July 24, 2018

It’s been two months since Texas Children’s Legacy Tower opened its doors for the first time to care for our most critically ill patients. Since May 22, 2018, our critical care, surgical and radiology teams have been extremely busy.

“We’ve seen over 300 ICU patients since we moved into Legacy Tower so the space is being well used,” said Shannon Holland, director of Nursing for critical care services. “We’re excited that our patients are getting the care they need in the place they need it with a lot of family amenities that they didn’t have in West Tower.”

Besides caring for patients in the pediatric intensive care and transitional care units, our surgical teams have been hard at work. Between May and June, the hospital’s surgical volumes have tripled. Approximately 330 surgeries have been performed since Legacy Tower opened, which equates to about 1,400 surgical hours.

“The first two days, we had a few rooms open, but since then, every room is full almost all day,” said Janet Winebar, assistant vice president of Perioperative Services. “We’ve seen a real change in the intraoperative MRI cases since the MRI is located completely adjacent to the operating room, resulting in more efficient delivery of care. Prior to this, we had to transport patients down to the MRI suite on a different floor and then back to the operating room.”

While being in the intensive care unit can be tough on patients and their families, many of them are giving the design of Legacy Tower a thumbs up. Patient families have expressed how comfortable they are in their new, much larger spaces, and how warm and inviting the new amenities and environment offer them.

“To have an ICU that has a comfortable bed and you never have to leave your kid’s side is really important,” said Clare Bensh. “For a baby who sadly has never been outside, it’s at least the next best thing to turn her around in the bed and she can have a lot of natural light. I think it’s a better environment for her to thrive in.”

Dr. Frank Gerow, an orthopedic surgeon and one of the leaders for the Legacy Tower project, credits our team’s steadfast dedication to the success of the phase one opening of Legacy Tower.

“The reason this whole process has come off as flawlessly as it has is because of the expertise and the experience that the directors, the executives and that the staff to this hospital bring,” Gerow said. “They’re the reason this has worked as well as it has.”

Meanwhile, excitement is building once again. In less than 60 days, the second phase of Legacy Tower will open.

On September 25, Texas Children’s Heart Center®, ranked No. 1 in the nation for cardiology and heart surgery, will move into Legacy Tower. The Heart Center 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.

“The Heart Center staff is very excited,” Winebar said. “They are collaborating together across disciplines from the CVOR to the CVICU and cardiology, to ensure we make this space work to benefit our patients and their families.”

Patients with Texas Children’s Cancer Center recently enjoyed a close-up look at the Houston Astros Commissioner’s Trophy during an event hosted by the baseball team and the Sunshine Kids Foundation in the Cancer Clinic on the 14th Floor of Wallace Tower.

Die-hard Astros fans and baseball enthusiasts alike joined in on the fun and beamed at the 24-inch tall, 30-pound, sterling silver trophy awarded by the Commission of Baseball to the Major League Baseball team that wins the World Series.

“Wow!” said 9-year-old Astros fan and Cancer Center patient Grant Pace. “This is so cool.”

In addition to getting their pictures taken with the trophy, patients received a goodie bag from the Astros and got the opportunity to meet Orbit, the baseball team’s mascot. Patients also participated in various crafts, including making a frame for their pictures with the trophy.

Jennifer Wisler, director of children’s services with the Sunshine Foundation, said the event was a way to distract patients and families from what can be very trying times when they come to the hospital for a visit.

“We are happy to make what might be the chance of a lifetime happen for so many patients and their families,” she said. “We aim to put smiles on children’s faces and there are a lot of smiles here today.”

Bobby Trefzger, the trophy coordinator for the Astros, said events like these mean a lot to the Astros. “It’s amazing to see the smiles on people’s faces, especially the faces of children like these,” he said.

For more information on the Sunshine Kids Foundation, click here.

July 17, 2018

On July 9, Texas Children’s Hospital and the Angelman Syndrome Foundation celebrated the official opening of the Angelman Syndrome Clinic at Texas Children’s, one of only seven Angelman syndrome-specific clinics in the United States – and the first in Texas.

Several patient families gathered on the 16th floor of Wallace Tower to attend the ribbon cutting ceremony. Debbie Sukin, the daughter of the late Dr. Ralph Feigin, delivered the opening remarks and shared how this new clinic will benefit her 16-year-old son Jacob and so many other children diagnosed with Angelman Syndrome.

“The hardest part of advocating and managing a child with Angelman Syndrome is trying to understand what might be wrong when they aren’t feeling right, looking right or acting right,” Sukin said. “We’re confident that this multidisciplinary clinic here at Texas Children’s will provide all children the expertise and best chance at meeting their maximum potential and provide guidance to ensure the best outcome.”

