December 18, 2018

Texas Children’s Division of Otolaryngology recently hosted the 45th Annual Meeting of SENTAC (Society of Ear, Nose and Throat Advances in Children), one of the nation’s oldest and most respected ENT societies. It was the largest SENTAC conference ever, with nearly 300 national and international otolaryngology experts in attendance, including the largest ever turnout of allied health professionals.

“Multidisciplinary collaboration is one of the hallmarks of SENTAC,” said Dr. Deepak Mehta, Director of Texas Children’s Pediatric Aerodigestive Center and 2018 SENTAC president. “This event is not only for physicians, but also for audiologists, speech and language pathologists and therapists, advance practice providers, pediatricians, nurses and students. This experience is unique in that it brings us all together for a common purpose.”

The four-day event covered the entire spectrum of pediatric ENT topics, including sleep disorders, swallowing disorders, tracheostomy care and hearing loss. During the conference, over 60 presentations were given, including eight by experts from Texas Children’s – two of which won awards. Jessie Marcet-Gonzalez, CPNP, won first place for best podium presentation for her paper, “Effect of Inpatient Multidisciplinary Tracheostomy Team Rounds on Timely Outpatient Follow.” Texas Children’s audiologist Dr. Barbara Novak won second place for her paper, “Improving Loss to Follow-up: A Collaborative Citywide Initiation,” a project on newborn hearing screening in collaboration with Texas Children’s audiology clinical and cochlear implant specialist Dr. Samantha Lemelle, AuD.

Other event highlights included a banquet with live music and holiday lights at the Houston Zoo, and the first annual SENTAC Pediatric Otolaryngology Academic Bowl, presented by the Young Providers Committee. Texas Children’s took home the trophy, defeating teams from Rady Children’s Hospital in San Diego and Children’s Hospital of Wisconsin. Throughout the weekend, many said this was one of the best SENTAC conferences yet, both in terms of content and host venue.

“I feel pride in being part of Texas Children’s and all of us working together to put together such a fantastic meeting,” Mehta said. “The amazing support from Texas Children’s leadership and all the staff involved truly made it a success.”

December 11, 2018

A little over a year ago, Larissa Fletcher took a huge leap of faith and walked into Texas Children’s Family Fertility Center to carry out the plan she and husband made years earlier on the darkest day of their lives.

On that dark day, Larissa and her late husband John Fletcher learned he had stage four esophageal cancer, and would, at best, live another year. Knowing they wanted to give their then 1-year-old daughter, Emma, a sibling, the couple decided to freeze John’s sperm and store it at the Fertility Center’s state-of-the-art in vitro fertilization (IVF) lab until Larissa was ready to try to have another child.

Shortly after that day came, Larissa watched her embryologist zoom her microscope in on what would become the now 4-month-old Elliana “Ellie” Joy Fletcher. Using a leading-edge embryo monitoring system called the EmbryoScope, Larissa also was able to watch a video of Ellie from when she was just a few cells all the way up to the time she was ready to be transferred into her mother’s belly to develop and grow for the next nine months.

“I was in awe of all of it,” Larissa said of the video. “In that moment, everything became very real for me.”

Texas Children’s Family Fertility Center’s three EmbryoScopes bring to life what reproductive endocrinology specialists see under a microscope and then describe to their patients. The technology, which provides continuous time-lapse imaging of embryos as they grow, also enables specialists to identify the healthiest embryo to transfer to the patient, for improved IVF success rates.

Dr. Richard Cochran, the Family Fertility Center’s Laboratory Director, said he and his colleagues in the lab are looking at whether the EmbryoScope can also help improve patient outcomes. The technology, he said, allows clinicians to see how an embryo divides, which in turn gives them the opportunity to see certain abnormalities.

“Sometimes embryos will divide, and then the cells will remerge, and then re-divide,” Cochran said. “That’s very abnormal, and that’s something we would not see in a traditional incubator setting.”

In such a setting, clinicians typically look at an embryo two days after fertilization is attempted, again a day or two later and so on. What happens in-between observations isn’t captured, and could be an important predictor of developmental abnormalities. For similar logistical reasons, the EmbryoScope already has proven to be helpful at enabling specialists to identify the healthiest embryo to transfer to a patient.

“In the vast majority of laboratories, embryos are put in traditional incubators where you have to take them out and expose them to room temperatures to see them,” said Texas Children’s Chief of Reproductive Medicine Dr. William Gibbons. “With the EmbryoScope, handling of the embryos is minimized and visibility is 24/7, enabling us to ensue embryos are growing and reach the appropriate stages at the appropriate times before transplantation.”

