September 10, 2018

On Tuesday, September 25, Texas Children’s No. 1 ranked Heart Center will open in Legacy Tower. To prepare for this historic milestone, multidisciplinary teams recently conducted simulations in the cardiovascular intensive care unit and cardiovascular operating room to test out the new patient care spaces before real patients are seen.

“Today, we are doing systems testing in our cardiovascular intensive care unit,” said Dr. Cara Doughty, medical director of Texas Children’s Simulation Center. “During these simulations, we have a number of different patients both receiving care as well as receiving escalations in care that can happen in the intensive care unit.”

In addition to multidisciplinary staff, patient families from Texas Children’s Family Advisory Committee participated in the CVICU simulations and provided their perspective on how much this space is going to change the way that care is provided to heart patients and their families at Legacy Tower.

“It’s really nice and comforting to me as a parent to see how much thought goes into it,” said Texas Children’s Family Advisory Committee member Christine Hanes. “I know that they aren’t just making a random decision on how to take care of my child. They’re actually testing it and making sure that they follow all the right procedures and that they do everything to optimize their care.”

Following the CVICU simulations, Texas Children’s conducted patient care simulations in the CVOR to test the system, the work flow processes, the placement of surgical equipment, as well as test the communication among multidisciplinary teams to ensure everyone and everything is ready before the first CVOR in Legacy Tower.

“For the CVOR, we had one patient but that patient was going through all of the different aspects of being a patient from registration to preoperative care to arrival to being in the operating room,” Doughty said.

Following each simulation, a one-hour debrief was held where staff from different disciplines came together to discuss what went well and what system processes need to be corrected before actual patients are seen.

“We want to make sure we’re well prepared, that the space is in tip top shape to be able to provide what we need for these critical patients,” said Kerry Sembera, assistant director of clinical practice for the Heart Center.

In preparation for the opening of Texas Children’s No. 1 ranked Heart Center on September 25, a series of systems testing was also conducted last month for acute care cardiology, the Heart Center Clinic and the Cath lab/HCRU.

Employees and staff can see more of Legacy Tower on Connect throughout the month. Texas Children’s Corporate Communications Team will feature a series of stories and videos on Connect promoting the Heart Center and sharing how we are preparing for this historic move into Legacy Tower.

Texas Children’s Physical Medicine and Rehabilitation Electrodiagnostic Laboratory has received Laboratory Accreditation with Exemplary status from the American Association of Neuromuscular & Electrodiagnostic Medicine (AANEM). Dr. Suzanne Woodbury is the laboratory’s medical director and said she is very excited to receive AANEM Laboratory Accreditation status.

The AANEM established laboratory accreditation criteria for electrodiagnostic (EDX) laboratories to ensure patients receive quality medical care in a safe environment. Laboratory accreditation provides patients, referral sources, and payers with a credible measure to differentiate the laboratory’s quality of care. The accreditation standards evaluate the diagnostic services and clinical operations essential to providing quality patient care, which include:

  • Clinical staff qualifications and continuing education
  • Physical facilities
  • EDX equipment
  • Protocols for performing EDX studies
  • Patient reports
  • Policies for ensuring the health and safety of every patient

Exemplary Status is the highest level of accreditation an EDX laboratory can achieve under the AANEM Accreditation Program. To be awarded Accreditation with Exemplary Status, physicians performing studies in the laboratory must:

  • Have completed a neurology or physical medicine and rehabilitation residency program; and
  • Have completed a minimum of three months of training in EDX medicine as part of a residency or fellowship program; and
  • Be certified by the American Board of Electrodiagnostic Medicine (ABEM), or by the American Board of Psychiatry and Neurology (ABPN) in clinical neurophysiology, or by the ABPN/American Board of Physical Medicine and Rehabilitation in neuromuscular disease.

AANEM is a nonprofit membership association dedicated to the advancement of neuromuscular, musculoskeletal, and electrodiagnostic medicine. For more information about AANEM, or to learn more about laboratory accreditation, visit www.aanem.org.

Texas Children’s Hospital has been recognized as a Clinical Research Center of Excellence (COE) for CDKL5 Deficiency Disorder and is one of only five pediatric institutions in the country to receive this honor.

