October 3, 2017

Dr. Peter J. Hotez is the 2017 recipient of the Raymond and Beverly Sackler Award for Sustained National Leadership for his far-reaching work in the areas of neglected tropical disease (NTD) research and vaccine development.

Hotez is dean of the National School of Tropical Medicine at Baylor College of Medicine where he is also professor of pediatrics and molecular virology and microbiology. He serves as the director of the Texas Children’s Hospital Center for Vaccine Development, where he leads a unique product development partnership for developing new vaccines for hookworm infection, schistosomiasis, Chagas disease, leishmaniasis, and SARS/MERS, diseases that affect hundreds of millions of people worldwide.

In 2006 at the Clinton Global Initiative, he co-founded a Global Network for NTDs to provide access to essential medicines for hundreds of millions of people. Hotez was among the first to predict Zika’s emergence in the U.S. and is recognized as an authority on vaccines. He is an outspoken leader of national efforts to educate the public about vaccines amid growing misconceptions about them, and he has appeared on BBC, CNN, Fox News and MSNBC. Hotez is founding Editor-in-Chief of PLoS Neglected Tropical Diseases and an elected member of the National Academy of Medicine.

September 26, 2017

Texas Children’s Hospital is proud to announce its Adult Congenital Heart Disease Program recently earned Comprehensive Care Center accreditation from the Adult Congenital Heart Association (ACHA). Texas Children’s Adult Congenital Heart Disease Program is the first in Texas to receive this esteemed designation.

“We are honored to earn ACHA accreditation for the comprehensive care we provide to our patients each day,” said Dr. Wayne J. Franklin, director of Texas Children’s Adult Congenital Heart Disease Program. “As one of the largest programs in the nation, we are proud this designation will heighten the standard of care for the more than 1 million adults in our country who are living with a congenital heart defect.”

Texas Children’s Adult Congenital Heart Disease Program received accreditation by meeting ACHA’s criteria – which includes medical and surgical services and personnel requirements – and going through a rigorous accreditation process, both of which were developed over a number of years through a collaboration with doctors, physician assistants, nurse practitioners, nurses and adult congenital heart disease patients.

“This accreditation further validates the coordinated surgical and medical care we deliver,” said Dr. Charles D. Fraser Jr., surgeon-in-chief and chief of congenital heart surgery at Texas Children’s. “Our dedication to tracking patient outcomes allows us to continually improve quality of care and optimum results for our patients.”

Patients of Texas Children’s Adult Congenital Heart Disease Program receive seamless continuation of care from birth through adulthood. As a pediatric patient transitions to their adult years, the multidisciplinary team of experienced congenital heart disease specialists advises them on health and lifestyle choices for their adult needs, including physical challenges, exercise options and family planning.

For more information about ACHA click here. To learn more about Texas Children’s Heart Center, ranked No. 1 nationally in cardiology and heart surgery by U.S. News & World Report, please click here.

On September 22, Dr. Martha Curley, the 2017 recipient of the Thomas Vargo Visiting Professorship in Pediatric Critical Care Medicine, presented two lectures to residents, fellows, APP’s, physicians and nurses during her visit to Texas Children’s including Pediatric Grand Rounds  titled “Team Science – Answering Complex Clinical Questions Together.”

Curley is the Ellen and Robert Kapito Professor in Nursing Science at the University of Pennsylvania School of Nursing. She also holds a joint appointment in Anesthesia and Critical Care Medicine at the University’s Perelman School of Medicine and is a nurse scientist at Boston Children’s Hospital.

Through several decades of outstanding high quality nurse-led research that engages all members of the clinical team, Curley has transformed the ICU experiences and outcomes of countless critically ill children and their families all over the world.

September 12, 2017

A 4-year-old child undergoes a Fontan procedure to correct a heart problem. The child’s medical team is unaware that the proposed post-surgical plan of care may endanger not only the patient but also the patient’s family – and is also financially wasteful. If the care team is unaware of these potential risks, how can they offer the patient and patient’s family the best, most appropriate care that yields the best possible outcomes?

