photo by Allison Long)

Learn more about the USF Health Fetal Care Center’s multidisciplinary team involved in this EXIT procedure.

Story by Torie Doll. Videos by Torie Doll and Allison Long.

USF surgeon Dr. Charles Paidas reconstructed Kaitlin Smith’s intestines, fixing a problem that had haunted the teen her entire life

Kaitlin Smith earned great grades and awards in middle school and was at the top of her class – all signs of a smart and driven teen.

Kaitlin Smith, 16

But friends and family of this 16-year-old didn’t realize she managed this success while feeling constantly nauseous, frequently throwing up and, in essence, starving because of an unknown blockage in her intestines.

Stronger clues began to appear as she entered high school – fatigue that bordered on exhaustion and her already-thin body began to look emaciated. With Kaitlin’s struggle intensifying, her family took action.

***

Nearly 16 years ago Kaitlin was born with a blockage in the first portion of her intestine just beyond her stomach. For her first 10 days after being born, she constantly vomited. Using an endoscope, doctors discovered that liquid would not go beyond her stomach – it stayed in her stomach until newborn Kaitlin threw it up. Two emergency surgeries were required to open the blockage (called an atresia), allowing her to keep food down.

Since that neonatal series of operations, Kaitlin’s family watched her grow, thinking that her digestive problems were gone. Across her childhood, Kaitlin thought the same. Sure she still felt nauseous and was always tired. But she didn’t realize that was abnormal – she thought everyone felt that way, too. And she never complained, so her family didn’t realize just how much she was struggling.  Turns out that, despite two attempts at reconstruction as newborn, the opening in her intestine continued to narrow.

//www.youtube.com/watch?v=Gzc-ILUhMpw

How could her mental state stay so strong? That’s the question Kaitlin’s grandmother asks now, looking back.

“It was amazing she was able to survive like this for so long,” said Nita Wombles. “But she’s not a quitter. She never complained of being nauseated and she ate like a bird. She was very thin, but so is her mom and dad.”

As Kaitlin started high school, it became obvious to those around her that her health was deteriorating rapidly. A family doctor in their hometown of Lakeland referred her to a specialist in Tampa, who then directed her to Dr. Charles Paidas, chief of the Division of Pediatric Surgery for the USF Health Morsani College of Medicine.

USF Health pediatric surgeon Dr. Charles Paidas with Kaitlin, who is thriving following the reconstruction of her digestive tract.

***

Kaitlin’s third operation was in June of 2014. She was exhausted but had tremendous hope – the problem that had haunted her for her entire life was very likely fixable. She knew she was in the right place with the right surgeon.

Just before the operation, she told Dr. Paidas how much she believed in him.

“What a great way to go into the operating room,” Dr. Paidas said.

The operative plan was fairly straightforward but, like many procedures, the plan going in isn’t always what ends up playing out.

“Every endoscope and image using a contrast agent had us all convinced she had a dilated stomach and that everything beyond the stomach was fine, that maybe it was residual scar tissue from her previous surgery creating an additional blockage,” Dr. Paidas said.

“But once we were in, we saw that not only was the stomach dilated but also the entire loop of intestine beyond the stomach, called the duodenum, specifically the first and second portions of the duodenum that borders the pancreas. There was only a pinhole for any food and nutrition to pass through and, as a result, the redundant dilated duodenum and stomach was the root cause of her problems.”

According to Dr. Paidas, the procedure involved tapering the enlarged duodenum, narrowing the section that leaves the stomach and re-opening a pathway to the rest of her intestinal tract. The reconstruction required careful navigation to prevent blockage of bile into the intestinal tract from the nearby pancreas and liver ducts that open right where the problem originated.

Dr. Paidas helps explain Kaitlin’s digestive problem with a sketch on examination table paper.

“Once we dissected all the intestine and scar tissue and assessed normal and abnormal organs, we carefully tapered and reconnected,” he said. “The result is that the stomach and duodenum are now the correct size, functioning properly, and in continuity to pass early digested food on to the intestines, like normal children, giving Kaitlin a working digestive tract for the first time in her life.”