The International Foundation for CDKL5 Research selected Texas Children’s and its academic partner Baylor College of Medicine as a Center of Excellence for its medical expertise and extensive clinical research experience in the field of Rett syndrome and Rett-related disorders including CDKL5 Deficiency Disorder.

“It’s an honor for our hospital to be chosen as a center of excellence for CDKL5 deficiency disorder research,” said Dr. Bernhard Suter, who is the director of the CDKL5 Center of Excellence at Texas Children’s. “We look forward to collaborating with other centers across the country to accelerate CDKL5 research in order to provide the best care possible for these patients.”

Once considered an atypical form of Rett syndrome due to its overlapping symptoms and similar medical needs among patients with either condition, the symptoms associated with CDKL5 deficiency disorder and its genetic cause are distinct from those of Rett syndrome. CDKL5 deficiency disorder is now considered a separate condition.

The CDKL5 gene provides instructions for making a protein that is essential for normal brain development and function. When the CDKL5 gene is mutated, patients with CDKL5 deficiency experience a variety of symptoms including difficult-to-control seizures, repetitive hand movements and severe neuro-developmental impairment. Seizures usually begin within the first three months of life, and can appear as early as the first week after birth.

As a Center of Excellence, Texas Children’s multidisciplinary CDKL5 clinic (housed in our Rett Syndrome Clinic) provides comprehensive care to patients by allowing them to see several specialists in the same clinic visit – including neurology, genetics, GI, pulmonology, physical medicine and rehabilitation – resulting in more personalized treatment plans for newly diagnosed patients.

“After an extensive search of top notch medical facilities, we found that Texas Children’s Hospital was the perfect pairing of medical expertise and research initiatives into this condition that so tragically affects those suffering with CDKL5,” said IFCR President Karen Utley, who also is a parent of a child with CDKL5. “We are proud to partner with Texas Children’s Hospital in order to improve the quality of life and to find a cure for our children.”

September 4, 2018

On August 23, an excited group of Walmart and Sam’s Club employees visited Texas Children’s for a special presentation and ribbon cutting for the Walmart and Sam’s Club Waiting Room on the 20th floor of Legacy Tower and part of the new Texas Children’s Heart Center®. They were welcomed by Chief of Pediatric Cardiology Dr. Daniel Penny, Vice President Judy Swanson and Texas Children’s Executive Vice President Mark Mullarkey, who spoke about Texas Children’s special partnership with Walmart and Sam’s Club through the Children’s Miracle Network.

“We couldn’t be more appreciative of the support we’ve had from Walmart and Sam’s Club over the years,” Mullarkey said. “Your generosity has made it possible for us to provide families with critically ill children the space they need to be together and to be comfortable.”

Even with a crowd of more than 30 attendees, there was plenty of room to move in the expansive new waiting area, which was specially designed as a haven for families with children who are dealing with some of the most complex medical issues – children like 11-year-old Jhett Skaggs, a Texas Children’s patient from Oklahoma, who with his dad, Brian, attended the event. Brian shared their story.

Jhett was born with cardiomyopathy, a rare heart disease. Doctors told Brian and his wife, Audra, that Jhett needed a life-saving heart transplant. They began researching options for treatment and decided Texas Children’s was the best choice. Experts from Texas Children’s flew to Oklahoma to transport Jhett to Houston, where he received a heart transplant at just 10 months old. For years, everything seemed to be okay, until at age 5 Jhett developed coronary artery disease. He would require another transplant. In 2012, Brian and Jhett moved to Houston to be closer to Texas Children’s. And though they had to wait nearly six years, Jhett finally received his second heart this past July.

“Everything worked out perfectly,” Skaggs said. “I wouldn’t change one single thing about our decision to come to Texas Children’s.”

After Brian’s moving story, Mullarkey turned the floor over to Trina Greer, Walmart Regional Vice President of Human Resources, who presented Texas Children’s with a check for nearly $1 million.

“It’s always my pleasure to watch our employees get excited about raising money for children who need our help,” Greer said. “I’m proud of the work we do and the funds we raise in the Greater Houston area to help Texas Children’s.”

Since 2005, Walmart and Sam’s Club have contributed more than $9.2 million. Last year, in addition to the funds raised in Houston area stores, the Walmart Foundation also gave Texas Children’s a gift of $500,000 for Hurricane Harvey Relief. In appreciation of this generosity, Texas Children’s leadership decided to dedicate the Heart Center’s new waiting area in honor of Walmart and Sam’s Club.

