August 22, 2017

Patients got a special treat last week when the Houston Texans cheerleaders paid them a visit and hosted their third annual mini Jr. cheerleading camp at Texas Children’s Hospital.

Equipped with fluffy pom-poms, T-shirts and hats, the cheerleaders spent an hour working with the patients on a dance routine, playing games, signing autographs and posing for photos. Excitement filled the room as the patients showed spirit for their hometown NFL team.

“It was such a wonderful surprise to be able to come today,” 11-year-old Gabriela Palacios said with a smile. “It’s a nice break from my daily routine here at the hospital.”

Following the camp, the cheerleaders visited neurology and neurosurgery patients at the bedside, bringing along pom-poms and autographed posters. For cheerleader Morgan O., the August 15 visit was something she had been wanting to do for a while. Being new to the squad last year, Morgan was not able to come to the camp. She was excited to learn she would have the opportunity this year.

“It is such an honor to be here today,” Morgan said. “I feel privileged to be part of these children’s lives even if it is for a short amount of time.”

Lesly Romero said the event meant a lot to her and her 3-year-old daughter, Briana Lopez, who has been an inpatient at Texas Children’s for almost two months.

“She hasn’t had the opportunity to get out and just have fun in a while,” Romero said. “So, this is just great.”

Click here to watch a video about the cheerleading event.

The goal of the partnership between Texas Children’s and the Houston Texans is to inspire children to lead healthier, more active lives through camps, programs and events all year long. Texas Children’s works alongside the Texans through community engagement and education programs to give Houston-area kids the tools necessary to make healthy choices throughout their lives. Last week’s mini Jr. cheerleading camp is just one of many of the exciting events we’ll take part in throughout the year. Click here to learn about some of the other ones.

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.”

Texas Children’s work to develop a novel non-invasive device for pediatric ureteral stent removal after a urinary tract procedure, with Baylor College of Medicine, Rice University’s Oshman Engineering Design Kitchen (OEDK) and Department of Bioengineering, as well as local life sciences commercialization firm Fannin Innovation Studio, was recently funded by the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK) of the National Institutes of Health (NIH). The $225,000 Small Business Innovation Research (SBIR) grant will be used to conduct further development of an electromagnetic device for removal of ureteral stents in pediatric patients.

Through the Rice undergraduate design program, a group of Rice University engineering students collaborated with Dr. Chester Koh, a pediatric urologist and surgeon at Texas Children’s and Baylor College of Medicine, to create the device in 2015, after Koh challenged the students to develop an innovative tool that would simplify ureteral stent removals, a fairly common procedure that is performed on more than 2,000 pediatric patients nationwide each year.

After extensively collaborating with Texas Children’s surgeons to better understand the challenges of the current procedure and the need for refinement, the collaborative team developed a non-invasive device to remove ureteral stents from children using a small magnetic bead and a powerful custom-built electromagnet that was designed with the assistance of 3-D printing at Rice’s OEDK labs. The electromagnet safely pulls on the tiny metallic bead that is attached to the ureteral stent to allow passage through the urethra without the need for an invasive procedure or general anesthesia.

This new innovation in pediatric ureteral stent removal is less painful and costs two-thirds less than the standard procedure because it avoids general anesthesia and the time and equipment necessary for a surgical procedure. The team’s invention has won two significant awards: the top prize at Rice University’s 2016 annual Engineering Design Showcase and the Grand Prize for Student Design at the 2016 annual Design of Medical Devices conference in Minneapolis.

“The development of pediatric medical devices lags adult device development by more than 10 years,” said Koh, who has a mechanical engineering degree from the University of California, Berkeley. “This is an important example of why academic partnerships are needed to advance pediatric medical device projects, since the pediatric medical device pipeline is currently limited. I applaud the Rice and Fannin Innovation Studio team members for showing their dedication and passion to the kids under our care at Texas Children’s.”

Prior to coming to Texas Children’s to establish the robotic surgery program in 2013, Koh co-founded a U.S. Food and Drug Administration-supported pediatric device consortium based in Southern California. He is creating a similar initiative at Texas Children’s, drawing on the top engineering and device development talent in the region.

The early work for this project was supported by the Denton A. Cooley Fellowship for Surgical Innovation of the Texas Children’s Auxiliary and by the Texas Children’s Department of Surgery, which continues to support the pursuit of innovation solutions to the unmet surgical needs of children.

The SBIR Phase I grant from the NIDDK will allow the team to implement design modifications to further refine the device as well as perform benchtop and pre-clinical studies with a target goal of larger SBIR Phase II grants.

August 16, 2017

Two weeks ago, Mark Wallace launched a four-week leadership challenge on his blog that highlights employees who demonstrate his Maxims of Leadership and poses a leadership question that you may respond to in the comments section of the blog post.