Texas Children’s Family Fertility Center is the only location in Texas other than Dallas that is using the EmbryoScope. The center has been using the technology since it opened in 2014 and currently has three. One of the scopes is dedicated to research while the other two are for clinical use.

Larissa, a former Fertility Center patient and a pediatrician with the Texas Children Newborn Center, said her experience at the center was extraordinary from beginning to beautiful end.

“When I was eight weeks pregnant and had to move my pregnancy care from the Family Fertility Center to a traditional OBGYN, it was bittersweet,” she said. “The people there were like my second family.”

To learn more about the EmbryoScope and how clinicians with the Texas Children’s Fertility Center uses the technology, click here.

Texas Children’s Family Fertility Center has earned national and international recognition for advancing the understanding and treatment of reproductive disorders. Our reproductive endocrinology specialists are proud of the impact we have made on the lives of our patients, women and families across the globe. To learn more about our Fertility Center, click here.

November 12, 2018

Eighteen-year-old Angeles Vasquez was anxious and scared. For months, a painful wound had lingered on her right ankle. No matter what remedy she and her family tried, it just wouldn’t heal. Unable to find answers or relief elsewhere, they turned to Texas Children’s Hospital and our new pediatric Wound Care Clinic, a new initiative spearheaded by Chief of Plastic Surgery Dr. Edward Buchanan and Director of Surgical Advanced Practice Providers Ryan Krasnosky.

“Dr. Buchanan and Ryan were awesome,” Vasquez said “They gave me the medications I needed and taught me how to properly clean and care for the wound. It’s finally healing and they’re still checking in with me all the time to make sure I’m okay.”

The new Texas Children’s Wound Care Clinic – one of only a few in the country, and the first and only one of its kind in Texas – is a comprehensive center where patients can have a variety of wounds evaluated and treated by an experienced, multidisciplinary team of dedicated medical, surgical, nursing and advanced practice providers.

The team uses evidence-based, standardized treatment protocols – which are under constant scientific scrutiny – to develop individualized treatment plans for each patient. These care plans take into account factors such as wound origin and location, as well as patient and family lifestyle, to determine the best approach to maintenance and to prevent future wounds. Additionally, data from each case is carefully analyzed with the dual goals of improving clinical processes and ensuring care protocols provide the best possible outcomes.

“There is a huge need for this kind of care in Houston and across the United States,” said Buchanan. “We want to lead the way in pediatric wound care on the national level, developing scientifically supported protocols that become the standard of pediatric wound care. With our clinical volume and our dedication to treating these patients, we’re strategically positioned to accomplish this goal.”

Experts in the Wound Care Clinic currently see patients from across the Texas Children’s system at our Texas Medical Center campus, providing high-quality care for a wide range of conditions, including:

  • Animal bites
  • Chronic wounds
  • Deep pressure wounds and ulcers
  • Fragile skin and other skin issues
  • Gastrostomy or other tube issues
  • Soft tissue infections
  • Thermal skin injuries (that do not meet criteria for burn transfer)
  • Trauma
  • Wounds in babies with congenital anomalies

“These wounds are often complex and can take quite some time to heal,” said Surgeon-in-Chief Dr. Larry Hollier. “It’s wonderful for a patient to be able to see a team that has all the expertise and products available to heal these wounds in a timely fashion. Additionally, we have the ability to perform minor procedures to speed along the healing and are also able to directly schedule surgeries from the clinic if necessary.”

Still in its beginning phase, the clinic is currently held one day a week. However, in the months since the clinic’s opening, there has been a rapid increase in patient volume, and preliminary plans are already being made for expansion to West Campus and The Woodlands.

“The growth in volume is a testament to the high-quality care our patients are receiving,” Krasnosky said. “Families have been extremely pleased with the care we’re providing and they’ve voiced their appreciation for having a consistent ‘home’ for wound care.”

As the clinic grows, teams will continue to analyze data and lessons learned in order to further standardize clinical processes and care protocols. Long-term goals include the introduction of same-day surgical interventions, for wounds that require more invasive treatment. There are also plans for the integration of a comprehensive research component, with a basic science emphasis on wound healing and clinical research efforts focused on developing evidence-based wound care guidelines, as well as the creation of novel wound treatments and care assessment tools.

In the meantime, clinic care teams are laser-focused on providing the best possible wound care and improving outcomes for every patient who comes to us.