The new Heart Center – set to open on September 25 – will occupy eight floors and will feature four cardiac catheterization labs including integrated MRI scanner, four cardiovascular operating rooms, three cardiovascular ICU floors with 48 private rooms, two cardiac acute care floors with 42 private patient rooms, and a dedicated space for families.

In 2002, Dr. George Mallory helped establish Texas Children’s Lung Transplant Program and has built it into one of the world’s preeminent pediatric programs, with a reputation for collaborative, patient-centered care. This year, Mallory is passing the torch of medical leadership to Dr. Tina Melicoff, who will lead the program in partnership with surgical director Dr. Jeffrey Heinle.

“We all share Texas Children’s vision of taking care of children with complex lung conditions,” said Melicoff. “Cases that would be too complex to treat elsewhere are common at Texas Children’s. With our amazing team, and our focus on clinical and basic research, we can continue to build on Dr. Mallory’s incredible legacy of compassionate care and clinical excellence.”

Under Mallory’s distinguished leadership, the program has reached some extraordinary milestones. It is one of the largest lung transplant programs in the world – and the most active, with the highest clinical volume of any program over the past five years. Experts at Texas Children’s have performed more than 200 lung transplants, completing more in the past five years than any other pediatric program. Over the past ten years, the program has been one of only three that consistently performs transplants in infants and young children. It is also one of only two programs performing 10 or more pediatric transplants per year. And even with high volume, the program has a pristine record of below-average wait list times, with a median wait time of less than four months, shorter than most other programs.

Mallory, who is transitioning to the role of Medical Director Emeritus, attributes the program’s success to the collaborative and comprehensive approach to care, which includes surgery, pulmonary medicine and immunology services, infectious disease expertise, social work, nutrition, psychological care, basic and clinical research, and more.

“One of the things I’m most proud of that we’ve achieved is a fabulous multidisciplinary team,” he said. “That’s common language in modern medicine, but we really have a great team”

As the program moves forward under new leadership, that team will continue to work together for the same shared goals: improving outcomes, delaying chronic rejection and keeping children where they should be – with their families.

“Easily, the single best thing is to have engaged honestly and deeply with patients and families and see the majority of them capture years of quality of life,” Mallory said. “What we do here is much more than a dry scientific pursuit; it’s an amazing opportunity to see miracles happen.”

To learn more, watch the video.

The Southwest Pediatric Device Consortium (SWPDC), anchored at Texas Children’s Hospital and Baylor College of Medicine, recently received a prestigious P50 grant from the U.S. Food and Drug Administration. The five-year, $6.75 million grant will begin on September 1 and will allow SWPDC to leverage ongoing activities to expand and accelerate the development of much-needed pediatric medical devices. The five principal investigators include Drs. Chester Koh and Henri Justino of Texas Children’s and Baylor, Dr. Balakrishna Haridas of Texas A&M University, Dr. Maria Oden of Rice University, and Dr. Michael Heffernan of Fannin Innovation Studio.

SWPDC supports pediatric device innovators with the goal of addressing the shortage of needed novel medical devices for children, a public health problem that has been acknowledged by the FDA.

“A great need currently exists for medical devices designed specifically for children,” said Koh, founder of SWPDC and lead principal investigator, as well as a pediatric urologist at Texas Children’s and professor of urology, pediatrics and Ob/Gyn at Baylor. “Pediatric device development is challenging, but with this support from the FDA, our consortium will continue to assist pediatric device innovators along all stages of development with the goal of improving our care of pediatric patients.”

The past decade has been a period of growth in adult medical device innovation. Advances in devices for children, however, have lagged far behind. Why the disparity? Economics are partially to blame. The market for pediatric devices is smaller, and thus the return on investment lower. Then there are the clinical and regulatory challenges. Pediatric device projects may need an extended life cycle before they can be approved and exposed to the external market. As a result, pediatric surgeons and pediatricians have had to make do with what’s available, often using retooled adult medical devices, and without adequate testing in children.