In September, the Corporate Communications team will collect all of your comments and draw the names of 100 commenters to attend a private event with the Houston Texans, including a behind-the-scenes tour of NRG Stadium, an autograph session with two Houston Texans football players and photos with the Texans cheerleaders.

So make sure you respond to the question at the end of Mr. Wallace’s blog post to be entered to win!

The autograph session and tour are a great way to bring the awesome players of two winning teams together. At Texas Children’s Hospital, everyone is a leader, and we are looking forward to hearing from leaders across the entire organization over the next few weeks.

This opportunity is one of the benefits of the Texas Children’s Hospital partnership with the Houston Texans football team. Since our launch in 2015, we have reached thousands of children in our local communities through fun, educational camps, school programs, special hospital visits and appearances with the Texans players, cheerleaders and TORO. Together, Texas Children’s and the Houston Texans are inspiring children in our community to lead healthier, more active lives.

Click here to watch a video about how Texas Children’s and the Houston Texans are leading in patient care and on the football field every single day.

Click below to read and comment on the two Leadership Challenge blog posts that are already on the blog.

Maxim 1 – “Leadership always influences or determines outcomes not some of the time, but all of the time.”

Maxim 2 – “Leadership applies to everyone.”

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.”

“When we were at Texas Children’s for countless tests and procedures, wrestling for an elevator was the last thing we wanted to do,” wrote a Texas Children’s patient family. “Thank you to all of the staff and doctors who we saw taking the stairs. Seeing staff walk up or down a few flights of stairs was a kind gesture to free up space.”

This recent Caught You Caring comment is one of many inspiring messages submitted to Texas Children’s Patient Experience Team following the launch of the hospital’s Step Up for Patients First initiative two months ago.

“Since this initiative began, we have received an influx of positive comments from patient families,” said Maggie Weimer, senior project manager of Patient and Family Services. “Comparing third quarter metrics in FY16 and FY17, we have seen a 70 percent drop in negative comments related to elevator use at the Mark Wallace Tower.”

In June, Texas Children’s launched the Step Up for Patients First initiative, which encourages employees and staff to put patients and families first, from the time they arrive at work to the time they leave. This includes providing patients and their families priority access to the elevators to reduce unnecessary wait times.

“Long wait times had been a significant, ongoing concern for patient families who depend on the Wallace Tower elevators to take them to and from their clinic appointments,” said Katie Kalenda Daggett, director of Patient and Family Services. “Because of the positive feedback from patient families, we learned this simple act of putting patients first when moving about on our public elevators has made a strong and positive statement about our commitment to them.”

Furthermore, to support the Step up for Patients First initiative, 2,083 Texas Children’s employees participated in the StairWELL challenge during the month of June, while making physical activity a priority in 2017. Prior to the stairwell initiative, patient families waited up to 30 minutes for an elevator at Wallace Tower. With more employees taking the stairs, wait times have improved significantly, allowing patients and their families to arrive at their appointments with ease.

“As appointment volumes tend to pick up going into the school year, we want to encourage employees to be aware and step in to help our patient families who may need our guidance,” Weimer said. “We all represent Texas Children’s and our patients and families are counting on us to help them throughout their visit.”

Step Up for Patients First is part of a broader initiative that will include future improvement efforts, such as encouraging employees to assist those who are lost and need help with wayfinding and optimizing employee visibility of the Caught You Caring Program, an organization-wide initiative that recognizes employees for their every day acts of kindness and their above and beyond efforts to show they care for Texas Children’s patients.

The Patient Experience Team continually receives feedback from patient families – including employees and staff – about small changes that can be implemented system-wide to promote a positive patient experience.

If you have suggestions for improvements or any additional feedback, contact the Patient Experience Team at patientexperience@texaschildrens.org

Orthopedic Surgeon Dr. Scott McKay was recently named a recipient of the 2017 Pediatric Orthopaedic Society of North America (POSNA) /Sociedad LatinoAmericana de Orthopedia Y Traumatologia Infantil (SLAOTI) Traveling Fellowship Award to South America.

McKay, alongside two other pediatric orthopedic surgeons, will spend the first two weeks of October in Argentina and Chile visiting and learning new techniques and exchanging ideas with their South American counterparts. The surgeons will end their trip in Brazil at the POSNA/SLAOTI meeting.

McKay, who specializes in injuries to the pediatric/adolescent athlete, was awarded the travel grant in March.

POSNA is a non-profit professional organization of over 1,200 surgeons, physicians and allied health members who are passionately dedicated to advancing musculoskeletal care for children and adolescents through education, research, quality, safety and value initiatives, advocacy, and global outreach to children in underserved areas.

The POSNA/SLAOTI annual traveling fellowship to South America allows three POSNA members a year to travel abroad and three members of an alliance society to tour in North America annually.