As one of the top five pediatric hospitals in the country, Texas Children’s cares for many patients with a number of medical conditions. Across our hospital system, care teams follow clinical standards related to specific medical conditions to ensure the best care is delivered to the right patient at the right time, leading to improved long-term outcomes.

“Clinical standards provide a way to align our clinicians, families and other organizations with a more streamlined approach to improve the safety, quality and cost efficiency in the delivery of patient care,” said Dr. Charles Macias, chief clinical systems integration officer at Texas Children’s and director of the Center for Clinical Effectiveness and Evidence Based Outcomes Center. “By allowing this type of standardization, hospitals can minimize wasteful expenditures caused by medical errors and ordering of unnecessary tests which can lead to inefficiencies in health care.”

From developing patient care guidelines for post-surgical care to treating common conditions like asthma and diabetes – among many other clinical conditions – our health care teams rely heavily on the instrumental work of Texas Children’s Evidence Based Outcomes Center (EBOC). The team reviews and translates scientific evidence into clinical standards that detail the essential steps in the care of patients with a particular clinical condition.

“Once a specific disease is selected, our team conducts a thorough review of evidence using the GRADE methodology,” said EBOC Research Specialist Andrea Jackson. “We review clinical questions and assess potential benefits and harms of different treatment options. We guide multidisciplinary teams to incorporate clinical expertise from our physician and nursing partners as well as input from patient family advocates on their own experiences into the development of practice recommendations based on available evidence regarding the specific clinical condition.”

Since the opening of the EBOC in 2010, the team has developed 95 clinical standards, some of which have led to publications in peer-reviewed health journals. In addition to the Connect website, Texas Children’s clinical standards for medical conditions are available here on the Outcomes and Safety external site.

“We are adding new clinical standards to that site about every three months,” said Anne Dykes, assistant director of Texas Children’s Outcomes and Impact Service. “All 10 years’ worth of work that we’ve built internally to help our own clinicians and those across our system, we’re now making available to the public. These standards are not just for physicians, clinicians and administrators at other hospitals, but also for patient families to help them understand the essential steps in the care of patients with a particular condition.”

The center also provides an evidence-based practice course that has educated more than 150 health care professionals on how to develop practice guidelines. Since 2007, more than 300 physicians, 275 nurses along with many of our patient family advocates have participated in guideline developments to enhance patient outcomes.

Additionally, the EBOC has launched a national collaborative with 11 other children’s hospitals to bring clinical standardization across the nation.

“Through this strategic collaboration, we are identifying where clinical standards could be done in unison so that we could all share in our products and still offer an opportunity to tailor them to our own individual institutions,” Macias said. “We have a national need for the science of it and a local need for the process of care delivery.”

Click here for a complete list of the EBOC’s 95 clinical guidelines developed to treat specific medical conditions.

August 22, 2017

On August 5, more than 450 patients and families traveled from all over the country for the 2017 Texas Children’s Newborn Center family reunion. The reunion celebrated former patients who graduated from the Newborn Center in 2016 after spending 10 days or more in our neonatal intensive care unit (NICU).

The reunion was held at Texas Children’s Pavilion for Women where parents shared stories of hope and triumph with other NICU families and reconnected with the nurses and doctors who delivered life-saving care to their critically ill babies.

“The NICU reunion is one of the most special times of the year for us,” said Texas Children’s Chief of Neonatology Dr. Gauthum Suresh. “The families were so grateful to be able to come back and share the great progress their babies have made. It gave them the opportunity to visit with the employees, physicians and other families that they spent so much time with while being cared for in our NICU.”

Highlights from the reunion included remarks from Suresh, Newborn Center Vice President Judy Swanson, Newborn Center Family Advisory Committee (NFAC) members Desiree Bradley-Collins and Katy Haynes, and blessings from Texas Children’s chaplain Naguib Kedeas.