“Significant technical (design and manufacturing), preclinical testing, clinical and regulatory testing challenges exist in the field of pediatric devices,” said Haridas, co-founder and co-PI of SWPDC (lead PI at Texas A&M) and professor of practice in biomedical engineering at Texas A&M. “This FDA-funded SWPDC is uniquely positioned to address these challenges across the pediatric device development and clinical translational cycle to deliver significant advances in treatments tailored for pediatric patients.”

Support from the P50 grant will enable SWPDC to provide services in several areas: unmet needs assessment, prototype development, product and technology acceleration services, and business acceleration services. Consortium members will evaluate and support projects, as well as advise innovators throughout the total product life cycle. Based on individual project needs, the consortium will direct investigators to specific resources, collaborators and industry experts, and will coordinate the services offered by its member programs to identify, evaluate and assist pediatric device projects.

SWPDC includes clinical, scientific/engineering, investment, regulatory and academic partners in the Texas Medical Center, the Greater Houston area and the southwestern U.S. Primary partners include Texas A&M University, Rice University, University of Houston and Fannin Innovation Studio, and includes others such as Biotex Inc., Children’s Hospital of San Antonio, Children’s Health in Dallas and Phoenix Children’s Hospital, with additional future sites. SWPDC was selected as one of five national consortia that are addressing the shortage of pediatric devices.

To learn more about the Southwest Pediatric Device Consortium, visit swpdc.org.

Each year in September, Texas Children’s Cancer Center goes gold to honor the courageous journeys of our patients and families who have been touched by pediatric cancer and to create awareness about the challenges these children and their loved ones face. It is also a special time to honor the Cancer Center’s staff and everyone involved in the care and support of those who come to Texas Children’s seeking our aid.

Today, you will hear from patients, family members, doctors and other medical staff as they explain why they Go Gold in September and what makes raising awareness about pediatric cancer so important. Additional comments from staff and Cancer Center supporters will be highlighted on Instagram @oneamazingteam.

Throughout the month, there are several events scheduled across the organization geared toward raising awareness about childhood cancer. Some of those event are listed below. Please check the Connect calendar and the Cancer Center’s Facebook page for additional details. Also, visit the Texas Children’s Blog for Cancer Center related posts throughout the month.

“We are proud to say that our Cancer Center helps children fight and defeat cancer every day,” said Dr. Susan Blaney, director of Texas Children’s Cancer and Hematology Centers. “We hope you will stand with us in Going Gold for childhood cancer, so that together, we can create a healthier future for children in our care.”

Upcoming cancer awareness activities:

  • September 4 at 2 p.m. – Main Campus Going Gold Parade and Ribbon Tying Event starting on fourth floor of the Pavilion for Women and ending on The Auxiliary Bridge.
  • September 4 at 6 p.m. – Vannie Cook Children’s Clinic in McAllen Going Gold Parade and Ribbon Tying Event
  • September 5 at 10:30 a.m. – West Campus Going Gold Parade and Ribbon Tying Event in front of hospital’s main entrance
  • September 6 at 10:30 a.m. – The Woodlands Going Gold Parade and Ribbon Tying Event in the main lobby of the hospital
  • September 8 at 2 p.m. – The opening of and reception for the Periwinkle Foundation’s Making A Mark exhibit on The Auxiliary Bridge. The exhibit, which highlights the art and creative writing by children touched by cancer and blood disorders at Texas Children’s Cancer and Hematology Centers, will be in the bridge throughout the month.
  • September 13, 20 and 27 at 1 p.m. – KPRC Channel 2 will air segments highlighting the Cancer Center.
  • September 13-14: International Pediatric Thyroid Cancer Conference in Cullen Auditorium at Baylor College of Medicine.
  • September 14 at 10:30 a.m. – Be the Match Patient Walk on the eight floor of the Cancer Center in the Bone Marrow Transplant Unit
  • September 16-19 – Houston City Hall will be lit gold
  • September 21 – The President of Botswana Mokgweetsi Masisi to visit Cancer Center
  • September 25 at 9 a.m. – The annual Hyundai Hope on Wheels Tour will stop at Texas Children’s in support of research and programs that bring us closer to better treatment and possible cures to cancer. The tour is a united effort of Hyundai dealers who travel the country to present Hyundai Scholar grants to children’s hospitals.

To learn more about Texas Children’s Cancer Center, click here.