“The Wound Care Clinic is open to any and all wounds that practitioners need assistance with,” Buchanan said. “We hope to get involved early in the care of pediatric wounds within the Texas Children’s system, so as to decrease the time to healing and improve the quality of life of our patients. As our clinic expands, our capacity will expand, and we will be able to provide services to all patient populations. No wound is too trivial or small for an evaluation.”

November 6, 2018

As part of National Genetic Counselor Awareness Day on November 8, Texas Children’s recognizes the crucial role our genetic counselors play every day for our patients and their families. In fact, genetic counselor was named one of the “25 Amazing Healthcare Support Jobs” and one of the “100 Best Jobs” in 2017 by U.S. News and World Report.

The demand for genetic counselors continues to grow with the increase in our understanding of the genetic contributions to disease. As a liaison between the physician and patient, genetic counselors are an important part of the health care team. Specially trained in the areas of basic science, medical genetics, psychology and epidemiology, genetic counselors work closely with our physicians from various pediatric subspecialties to evaluate a family’s risk of an inherited medical condition, decide what genetic tests to order, and interpret and use the test results to provide guidance to patients and their families. With over 30 genetic counselors at Texas Children’s alone spread across many subspecialties, genetic counselors play a unique role that illustrates the importance of genetics in all areas of medicine.

“Since genetics is a very fast-paced and rapidly evolving field, we have to stay up to date with current genetic research and testing to provide patients with the most accurate information and best care possible,” said Andi Lewis, a Texas Children’s pediatric genetic counselor in the general genetics, neurofibromatosis, and cardiovascular genetics clinics.

Genetic counseling can be a very time-intensive process with a new patient appointment typically ranging from 45 to 60 minutes. Much preparation occurs prior to the appointment, which involves gathering a patient’s medical records and history, drawing the family tree or pedigree, and researching various possible diagnoses and recommendations for genetic testing options for the family.

Whether delivering good or difficult news to patients and their families, empowering them with the knowledge to make an informed decision lies at the heart of genetic counseling.

“With genetics being a growing component of many other subspecialties, there is a huge demand for genetic counselors to work within all areas of medicine so that we can help our patients and families understand the potential impact that genetics can play in their lives while supporting them throughout the process,” said Pilar Magoulas, pediatric genetic counselor at Texas Children’s and chief of the Division of Genetic Counseling at Baylor College of Medicine, Department of Molecular and Human Genetics.

Texas is proud to have over 100 genetic counselors with nearly 40 genetic counselors at Texas Children’s Hospital and Baylor College of Medicine alone. There are 37 genetic counseling graduate training programs across the United States and Canada. Baylor and the Department of Molecular and Human Genetics along with the School of Health Professions developed a genetic counseling training program and enrolled its first class of 8 students this fall.

For more information about Texas Children’s genetic counselors, click here. For more information on the genetic counseling profession, click here. For more information about the genetic counseling training program, click here.

October 29, 2018

Some of the brightest minds in neuroscience recently converged on the Jan and Dan Duncan Neurological Research Institute (NRI) at Texas Children’s Hospital for its fourth biennial symposium and workshop, in partnership with Baylor College of Medicine.

The special two-day event brought together nearly 300 physicians, scientists, patients, patient advocacy groups, pharmaceutical industry experts and leaders from the National Institutes of Health (NIH), the National Institute of Neurological Disorders and Stroke, and the National Institute for Mental Health, to address key issues in the field of neuropsychiatry, an intersectional branch of medicine that deals with mental illnesses caused by organic disorders of the nervous system.

Neuropsychiatric disorders are a leading cause of disability and take a tremendous toll on society. In the United States alone, one out of five adults lives with mental illness. The spectrum of mental illnesses is vast, ranging from the extremely rare to more well-known conditions such as depression, anxiety, schizophrenia, ADHD, addiction and sleep disorders. Symptoms and their severity can vary widely from patient to patient, which makes them difficult to physiologically measure. For these reasons, neuropsychiatric disorders are some of the least understood – and some of the most difficult to treat.

“These disorders are a major health issue all over the world, however, therapeutic interventions remain limited,” said NRI/Baylor investigator and child neurologist Dr. Hsiao-Tuan Chao. “There is a growing need to understand the organic factors behind mental illness to facilitate a better understanding of the brain, as well as to develop more effective treatment strategies.”

The symposium opened with a welcome address from Dr. Huda Zoghbi, director of the NRI, and this year’s co-organizer, Dr. Steven Hyman, director of the Stanley Center for Psychiatric Research at the Broad Institute of MIT and Harvard. The pair stressed the importance of identifying new research paths in order to develop targeted therapies that could not only help treat neuropsychiatric symptoms, but could also help mitigate or eliminate side effects and toxicities that far too many patients experience.