The NICU reunion also offered children’s entertainment including a DJ, games, photo booth, face painting, crafts, airbrush tattoos, appearances from Minnie Mouse, SpongeBob Square Pants and Pikachu, and guests enjoyed a good old-fashioned Texas barbecue.

The Newborn Center team thanked everyone who helped organize this successful event including Texas Children’s NFAC Committee and Bad Pants, an organization that has raised more than $1 million to support the Newborn Center through the annual Bad Pants Open golf tournament.

When Bristol Dunlap was born, she was perfectly healthy. But by the time she was three months old, she was failing to reach her milestones and began showing worrisome symptoms.

“She could not lift her head up or sit upright, her body was unusually floppy, and her left eye began turning inward even though her vision was fine,” said her mother Evonia Dunlap. “As my daughter grew older, she was slow to crawl, stand and walk, and had difficulties in chewing, swallowing and talking.”

Bristol was diagnosed with congenital hypotonia which explained her poor muscle tone throughout her body. While therapy helped her daughter sit, walk and talk, there was one thing Dunlap wanted to know: What caused Bristol to develop hypotonia?

After seeing many specialists and undergoing a battery of diagnostic tests with still no answer, the family’s five-year medical odyssey ended at the Jan and Dan Duncan Neurological Research Institute (NRI) at Texas Children’s, where they were referred to neurologist Dr. Hsiao-Tuan Chao and Dr. Michael Wangler, geneticist and assistant professor of Human and Molecular Genetics at Baylor College of Medicine.

Through the NIH-funded Undiagnosed Disease Network (UDN), which brings together experts from across the country to help solve mysterious medical conditions by searching for their genetic basis, Chao and Wangler learned of a 7-year-old boy who exhibited symptoms similar to Bristol’s and also carried a point mutation in the Early B-Cell Factor 3 (EBF3) gene.

After re-examining Bristol’s exome sequencing results, they found she, too, carried the same mutation that produces a defective EBF3 protein. Since this protein is a master regulator of hundreds of other genes, even the tiniest alteration in its function could potentially cause widespread damage to the nervous system and muscles.

A referral center for undiagnosed diseases

Like the Dunlaps, many patient families are referred to Texas Children’s because of our renowned expertise and specialization in the diagnosis of diseases that are rarely seen and often unrecognized. Besides bringing together experts in genetics, pediatrics and neurology at Texas Children’s and its academic partner, Baylor College of Medicine, the UDN unites clinicians and scientists from across the country to help solve the most difficult medical cases. It is one of seven UDN sites nationwide.

More than 50 percent of UDN patients exhibit neurological symptoms. Texas Children’s chief of Neurology Dr. Gary Clark is one of the co-leaders of the UDN program at Texas Children’s and Baylor, and works closely with Texas Children’s neurologist Dr. Lisa Emrick in solving these mysterious neurological disorders.

“When a patient is referred to our UDN site, their DNA sample is submitted for sequencing,” said Emrick. “We conduct phenotyping and provide our UDN and NRI partners with the clinical patient data they need to help identify variant genes that may be responsible for a patient’s disease. Before advanced technologies like sequencing, only a small percent of these cases could be diagnosed.”

In addition to state-of-the-art medical imaging, metabolomics, and genetic testing including genome sequencing and exome sequencing, clinicians and researchers in the UDN rely on the Model Organism Screening Center (MOSC), where genes are studied in fruit flies to help diagnose patients. The center is led by Dr. Hugo Bellen, professor of Molecular and Human Genetics and Neuroscience at Baylor; Dr. Shinya Yamamoto, NRI investigator and assistant professor at Baylor; and Wangler. This dynamic team uses fruit flies, Drosophila melanogaster, to study new disease candidate genes and variants. They also closely collaborate with researchers at the University of Oregon in generating zebrafish models to study origins of disease.

