February 11, 2019

 

It’s Heart Month, which is always a special time at Texas Children’s as we celebrate our patients and families, the care we provide at our No. 1-ranked Heart Center and our many milestones. This year, we’re kicking off Heart Month celebrating yet another momentous first.

A team of experts at Texas Children’s Heart Center®, led by congenital heart surgeon Dr. Iki Adachi, became the first in the United States – and only the second in the world – to implant the Jarvik 2015 ventricular assist device (VAD), a groundbreaking new technology Adachi helped develop.

“Dr. Adachi is truly a pioneer and a world-renowned authority on mechanical heart support,” said Dr. Christopher Caldarone, Texas Children’s chief of Congenital Heart Surgery. “His work in the development of the Jarvik 2015 VAD has been tremendous and is a great example of the power of Texas Children’s in bringing new technologies to benefit our patients.”

Bridge to transplant

For patients with heart failure, a VAD can buy valuable time until they match an organ. In some rare cases, a VAD can be used as a permanent therapy for heart failure or can even improve heart function to such a degree that it makes a transplant unnecessary. VADs can either simulate heart function with pulsing action or allow a continuous stream of blood to flow through the heart. Continuous-flow VADs tend to be smaller and quieter but also more durable, and in recent years have yielded improved results in adult heart failure patients.

The Jarvik 2015 is the first and only implantable continuous-flow VAD designed specifically for small children. Development took more than a decade and was not without setbacks. After the previous prototype failed to gain FDA approval, the team of engineers enlisted Adachi to assist with crucial design modifications to the VAD’s pump while keeping the size of the device small – about the size of a AA battery. Following extensive testing in the Texas Medical Center, the FDA approved the Jarvik 2015 for clinical trial.

A chance at life

One of the most significant benefits of this new technology is that it allows the patient to become stronger, making them a better candidate for transplant. Such was the case with Katlyen Hickman.

You would never know by looking at Katlyen today that the smiling, energetic four-year-old needed multiple surgeries to save her life only a few months ago. She was born with complex congenital heart disease, including ventricular septal defects and small left heart structures, and despite numerous procedures and surgeries during her first years of life, her condition was rapidly deteriorating this past fall.

“It was clear she was moving in the direction of needing heart transplantation,” Adachi said. “She was admitted to the ICU and her heart was just getting worse and worse.”

Though the Jarvik 2015 had been cleared for clinical trials, it hadn’t been approved for commercialization. But because Katlyen’s case was so dire, and because she was too small to receive an adult-size VAD, Adachi and Texas Children’s were able to obtain expanded access from the FDA to implant the device. The fact that the team was already very familiar with the Jarvik 2015, following their extensive laboratory testing, helped facilitate the process with the FDA.

The results couldn’t have been better. Not only did the device keep Katlyen alive, but it also improved her blood flow, which helped her organs recover. This success paved the way for the next critical step in her journey – a heart transplant, which she received on November 23, 2018. It was the day after Thanksgiving. Only a month later she was discharged and spent Christmas at home with her family.

Adachi anticipates the Jarvik 2015 will do well in the upcoming multi-institutional clinical trial and hopes its availability may further accelerate the trend toward the use continuous-flow devices in children.

“Pediatric VAD support will continue to evolve as the pediatric mechanical circulatory support area matures,” he said. “The popularization of continuous-flow devices could be a landmark event that represents a paradigm shift in the field. And Texas Children continues to lead that shift.”

Learn more about Texas Children’s Heart Center and the Jarvik 2015 VAD clinical trial.

December 18, 2018

Experts from across the country recently convened for the fourth Symposium on Coronary Artery Anomalies, hosted by Texas Children’s Heart Center®.

The event was founded by leaders of Texas Children’s groundbreaking Coronary Anomalies Program – the first of its kind in the nation – as a way for caregivers, researchers and others to gather and discuss the diagnosis and management of patients with coronary artery anomalies, such as anomalous aortic origin of coronary artery (AAOCA), which can lead to the phenomenon known as sudden cardiac death (SCD), which usually occurs in young athletes.

“Before we began to really focus on these conditions, there was very little data about the potential risks or causes, which in turn led to controversy surrounding the proper ways to evaluate, treat and monitor children with these conditions,” said Texas Children’s cardiologist Dr. Silvana Molossi. “This event provides an open, dedicated forum for discussion and information sharing, and has become a valuable resource for experts nationwide who are involved in the diagnosis and care of patients with these rare conditions.”

The event featured comprehensive presentations by members of Texas Children’s Coronary Anomalies Program, as well as 11 visiting faculty from some of the country’s preeminent pediatric health care institutions, including Boston Children’s, CHOP, Stanford University, Columbia University, UT Southwestern, and the Heart & Vascular Institute at Hartford Hospital in Connecticut. Major topics included AAOCA, Kawasaki disease and myocardial bridges.

An addition to this year’s conference was a special Patients & Families Symposium.

“We were astounded by the response to the family symposium before it even started,” said Molossi. “We expected between 25 and 30 people to register – we ended up having nearly 80 in attendance.”