Occurring in one in 15,000 live births, Angelman syndrome is a neurogenetic disorder often misdiagnosed as autism or cerebral palsy that causes severe neurological impairment. Often times, these patients experience developmental delays, lack of speech, seizures, and walking and balancing disorders.

With the creation of this new clinic established through the generosity of donors and in partnership with the ASF, patients and their families now can access multiple specialists – experts in Angelman syndrome, clinical geneticists, neurologist, psychiatrist, speech language pathologist, genetic counselors and social work – in one setting rather than visiting multiple locations across the nation to manage and treat this disease.

“Thanks to the help of the ASF, we are proud to further our mission of providing very specialized care for patients with Angelman syndrome,” said Chief of Neurology Dr. Gary Clark. “Given the science that’s being developed at the NRI at Texas Children’s in genetics and neurology, we are making great strides in helping these patients.”

The ribbon cutting event also included remarks from Dr. Carlos Bacino, chief of the Angelman Syndrome Clinic, Carrie Rys, assistant vice president, and Eileen Braun, executive director of the Angelman Syndrome Foundation, whose organization donated $50,000 to advance Angelman syndrome research at Texas Children’s.

“Opening this clinic brings us one step closer to our commitment to establish a network of clinics across the country,” Braun said. “We could not be more proud to support Texas Children’s and their remarkable team of professionals in bringing this clinic to life. We look forward to impacting the lives of so many more families.”

Click here to learn more about our Angelman Syndrome Clinic at Texas Children’s.

When Kristine Hartin’s son was born almost a year ago, she was not prepared for the emergency cesarean section and almost four-week stay in the Neonatal Intensive Care Unit at Texas Children’s Hospital The Woodlands.

Unbeknownst to the first-time mom, her son, Reid, had pituitary stalk interruption syndrome, a congenital abnormality that can cause jaundice, congenital abnormalities and low blood sugar levels. Reid’s diagnosis, in addition to his complicated delivery and low birthweight, prompted doctors at St. Luke’s Hospital in Houston where Kristine delivered, to transfer him to Texas Children’s Hospital The Woodlands, which is close to their Montgomery County home.

During his stay, Reid received expert pediatric care from physicians in a variety of specialties including pulmonology, nutrition and occupational therapy. Slowly but surely he began to gain weight and progress in other areas. At 4 weeks old, Reid’s doctors told his parents their infant was ready to head home.

“I was excited but I was also scared,” Kristine said. “All I could think about was how I was going to manage his care.”

“Transition from the NICU to home is a very exciting time for infants and families, but it can be an incredibly stressful time as well,” said Dr. Candice Allen, medical director of the High-Risk Neonatal Follow Up Clinic at Texas Children’s Hospital The Woodlands, also known as the SOAR Program. “Parents typically experience a significant amount of anxiety regarding how best to care for and nurture their newborn following discharge from the NICU.”

“Families have to shift their mindset from helping their infant survive to considering the myriad of supports and services that may be needed to help their infant thrive,” Allen said. “The vision of the SOAR Program is to help make this transition easier by providing infants and families with the support they need to help these precious little ones grow, learn, and develop to maximize their ultimate potential.”

The SOAR program is geared toward meeting the needs of families with high-risk-infants throughout the child’s first three years of life. The SOAR team consists of multiple medical and non-medical providers, including three pediatricians who have particular expertise in caring for high-risk infants following their discharge from the NICU. These pediatricians work closely with Allen, who is a developmental behavioral pediatrician, to track each infant’s growth and development to ensure that any developmental concerns are detected and addressed as early as possible. Should developmental concerns arise, our team of SOAR Occupational, Physical and Speech therapists are ready and able to provide any therapy services that are needed.

The SOAR team also includes several other providers that families might have met during their infant’s NICU stay, including a pulmonologist, clinical nutritionist, lactation specialist, and social worker, all of whom allow for continuity of care. There also is a psychologist on the team, who provides behavioral therapy and parent training to help address any social-emotional or behavioral concerns that an infant may develop.

In addition, parental stress/anxiety and depression screens are routinely given at follow up visits to make sure any necessary parental supports are in place and to facilitate access to community resources that may be necessary to meet any needs that are identified.

Kristine said Reid sees various members of the team about once a month. All of the visits are scheduled on one day for convenience and collaboration. So far, Kristine said, Reid is doing great. He’s gaining weight, hitting all of his developmental milestones and is happy.

“I don’t know how we would do it without our SOAR team,” she said. “They help so much and make us feel like we are a part of the medical team. We are extremely thankful for their support.”

Allen said she is glad to hear comments like Hartin’s, and that from her perspective, the SOAR program is doing a good job of providing a seamless transition of care for their enrolled high-risk infants, and their families, following discharge from the NICU. In addition, she said it is providing families with a more robust way of tracking their child’s development and that this facilitates early detection and intervention to help address, and hopefully overcome, these developmental concerns.