Over the course of the first day, presentations from leading experts addressed hot topics in neuropsychiatry. These included a discussion on how genetic mutations contribute to neuropsychiatric disorders; the involvement of neuronal networks in neuropsychiatric phenotypes; the impact of immune cells on these disorders; and a look into how adaptive deep brain stimulation could potentially help specific conditions. Each session gave way to a 20-minute moderated panel discussion on the topic at hand. This feature of the symposium is unique in that it leads to immediate discussion and active participation among the many different types of stakeholders present.

Following a day of stellar research presentations, the investigators split into three working groups that focused on Molecular Bases of Disease and Human studies, Circuits and Neuromodulation, and Young Investigators. The groups discussed not only everything they had heard over the course of the day, but also their vision for the next 20 years in neuropsychiatry, including the obstacles that currently exist and what is needed to overcome them.

The next morning, key points that had emerged from these discussions were shared with the audience. The working groups identified increased access to resources and funding as a major need. But unanimously, all of the young investigators noted the critical importance of building interdisciplinary, multi-institutional collaborations, with a focus on team science and data sharing.

“Building bridges between various disciplines aids in the identification of important areas of neuropsychiatry that require further investigation and therapeutic development,” said Chao. “Neuropsychiatry itself is an interdisciplinary field, and unraveling the causes for these conditions will require continued interdisciplinary collaborations to accelerate the pace of discovery.”

The proceedings will be published as a white paper in Science Translational Medicine, a leading weekly online journal and one of the event sponsors.

October 23, 2018

The New England Journal of Medicine (NEJM), one of the nation’s most respected peer-reviewed medical journals, has released a new study highlighting the groundbreaking work being done by the Undiagnosed Diseases Network (UDN), an National Institutes of Health-funded research consortium that includes the Jan and Dan Duncan Neurological Research Institute (NRI) at Texas Children’s Hospital, Baylor College of Medicine, Stanford University and other institutions.

Identifying the genes responsible for rare or unknown disorders using traditional approaches is time-consuming work and can take years, or sometimes even decades. And though genetic sequencing is now a routine part of the care people receive for these types of disorders, many patients are still left without a diagnosis. According to the NEJM study, the collaborative UDN model may already be changing that paradigm.

The study reports that the UDN defined 31 entirely new syndromes, and of 382 completed evaluations, 132 patients received diagnoses, a rate of 35 percent – all in just 20 months. The study also found that of the new diagnoses, 37 percent led to non-therapeutic changes in care, such as narrowing of diagnostic testing, and an amazing 21 percent led to changes in therapies for patients.

“This is a major accomplishment in genomic medicine and a giant step forward for these patients and their families,” said Dr. Huda Zoghbi, director of the NRI.

The UDN was established in 2014 with the mission of providing answers for the millions of patients and their families affected by mysterious and rare conditions, but who, after years of extensive testing, still hadn’t received a diagnosis.

The NRI and Baylor have been at the forefront of discovery in the UDN since its inception, jointly serving as one of seven original clinical sites, where doctors and health care providers, ranging from neurologists, immunologists, nephrologists, endocrinologists and geneticists, come together to help find the cause of participants’ symptoms. Baylor, one of the UDN’s two original sequencing cores, currently acts as the network’s sole DNA sequencing site. The NRI and Baylor were also selected to serve as the UDN’s first Model Organism Screening Center (MOSC), which was spearheaded by NRI investigators Drs. Hugo Bellen, Shinya Yamamoto and Michael Wangler.

“The UDN recognized that the resources we had in place and our high throughput made us the ideal candidate to serve as a MOSC site,” Bellen said. “Because of our success with model organisms and the appreciation physicians have for our work, there will likely be a proliferation of MOSC sites in the future.”

In-depth fruit fly studies at the MOSC have helped physicians and scientists identify genes responsible for rare and undiagnosed disorders, leading to the diagnosis of some of the UDN’s most difficult cases. This collaborative effort, which also includes the University of Oregon, has already directly influenced how clinicians care for patients – patients like Avery Reilly.

At only a few months old, Avery began showing signs of a neurologic condition. She could not sit until age 3 or crawl until age 5, and today she cannot walk or speak. An appointment with Texas Children’s neurologist Dr. Timothy Lotze revealed Avery had poor muscle tone, which was delaying milestones. That initial appointment led to years of doctor visits and countless tests, all of which failed to reveal the cause of Avery’s developmental and speech delays.