Kaitlin’s condition affects one in 4,000 live births and is part of a spectrum of duodenal anomalies that occur in the first 8 to 10 weeks in-utero.

“During pregnancy a classic double-bubble is suspicious for duodenal atresia but we typically do not do any in-utero reconstruction, but rather wait until the baby is born because there may be associated anomalies,” Dr. Paidas said.

So while Kaitlin’s condition is fairly common in neonates, being treated in her teens places her in a very rare category, a point that likely drew added attention from the teams of health care providers making rounds at TGH during Kaitlin’s two-week stay following surgery.

“After a while, we built a bond with everyone,” Wombles said. “We understand it’s a learning process so we didn’t care who they brought around. We want others to have the knowledge, especially because she was a rare case.”

***

Nearly two years now has passed since the procedure. Kaitlin has thrived, is in her junior year of high school, and is getting great grades and awards.

“There are no words to express how thankful we are to Dr. Paidas and his entire surgical team for their professionalism,” Wombles said. “How does one say ‘thank you’ to someone who gave you back your granddaughter?”

And her gratitude goes beyond this one surgeon.

“We are also grateful to Tampa General Hospital, the entire staff, nurses, Kristyn our Pediatric Surgery nurse practitioner, Intensive Care Unit team, everyone!,” Wombles said. “I spent a great deal of time there, day and night, and I was so impressed with the staff. They are very professional and at the same time so thoughtful, considerate and kind. USF and TGH are so very fortunate to have Dr. Paidas here in the Tampa area. May God continue to bless him and his entire team as they strive to save our children and grandchildren.”

***

Throughout interviews Kaitlin remained fairly quiet. Somewhat shy or just a low-key teen, she would offer only a few words, letting her grandmother help tell her story.

But gratitude poured out in a letter from Kaitlin describing her thanks to Dr. Paidas and the USF Health and Tampa General teams:

Before the surgery, it was difficult to function. Hardly a day would go by that I did not get extremely fatigued. Though I maintained “highest honors,” academically it was hard to focus.  However, a few weeks after the surgery, the days passed easier. I could think more clearly and did not get fatigued as easily. To my surprise, on most days I wasn’t even fatigued at all. I am now able to pursue interests that would not have been possible before.

Dr. Paidas, his team, and the staff at Tampa General Hospital were extraordinary throughout the entire surgical process. My expectation was that the experience would be impersonal because of the medical staff’s hectic schedules and the amount of patients that are seen on a daily basis. However, my expectation could not have been further from the truth. I felt a personal connection with Dr. Paidas and his staff and I felt as though they cared, and still do care deeply about my wellbeing.

Sometimes people do things for you that make it hard to think of a way to say “thank you” properly.  Before the surgery my goal was to be a psychologist.  I am now directing my attention to surgery or in forensic pathology so I can help people regain their health or to find out why things go wrong and be a part of the solution. I am currently an intern at the Polk County Medical Examiner’s office.

Thank you Dr. Paidas!

Kaitlin Cierra Smith

Photos and multimedia by Eric Younghans, USF Health Office of Communications

USF kidney expert Dr. Alfonso Campos guides the family and health care team, from diagnosis to transplant to success.

Twenty weeks into her pregnancy with her second child, Melissa Ranieri was told there was a problem with her baby and that he might not make it past birth.

The news hit hard. Their baby boy Evan had very small kidneys and would likely not be able to survive on his own. She and her husband Paul carried the weight every day, turning to family for support, turning to the internet for research and similar stories.

Evan Ranieri snuggles with his mom Melissa.

And turning to USF pediatricians for deeper answers and a second opinion.

That second opinion came from Alfonso Campos, MD, associate professor of pediatric nephrology and an expert on kidneys in children, especially in babies.

“The first diagnosis turned our family upside down,” Melissa said. “But Dr. Campos told us Evan had a much better chance of survival than that.”

“Otherwise healthy, Evan still had small kidneys and they weren’t working well,” Dr. Campos said. “In many newborns, the problem subsides as they grow – they grow out of it. But not for Evan. He wouldn’t require dialysis right away, and he would need medications to address function, such as acid in the blood, and a careful diet. But the prognosis was renal failure.”