In the MOSC, researchers combine bioinformatics analysis and experimentation in these ideal organism models to determine whether a specific variant identified in the genome of the patients may be responsible for the disease. “Integration of human genomics and experiments in simple model organisms such as fruit flies and zebrafish greatly facilitates disease diagnosis and mechanistic studies,” said Bellen.

“An exciting technique we developed is a way to humanize a fly gene,” said Yamamoto. “By knocking out the homologous gene in the fly and replacing it with the human gene, we can test the specific variant found in the patient to see how well it performs.”

Since fruit flies share many similar genes with humans, they have become a powerful model organism for the study of genetics. To study human disease in fruits flies, scientists mutate, or disrupt, the same gene that is known or suspected to cause the disease, and then figure out why mutations with this gene leads to disease.

Through collaboration with the UDN, Texas Children’s and Baylor continue to make significant strides in helping to accelerate the diagnoses of previously undiagnosed and rare neurological conditions.

For the Dunlap family, this provides a source of encouragement.

“While the journey to find a cure for our daughter’s illness has just begun, we are happy to finally have some answers,” Evonia said. “We are thankful for the pioneering work being done by physicians and researchers at Texas Children’s.”

August 15, 2017

The National Ebola Training and Education Center (NETEC) recently partnered with Texas Children’s to host a groundbreaking Pediatric Simulation Conference.

Held on August 10 and 11 at Texas Children’s Hospital West Campus, the conference was the first pediatric simulation course of its kind for the NETEC, which is supported by the Centers for Disease Control and Prevention (CDC) as well as the Office of the Assistant Secretary for Preparedness and Response (ASPR).

The NETEC is comprised of faculty and staff from Emory University, the University of Nebraska Medical Center/Nebraska Medicine and the New York Health and Hospitals Corporation, Bellevue Hospital Center. All three of these health care institutions have safely and successfully treated patients with Ebola and have worked diligently to share their knowledge with other health care facilities and public health jurisdictions.

These adult institutions receive funding to train all of the CDC-funded U.S. Ebola treatment and assessment centers in hospital preparedness. They have hosted successful training and simulation courses but none have been pediatrics based. The NETEC chose to come to Texas Children’s to host its premiere Pediatric Simulation Course because of the knowledge and expertise the health system has honed during the past few years since the most recent Ebola outbreak in 2014.

Less than a year after the outbreak, Texas Children’s built and opened the unique Texas Children’s Special Isolation Unit (SIU) so that the health system would be prepared to handle emerging infections as an institution. As a result, the state and the CDC designated Texas Children’s Hospital as one of several pediatric Ebola treatment centers countrywide.

Texas Children’s SIU is the only one of its kind in Texas and the southwest region, and is among the few in the United States designated just for children. Located on the fifth floor of West Campus, the eight-bed unit is fully equipped to care for any infant or child with a serious communicable disease and has all of the measures available to assure safety of the health care team, other patients and their families.

Children coming to the SIU will receive top notch care from a team of highly-trained staff, led by Dr. Amy Arrington, medical director and nursing leader, Sondra Morris.

“This was a great opportunity to show off our unit, our amazing team and our intuition,” Arrington said. “I am quite proud of how hard the SIU team has worked to make sure everyone at the conference had the best possible experience, and I know they all left here knowing Texas Children’s Hospital is more than prepared for any serious communicable disease in the pediatric population.”

Approximately 35 people from around the nation attended the pediatric simulation conference, which consisted of both lectures and clinical simulations, led by 10 NETEC faculty and 10 SIU course directors. Examples of topics covered included: donning and doffing, nursing care considerations in a pediatric biocontainment unit, ethical concerns, and immersive pediatric simulations held is the SIU.

Barb Craft, a clinical service line director with Kapi’olani Medical Center for Women & Children in Honolulu, attended the conference and said it and Texas Children’s SIU were amazing.

“Your SIU is so well thought out and a model for any isolation unit, be it adult or Pediatric,” Craft said. “I would highly recommend this course and would like more of Dr. Arrington and her staff’s experience shared in future offerings.”