Then in 2014, the Reillys heard about the NRI’s involvement with the UDN and submitted Avery’s case. For the first time in years, the family had hope. Using exome sequencing, researchers discovered Avery had a new type of genetic mutation. Then a team at the MOSC, led by Wangler, studied the mutation in a fruit fly model to see how the genes were affected. At long last, the Reillys had a diagnosis. What’s more, the discovery of Avery’s mutation led to a change in her medications, which could help slow the progression of her disease.

“The fact that we are able to help the UDN accelerate science to find actionable changes in therapies is very exciting,” said Zoghbi. “Helping people, and working to solve severe medical problems through basic research, and through unfettered collaboration, is what our work is all about.”

The NEJM study is the first to provide a detailed description of the inner workings of the UDN. It presents an in-depth analysis of the referral and acceptance patterns, diagnoses, impact rates and follow-up scientific investigations of 1,519 cases that were referred to the UDN in the last two years.

As the study points out, the most unique feature, and perhaps the biggest contributor toward UDN’s success, is its model of multi-institutional collaborations. Teams of researchers and physicians from participating institutions all over the nation leverage their multidisciplinary expertise and resources to quickly find specific diagnoses for patients with extremely challenging clinical cases, with no additional cost to the patients.

In addition to the original clinical sites and sequencing cores, the UDN also included a coordinating center as part of its phase I deployment. In 2015, a web-based portal, the UDN Gateway, was launched for patients and families to participate in UDN. The network recently expanded its footprint from seven to 12 clinical sites and also added a central biorepository, a metabolomics core and a new MOSC site.

Though the UDN’s larger focus is currently gene discovery, it’s the work being done at the NRI and Baylor that will set up the network’s next evolution.

“Once a gene is discovered, it’s natural that the focus should shift to finding out what the genes do, what the molecular mechanisms are, if they’re linked to other diseases, or if they can be manipulated with drugs,” Bellen said. “That’s what we’re doing at the NRI and Baylor now, and that will be instrumental in the next phase for the UDN. When that time comes, we’ll be ahead of the curve.”

Learn more about the recent research breakthroughs and patient success stories from the UDN and MOSC.

About the New England Journal of Medicine
For over 200 years, the New England Journal of Medicine has rigorously vetted and compiled the latest medical research in support of physicians and their patients. From the first uses of anesthesia to the most recent cardiology and cancer treatments, the New England Journal of Medicine has helped generations of clinicians enhance their knowledge and improve patient care.

Today, with rigorously peer-reviewed research, topical reviews, interactive clinical content and cases, the New England Journal of Medicine is the trusted source for essential findings in medicine.

The Periwinkle Foundation and Texas Children’s Hospital have teamed up with H-E-B to offer limited-edition reusable shopping bags featuring original Making A Mark artwork created by children touched by cancer and blood disorders at Texas Children’s Cancer and Hematology Centers. Just in time for the holidays, the bags will be sold in various H-E-B locations in the Houston and McAllen area as an effort to help raise awareness about childhood cancer.

“We are proud to partner with H-E-B to create these unique grocery bags that spotlight two very special pieces of original artwork created by these young artists,” said Erin Locke, Community Programs Director at The Periwinkle Foundation. “Raising awareness about childhood cancer is so important, and we are very grateful that H-E-B has joined us in this initiative to help spread the word.”

The one-of-a-kind shopping bags highlight artwork from past Making A Mark artists, Bethany and Blanca. Lost in the Sunflowers by Bethany, 12, showcases a young boy in a cowboy hat admiring a vibrant sunflower in a sea of rich foliage while Untitled by Blanca, 15, depicts the different outlooks on life by showcasing the positive and negative through bright and dark colors.

“This project is meaningful to H-E-B Partners (employees) who have volunteered with The Periwinkle Foundation’s Arts in Medicine program at Texas Children’s Cancer and Hematology Centers,” said Lacey Dalcour-Salas, H-E-B Public Affairs. “We have showcased patient artwork through the Making A Mark exhibition at two of our store locations and look forward to sharing their inspiration with our customers while increasing awareness of childhood cancer with the creation of this reusable bag.”

Since 2001, The Periwinkle Arts In Medicine Program at Texas Children’s has brought unique opportunities for self-expression, empowerment and development of coping skills to patients and their families while enhancing the healing environment and treatment experience in a variety of settings including outpatient and inpatient care areas. Periwinkle’s Arts and Creative Writing Program culminates each year in Making A Mark®, a travelling exhibition of more than 350 pieces of art and creative writing by children and teens touched by cancer and other life-threatening illnesses.

These limited-edition bags will be available for sale at more than 30 H-E-B locations across Houston while supplies last.