Although it was better news for the Ranieris that Evan was strong enough to get by for a while, the reality remained that Evan’s kidneys would not support him long before he would need a transplant. Decisions were made, like delivering at Tampa General because they “needed to be at the best hospital,” and the comprehensive kidney care provided there, Melissa said.

“Dr. Campos and his team made sure we were prepared for what was to come,” Melissa said.

“They even preemptively showed us the NICU (neonatal intensive care unit) to acclimate us to the environment so we would be ready,” Paul added.

***

Evan was born in March 2011 at Tampa General surrounded by a team of highly trained pediatric surgeons, nephrologists, NICU physicians and nurses, and others working together, standing ready to react to whatever Evan presented.

“Evan was only hours old when doctors confirmed our worse fears,” Paul said. “His kidneys were failing.”

The newborn was immediately put in the Muma NICU at Tampa General Hospital and the conversation turned to next steps, the first being finding a kidney donor.

***

Evan runs from room to room of the Ranieri’s new house in Riverview. Having just moved in a few weeks earlier, several rooms remain empty as the family settles in. Evan, who is nearly 4 years old, is making use of the open space to chase his big sister Avery, who is 7.

Evan and his sister Avery.

The bonds are strong in this family, but none as literal as those between Melissa and Evan – mother and child.

About 18 months after being born – after spending several months in the NICU before coming home for the first time, followed by nearly daily trips to TGH for dialysis – Evan’s kidneys totally failed. He went from having dialysis to get by to needing a kidney transplant in order to live.

And it was one of his mother’s own kidneys that saved him.

***

In May 2013, the renal transplant team transplanted a kidney from Melissa into Evan. Probably the most obvious question is how does an adult kidney fit into a toddler?

“Kidneys are amazing – once in Evan, the kidney actually shrank a bit and will grow as Evan grows, growing back into an adult size kidney,” Dr. Campos said. “And for Melissa, as an organ donor, she lost a kidney so her remaining kidney grew to accommodate.”

Sister Avery and Dr. Campos visit Evan while he recuperates at Tampa General. Photo courtesy of the Ranieris.

The Ranieris are eager to say that it was finding the right team that has helped their family the most.

“We really are so grateful for the medical staff at both Tampa General and USF,” Paul said. “Everyone in the PICU, the NICU, the doctors and nurses at every level, were all so welcoming and positive. It was a very good experience, considering the circumstances.”

Mother and son. Two kidney transplant patients at Tampa General, one giving, the other receiving. Photo courtesy of the Ranieris.

Signs of recovery. Evan races the halls at TGH following his transplant surgery. Photo courtesy of the Ranieris.

“The standards are different with TGH and USF,” Melissa said. “We knew with Evan we would need to have a higher level of care. Even if we had lived in Miami, we would have come to Tampa General and to the doctors at USF for their pediatric transplant expertise.”

Now, at 26 months post-surgery, and having just celebrated his fourth birthday, Evan’s future is bright and he’s expected to have a healthy childhood. There will be rules with his diet and there will be no contact sports. He will take anti-rejection medications for the rest of his life, although the fear of his body rejecting his single kidney is constant. Melissa and Paul know that Evan will likely need additional transplants later in his life, repeating what they’ve told themselves since he was born: a transplant is not a cure.

***

The Ranieris: Evan, Paul, Avery and Melissa.

Like many families, the Ranieris shared their story across social media. In addition to keeping friends and family posted on Evan’s progress, the social media presence helped meet a bigger goal: build awareness of the need for organ donation. This crusade to urge others of the importance of organ donation built a lot of momentum and Evan’s Facebook page has more than 2,000 friends. Although the surgeries are in the past, the family is still active with campaigns and donating their time to push the endless need for donors.

“We want Evan to feel empowered,” Melissa said. “It’s his journey, his story. We hope his story will influence others of kidney diseases and organ transplantation. We are strong advocates, active in Life Link and the National Kidney Foundation, as well as with the team at TGH.”

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“You might automatically think of older populations when you mention transplants,” Paul said. “But the reality is children need them, too. They have their whole life in front of them.”