During this day-long event, parents and children attended talks that addressed topics such as the impact of coronary anomalies on families and the importance of counseling and shared decision-making when determining a plan of care. And in a session titled, “This is My Story: Patients and Families Living with AAOCA,” visitors had an opportunity to hear from Texas Children’s patients and families who have had similar experiences of unknowingly living with these life-threatening conditions, receiving crucial diagnoses and making the tough decisions that follow, undergoing open-heart surgery, and living a normal life in the aftermath. This emotional and powerful session was followed by discussions about the importance of networking and building a sense of community and collective support for people affected by coronary anomalies.

About the Coronary Anomalies Program at Texas Children’s

Seeing the need for more complete data and a more specialized approach to care, experts at Texas Children’s formed the Coronary Anomalies Program. The multidisciplinary core team of cardiologists, congenital heart surgeons, radiologists and researchers works together to provide the best treatment for patients with congenital coronary anomalies, study outcomes, and educate health care providers and the public about these conditions.

A cornerstone of this team’s approach is the development and use of a clinical algorithm to facilitate the diagnosis and management of these patients. The team presents cases in monthly multidisciplinary meetings to determine the best course of action for each patient, and then tracks the patients’ outcomes over time.

For Lauren Meredith and her family, this holiday season has been a time of joy and gratefulness after the care and expertise they received from the experts in Texas Children’s Colorectal and Pelvic Health Program. It stands in sharp contrast to the nightmare she and husband, Ryan, experienced a year ago when their third child, Ava, was born with a rare congenital disorder of the colon that doctors thought would make her unable to pass stool. With sparse information and little time to weigh their options, the anxious parents had to make the quick decision to have Ava transported to a hospital in the Texas Medical Center for surgery – a colostomy – which she underwent at just 12 hours old.

Unfortunately, their long, hard journey was only beginning.

“We were sent home with relatively little information on how to properly care for her,” Meredith said. “I was making 10 to 15 calls a day to the doctor’s office, the insurance company and the medical supply company, but no one was helping. We felt completely alone and unprepared to tackle this complex medical issue.”

At a breaking point, Lauren began a search for help and answers online, where she first read about Texas Children’s Colorectal and Pelvic Health Program. On Christmas Eve 2017, she sent an email to Dr. Timothy Lee, pediatric surgeon and program director, explaining their ordeal.

The next day, the Merediths got their own holiday miracle.

“Dr. Lee emailed me back – on Christmas Day – and three days later we had our first appointment,” Meredith said. “The care, from the minute we walked in, was like stepping into a different world. The communication was incredible. I really felt like I was being heard for the first time.”

In August 2018, the colorectal and pelvic health team performed an operation to repair Ava’s initial defect and assess her gynecologic anatomy. And this past November, Ava had her colostomy reversal. Her prognosis is excellent.

Today, Ava – who turned one year old on December 13 – is a happy, healthy little girl who loves when her older brothers, Jackson and Greyson, sing to her and build forts for her to play in. She loves to snack, especially tacos. And she loves cuddles with her dad when he gets home from work.

“The team at Texas Children’s has given us so much to be thankful for,” Meredith said. “They took the burden off us and made us feel like they were on our side. We could tell from the very beginning that the entire Colorectal and Pelvic Health Program cared about Ava and wanted the best outcome.”

The full spectrum of care

A child’s diagnosis with a congenital disorder of the colorectal and urogenital system can be a heartbreaking and trying ordeal for families. Since these conditions are rare and often complex – and because no two cases are exactly alike – some institutions may lack the expertise necessary to provide effective treatment.

Fortunately, a highly skilled, multidisciplinary team of specialists at Texas Children’s Hospital offers patients and families the full spectrum of care for these disorders in our Colorectal and Pelvic Health Program.

Watch the video to learn more.

The Colorectal and Pelvic Health Program comprises four different specialties – pediatric surgery, pediatric urology, pediatric and adolescent gynecology, and gastroenterology – and provides treatment for several disorders and developmental anomalies, including imperforate anus, hirschsprung’s disease, cloacal malformation, cloacal exstrophy, and severe idiopathic constipation.

Regardless of the disorder, the team works together to develop a customized approach to care for these complex, and often sensitive, medical issues.

“Many of these conditions can have an extreme negative impact on the self-esteem of a child,” said Dr. Paul Austin, director of Texas Children’s Complex Urologic Reconstruction Program. “Knowing that we can make a positive difference through the care that we provide is extremely rewarding.”

Specialists collaborate to identify the patient’s specific issues and determine the best path to a positive outcome and improved quality of life, whether through surgery, medication or some combination of treatments. Additionally, the team has focused on improving patient care through clinical research and development of best practice pathways to standardize and streamline clinical care for this complex patient population.

“This hallmark of the program is providing multi-disciplinary collaborative care,” said Lee, pediatric surgeon and program director. “Even though these conditions aren’t common, we’ve seen more and more of them at Texas Children’s as our patient volume has grown. Parents can be confident when they come to us that they will be receiving truly comprehensive, collaborative care delivered by experts who have been treating these kinds of patients for years.”

Learn more about the Colorectal and Pelvic Health Program.

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.