And that includes Evan. He will likely need additional kidneys in his lifetime.

“I’m not a match, and Melissa can’t donate again,” Paul said. “He could need one to two more kidneys across his lifetime.”

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Dr. Campos is optimistic for improved medications, maybe even an effective artificial kidney if Evan does need another kidney.

“Currently, there are several kinds of antirejection medications and today’s medications have much better results than those in the past,” Dr. Campos said. “But there could be new meds that come along for him. I’m optimistic they’ll find even better ones, or develop an artificial kidney that the immune system won’t reject.”

But the bottom line right now, Dr. Campos said, is to fill out that donor card.

“We need more organ donors and they must be willing, able, and a good match,” he said.

Melissa gives an even more straight forward answer.

“If you donate, eight people’s lives will be saved,” she said.

Then, hinting to her single kidney, she smiled and said, “I’ll only be able to save seven and a half.”

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Visit Evans ORGANizers page on Facebook.

Photography by Eric Younghans, USF Health Office of Communications

The Lane family visits USF Health Pediatrician Dr. Cristina Pelaez (left) for a check up, and a flu shot.

It is unlikely that Tim and Angel Lane will ever move from Tampa. At least, not in the next couple of decades.

Their proximity to a network of experts who care for their son Jameson is too important to risk trying to find something similar elsewhere.

Jameson has a genetic form of hypotonia, meaning he has muscle weakness throughout most of his body. Both he and his twin brother Walker were born with hypotonia, turning their expected healthy birth – albeit an early one – into a dire emergency. Having little to no muscle control at birth meant the babies could not breathe on their own or suck or swallow.

“There was a great deal of stress from the get-go,” Tim said, recalling the intensity of everyone in the delivery room. “Neither boy could suck or swallow. Neither could blink.”

“We were all on pins and needles, even the doctors,” Angel said.

***

The Lanes’ first experience with the Doctors of USF Health was when their twin boys were transferred to the Muma Neonatal Intensive Care Unit (NICU) at Tampa General Hospital when they were 3 months old. They were in need of more advanced care and it was in the Muma NICU that the Lanes met a team of experts from the USF Health Morsani College of Medicine.

USF maternal-fetal medicine specialists, neonatologists, pediatric surgeons, pediatric radiologists, pediatric cardiologists, pediatric neurologists, geneticists, and many other health care specialists surrounded the twin boys over the many months they stayed in the NICU, followed the boys as they progressed to the pediatric intensive care unit, and there the many times the Lanes brought them to TGH’s emergency room. Even for ongoing visits, it’s a team of USF Health pediatricians who check progress and address issues.

By connecting with USF Health, the Lanes found an integrated team of experts within one group, providing seamless care to Jameson and Walker. But what the Lanes also found was a medical home – a patient-centered approach to delivering primary care that allows families to rely on only one group of health care providers.

Young Jameson sits patiently for Dr. Cristina Pelaez during a recent check up.

“USF’s medical home concept made caring for our boys so much better,” Tim said.  “There is an entire team of professionals here who knew the nuances of their condition. We have to be advocates for our children, who needed very specialized care. And to do that, we need help from top experts in uncommon conditions, as well as an integrated approach. That level of coordinated care means Jameson’s history is known by everyone on the team.”

“We were new parents, so to have doctors and nurses already aware of our entire story made every visit so much more seamless,” Angel said. “Without that transition from NICU to USF Health, I don’t know how successful we would have been in caring for our boys.”

Angel Lane.

“Our goal with acting as a medical home for patients really starts with the needs of the patients and their families,” said Cristina Pelaez, MD, assistant professor of pediatrics and director of the Medical Home Program for USF Health Pediatrics. “Medical homes provide families with a support system of experts who work with each other and talk with each other. In a broader sense, a medical home can also reduce medical costs in the long term, help children have better access to health care and improve health care use patterns, thus preventing disease for these children.”

***

Many different diseases and disorders cause the symptoms of hypotonia. But diagnosing the disease or disorder causing the problem can be challenging. It could be one of as many as 500 different conditions, Dr. Pelaez said.

For the Lanes, not knowing the underlying problem meant they had to take it day by day, with round-the-clock monitoring of their breathing and oxygen intake and feeding them through a feeding tube.

Tim Lane.

“They were amazing and prepared us before we took the boys home,” Tim said. “When we were discharged from the NICU, went home with a full entourage. That’s the scariest thing you face, is leaving. Before discharge came along they started working with us, showing how to use the pulse ox (pulse oximetry, used for monitoring oxygen saturation) and how to suction to clear their airways. We needed to suction the boys 30 to 40 times a day.”

But even with that level of attention, Walker succumbed to pneumonia from influenza and died in February 2013, just shy of his second birthday. The Lanes, still unaware of the root cause of the hypotonia, weren’t sure what the future held for Jameson.

Tim and Angel Lane hear details of on-going care from Dr. Cristina Pelaez, as Jameson and his older brother Braden play.

For two years, Jameson remained undiagnosed while doctors took blood samples and biopsies to conduct tests that ruled out the many possibilities of underlying conditions, including cerebral palsy, muscular dystrophy, among others.

It took a specially trained metabolic geneticist to finally determine Jameson’s root problem. Amarilis Sanchez-Valle, MD, is assistant professor of pediatrics in the USF Health Morsani College of Medicine and the only board-certified medical biochemical geneticist in the region.

What Dr. Sanchez-Valle found for the Lanes was that Jameson has nemaline myopathy, a congenital, hereditary neuromuscular disorder. Children born with nemaline myopathy often gain strength as they grow, and those with mild forms eventually walk independently, although often at a later age than their peers.

The firm diagnosis for the Lanes means they will worry a bit less — nemaline myopathy is not progressive so Jameson’s condition will not worsen – and are in a better position to help their son grow.

***

Jameson is walking. He’s even running around and playing, chasing his older brother Braden. Physical and occupational therapy are helping him learn to swallow and helping with his speech. Individuals with NM are usually highly sociable and intelligent, so on-going therapy will help him thrive.

“Jameson continues to flourish,” Tim said. “He would not be without help from TGH, and USF, and Dr. Pelaez.  She really took our boys under wing. We did not want for anything. Here, we are listened to, we are heard, and get to weigh in on decisions. The team put us in the best possible position for success.”

Jameson needs comfort from Dad after getting his flu shot.

And then, tearfully, accepts his well-earned sticker from pediatric nurse Rafael Uribe

The Jennifer Leigh Muma Neonatal Intensive Care Unit

Thousands of babies who are born too early benefit from the generosity of Pam and Les Muma. In 2009, the Mumas provided $6 million to USF Health to establish a highly specialized neonatal intensive care unit in the heart of Tampa General Hospital’s Children’s Medical Center. Their gift, one of the largest in Florida to support research and care for newborns, resulted in $14 million with eligible state and internal USF matches.

Named after their daughter who died in a neonatal nursery, the Jennifer Leigh Muma Neonatal Intensive Care Unit (NICU) was created to provide leading-edge treatment, training and research. With more than 50,000 square feet, the entire space is designed with a baby’s family in mind, from the colors of the corridor walls to the placement of telephones in each patient room. The NICU features 80 single-family rooms, a procedure room, and a semi-private area for 12 transitional babies. Light switches are placed strategically and bulbs angled to ensure the babies will not be startled by unintended bright light in the softly lit atmosphere. Even the hallways keep babies in mind with acoustic ceiling tiles that absorb excess noise.

Teaching and research are also key components of the NICU mission and environment, transforming patient care here, as well as advancing the study of neonatology in medical and academic institutions around the world. Neonatology fellows, pediatric residents and nurse practitioner students learn together, with a majority of teaching taking place bedside, patient to patient. The partnership between TGH and USF is the key to those efforts.

The Lane family, from left, Braden, Angel, Tim and Jameson.

Story by Sarah A. Worth, photos by Eric Younghans, USF Health Office of Communications

Elijah Lindall calls himself the Breakthrough Kid.

The name refers to a point in some clinical trials when a medical treatment proves to be so effective it can be made available to all patients in need.

Elijah Lindall

Elijah is taking part in USF clinical trials for medications that might ease symptoms of Tourette syndrome. There is currently no cure for Tourette syndrome. Some medications have some positive effects on some patients, but truly effective medications remain elusive. He knows it’s an ongoing process, possibly taking years. But he’s hopeful that he is part of the study that finds “the one.”

“I’m kind of nervous about how long it might take, but excited that I can help,” Elijah said.

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Elijah was 4 when his parents suspected something was wrong and 7 when the family finally found out why he wrung his hands throughout the day, repeated phrases, and had nearly constant tics.

Elijah has Tourette syndrome, a neurological disorder characterized by repetitive, involuntary movements and vocalizations called tics. Early symptoms of Tourette’s are typically noticed first in childhood, usually between the ages of 3 and 9, and occur in all ethnic groups. Males are affected about four times more often than females.

“We saw five doctors before we got a diagnosis,” his mother Maria Robinett said. “Until then, we hadn’t found anyone who could tell us definitively what was going on.”

As comforting as it was to finally know Elijah’s condition, his diagnosis did not equate to treatment and three more years passed. The moment when real hope appeared, Maria said, was at a local event aimed at raising awareness for Tourette’s. That was when they met Dr. Murphy.

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Tanya Murphy, MD, is professor of pediatric psychiatry and director of the USF Rothman Center for Pediatric Neuropsychiatry, located on the All Children’s Hospital Johns Hopkins Medicine campus in St. Petersburg.  She is an expert on Tourette syndrome and part of an interdisciplinary team of healthcare professionals specially trained in pediatric neuropsychiatry. The Rothman Center, located in St. Petersburg, is at the forefront of treatment and research for Tourette’s, as well as other psychiatric conditions affecting children (see below).

In essence, connecting with Dr. Murphy put Elijah at the epicenter of Tourette’s research in the region.

Tourette’s has historically been understudied, Dr. Murphy said, but recently there’s been an increased interest.

“We’re wrapping up several trials and several more are coming up, so things are taking a turn for the better,” she said. “It’s only when there is a concerted focus to find answers that we begin to make greater strides forward and help the most patients.”

Her research is not only about new medications. Interestingly, she said, there has been evidence showing that other medical issues might be causing the tics.

“We’ve found various issues that might be involved, including infections, allergies, celiac and thyroid disorders, which means more work is necessary at the basic science level,” she said.

In addition to the potential for finding a medication that would ease, or even stop, his symptoms, the expert team at the Rothman Center also helped arm Elijah with ways to manage his nearly constant tics, using habit reversal therapy techniques to steady his hand as he writes school assignments and control his drive to repeat phrases over and over.

Seeing improvement in how he gets through his day, Elijah has been inspired to take a more active role in educating others about Tourette’s. He gives talks about his condition to other children and plans to apply to become a youth ambassador for the Tourette Syndrome Association.

Elijah with Rothman Center Director, Dr. Tanya Murphy, who holds the ACH/USF Maurice A. and Thelma P. Rothman Endowed Chair in Developmental Pediatrics

“Elijah is a great advocate for Tourette’s and the consequences for people who have it,” Dr. Murphy said. “He and a couple of other patients have committed to the program to find new treatments. They are both giving beyond themselves and doing it for themselves.”

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There are misconceptions with Tourette syndrome, Dr. Murphy said.

The stereotype is of someone who has frequent outbursts of vulgar and inappropriate words. But in reality, that tendency is uncommon for children and adolescents.

“For most children, the signs are much more subtle, with simple movements like eye blinking, squeaking, arm jerking and facial movements,” she said.

It is also often thought that Tourette syndrome can be a chronic condition with symptoms lasting a lifetime. But a lot of children get better as they get older. In general, one third gets better, one third stays the same and one third has chronic, on-going issues, Dr. Murphy said.

And living with Tourette’s into adulthood does not equate to an unfulfilled life.

“Tourette’s can be mild or derailing, but most people with Tourette’s can be as equally effective in life as those without,” Dr. Murphy said, citing Tim Howard as an example. Living with chronic Tourette syndrome since childhood, Howard went on to be an amazing goalie, helping the U.S. team reach the final rounds in the World Cup. During the match, he broke the record for most saves in a World Cup match with 16. He was also named Major League Soccer Humanitarian of the Year in 2001 for his work with children with Tourette’s.

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Elijah is doing well in school. At one point, the hand wringing got in the way of his writing, so he found a solution by asking teachers if he could type most of his work. Math remains an encumbrance that he’s working to improve.

He also continues to play defense in soccer and third base in baseball. Now in his 11^th year of baseball, he’s playing up, meaning he’s good enough to play with a high school team even though he’s in middle school.

Although improved since finding the Rothman Center at age 10, his arms still twitch and he continues to repeat words and phrases frequently, so he continues with appointments at the Rothman Center. Like most people with Tourette’s, Elijah also has obsessive-compulsive disorder and anxiety, although his are not severe. Because the Rothman Center has an interdisciplinary team, he sees other clinicians for his associated disorders.

What Dr. Murphy and the Rothman Center were able to provide Elijah was access to clinical trials, improvement in managing his symptoms and hope.

“Elijah has said he will probably tic forever, but we know he really wants it to go away,” Maria said.

“We’ve been very happy coming here. It was a relief to find such a great resource for families like ours.”

The USF Rothman Center

Thelma Rothman and her family have been long-time supporters of our community’s children. Mrs. Rothman, who passed away Oct. 7, 2014, joined the ACH Hospital Board in 1982 and later served as its chair. She was the first chairperson of the All Children’s Foundation Board and later chaired the All Children’s Hospital Health System Board of Directors. She and her late husband, Maurice Rothman, founders of Kane’s Furniture, had a strong interest in children’s developmental and learning problems. They established the Rothman Chair to promote research as well as early interventions and treatment in these areas.

Dr. Tanya Murphy holds the ACH/USF Maurice A. and Thelma P. Rothman Endowed Chair in Developmental Pediatrics and directs the Rothman Center, which is in dedicated space in the All Children’s Child Development and Rehabilitation Center.

A specially trained team of experts at the Center helps provide a range of services, including cognitive-behavioral therapy, habit-reversal training and pharmacological and medical management of an array of disorders, including autism spectrum disorders. Habit reversal training, a behavioral method for managing tics or hair pulling behaviors, has shown promise in Tourette syndrome patients. The Rothman Center has a significant research focus on patients with Tourette syndrome, obsessive-compulsive disorder, autism spectrum disorders and trichotillomania (hair pulling).

The USF Health Morsani College of Medicine was recently selected as a Tourette Center of Excellence by the Tourette Syndrome Association as part of the Southeast Regional Center of Excellence Network. In addition, the Rothman Center is a member of the USF Neuroscience Collaborative, an ambitious program designed to accelerate progress in USF neuroscience research.

St. Petersburg,FL (June 25, 2014) — The University of South Florida completed a transfer of 1.4 acres of land to All Children’s Hospital Johns Hopkins Medicine, a move that symbolizes the long-term, shared commitment to continuing the training of the USF Health Morsani College of Medicine medical students. The land — donated by the state to USF in April — was transferred yesterday by USF as a gift to All Children’s Hospital. The property will be used to develop a research, education and training facility to support innovations in pediatric care and expand the future collaborative efforts of the two organizations.

The transferred land is adjacent to the existing Children’s Research Institute, located at 601 Fourth Street South, and the All Children’s Hospital Outpatient Care Center. The state-of-the-art facility built there will create construction jobs and permanent positions for faculty and staff, focused on making new discoveries and finding treatments for childhood diseases.

The new research and education space will complement the existing Children’s Research Institute (pictured here), where USF Health endowed professors have collaborated with All Children’s Hospital for more than 14 years.

In addition, the space will promote an interdisciplinary learning environment to enhance training of physicians in the USF Health and the All Children’s Hospital Johns Hopkins Medicine pediatric residency programs, as well as strengthen the education of USF Health medical students, health sciences undergraduate and graduate students, and postdoctoral fellows.

“Thanks to support from Governor Rick Scott, the Florida Cabinet and legislative leaders, All Children’s Hospital Johns Hopkins Medicine and USF Health can continue their focus on improving patient care through research, education and innovation,” said Jonathan Ellen, M.D., president and physician in chief at All Children’s Hospital and professor of pediatrics and vice dean, All Children’s Hospital at the Johns Hopkins University School of Medicine. “This collaboration shows the sustained commitment of both organizations to provide the best training for USF Health medical students and all our residents and strengthen the USF Health pediatric residency program affiliation with All Children’s Hospital Johns Hopkins Medicine.”

Governor Rick Scott said, “The transfer of the two acres of land to the University of South Florida and All Children’s Hospital will serve Florida families and open up opportunities to increase joint research, improve patient care, and enable the hospital to create jobs. As a father and grandfather, I know how important it is to meet the health care needs of our children. I look forward to seeing the continued success of All Children’s Hospital and USF as they care for our youngest patients.”

“The University of South Florida is pleased to transfer this land to All Children’s Hospital and looks forward to the development of a new, state-of-the-art medical research facility there,” said USF President Judy Genshaft. “We are excited about the economic development and health care impact that this project will have in St. Petersburg and the Tampa Bay region, especially for the youngest members of our community. We remain committed to partnering with All Children’s Hospital on projects like these that can improve health outcomes and quality of care, and we thank Governor Scott, the Florida Cabinet and our legislative leaders for their support for this critical initiative.”

“This new research and education space will complement our existing Children’s Research Institute, where USF Health endowed professors have successfully collaborated with All Children’s Hospital for more than 14 years, ” said Charles Lockwood, M.D., senior vice president for USF Health and dean of the USF Health Morsani College of Medicine. “We look forward to working with All Children’s Hospital to conduct joint research, with an emphasis on finding cures for childhood diseases. Together we are committed to translating our laboratory discoveries and advanced clinical knowledge into safe, cost-effective treatments to improve the health of all our children.”

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About All Children’s Hospital
All Children’s Hospital, a member of Johns Hopkins Medicine located in St. Petersburg, is the most advanced children’s hospital on Florida’s west coast and a U.S. News & World Report Best Children’s Hospital, ranking in the top 50 in three specialty areas. With over 50 pediatric specialties and 259 beds, All Children’s is dedicated to advancing children’s health through treatment, research, education and advocacy. Programs that include a Clinical and Translational Research Organization, pediatric biorepository and a new pediatric residency program are driving innovation in personalized pediatric medicine and child health. A network of 10 outpatient care centers in eight counties along with affiliate programs at regional hospitals makes All Children’s a leading provider of care for Florida’s children.

About USF Health
USF Health’s mission is to envision and implement the future of health. It is the partnership of the USF Health Morsani College of Medicine, the College of Nursing, the College of Public Health, the College of Pharmacy, the School of Biomedical Sciences and the School of Physical Therapy and Rehabilitation Sciences; and the USF Physician’s Group. The University of South Florida is a Top 50 research university in total research expenditures among both public and private institutions nationwide, according to the National Science Foundation. For more information, visit www.health.usf.edu

Suncoast Credit Union Foundation continues commitment to USF Health Pediatrics

Suncoast Credit Union Foundation recently made a gift of $50,000 to the Ronald McDonald Care Mobile (RMCM) Program operated by USF Health Pediatrics in Tampa Bay for the 2014-2015 academic year. This is the sixth consecutive year that Suncoast has supported the program. The gift is part of the ongoing USF: Unstoppable Campaign.

“The Care Mobile program aligns with our mission to support the health and emotional well-being of children in our communities,”says Mary Tlachac, executive director of Suncoast Credit Union Foundation. “And because of this partnership, thousands of children and their parents have the ability to heal and stay healthy together.”

In February 2006, the University of South Florida (USF) Health Department of Pediatrics partnered with Ronald McDonald House Charities of Tampa Bay for the first time to bring a RMCM Program to the Tampa Bay area. The RMCM is a 40-foot mobile medical and dental office, specifically built and equipped to deliver health services to children in the communities where they live.

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