“Families in the NICU have gone through so much,” Allen said. “Our desire is to support you and your little one in any way we can. Our SOAR Team is ready to help your little one rise to new heights, spread his/her little wings, and SOAR!”

On July 9 the Cancer Center clinic surprised outpatients with a visit from Elsa, one of Texas Children’s three therapy dogs.

With the dogs constantly making their rounds throughout the hospital visiting inpatients, at times outpatients miss the opportunity to see their furry friends.

“Elsa and I spent a lot of time with the hematology oncology inpatient population during our first year and a half,” said Animal Assisted Therapy Coordinator, Sarah Herbek. “Our patients began to look forward to coming to the hospital and seeing Elsa during their admission. Their journey doesn’t end when they are discharged, and neither should their relationship with Elsa.”

As Elsa’s handler it was Herbek’s goal, along with other members of the Child Life department to provide continuity of care by following these patients throughout their entire treatment journey, inpatient and outpatient.

“I think Elsa and our Pawsitive Play Program have been especially impactful with our cancer patients because of the long duration of their treatment,” Herbek said. “Our patients come to Texas Children’s on a regular basis for months and sometimes years. Elsa’s presence is something they are able to look forward to during those times. They know that Elsa will be there when they need a shoulder to cry on, a paw to hold, or a furry friend to snuggle with.”

The hospital launched its Pawsitive Play Program in 2016 and it has become highly appreciated throughout the organization in just that small amount of time. The goal of the committee that introduced this program was to use animal-assisted therapy to enhance the emotional well-being of pediatric patients by reducing their anxiety, perception of pain and fear of hospitalization.

“As Executive Vice-Chair, I represented the Department of Pediatrics on Texas Children’s Hospital Facility Dog Steering Committee,” said Dr. Susan Blaney, director of Texas Children’s Cancer and Hematology Centers. “This committee is actively exploring multiple opportunities for children and their families to benefit from therapy dogs.”

Cancer treatment can be very painful physically and mentally. Adding a trained therapy dog to this stressful environment can increase a patient’s energy level and decrease any discomfort or anxiety.

Also, a lot of the patients in the clinic have severe conditions and are not able to experience situations that other children their age would. For one patient the visit from Elsa fulfilled this void with it being her first time interacting with a dog.

“It is very important for patients receiving treatment in the Cancer Center to be able to have time with Elsa because it is a meaningful interaction during a difficult time,” said Child Life Specialist, Katy O’Dell. “These interactions can boost the patients overall mood by allowing them to engage in activities with Elsa that are fun and interactive, which most importantly brings a smile to their face.”

Now that the Pawsitive Play program has grown and added both Bailey, the Legacy Tower therapy dog, and Pinto in Acute care, it has become even more impactful.

“The positive psychosocial impact of the therapy dogs is better than that of any medicine that we could prescribe,” said Blaney. “We are so thankful that Texas Children’s supports the therapy dog program and that we have world class child life specialists who work with this program to handle the dogs as well as to provide support to the children and their families.”

Texas Children’s Hospital’s Emergency Management and Bone Marrow Transplant teams recently conducted their first large scale functional radiation injury treatment exercise. As a member of the Radiation Injury Treatment Network (RITN), our organization conducts annual exercises as part of our emergency preparedness activities.

“This was new for us. We’ve never done an exercise on this scale,” said manager of the Emergency Management department, Aaron Freedkin. “Normally, we just do our own internal tabletop exercise, last year was a regional tabletop, and this year we wanted to make ours a large and more complex functional exercise.”

RITN is a system of hospitals affiliated with the National Marrow Donor Program providing comprehensive evaluation and treatment for victims of radiation exposure or other bone marrow toxic injuries.

This year’s exercise was a simulation of the arrival of 30 patients to the Medical Center Campus, six patients to Woodlands, and six patients to West Campus, that are victims of a terrorist event. The scenario starts two weeks after a nuclear explosion in Los Angeles and the victims are all suffering from acute radiation syndrome. The patients that are coming to Texas Children’s are in need of a bone marrow transplant or specialized supportive medical care.

To prevent overcrowding the Emergency Center, a Patient Reception Center (PRC) for the exercise was created in the first floor auditorium of Feigin Tower. Several supportive care staff were positioned strategically for the arrival of victims. Conference rooms at West and Woodlands Campuses were also set-up to simulate a reception center.

“You can kind of call it a stress test for how our hospital’s going to deal with an influx of real patients. It’s really a medical surge exercise for us,” Freedkin said. “We’ve done it with mass casualties where we’ve simulated a bus crash or a terrorist event for the ER, but we’ve never done something quite on this scale and in this vein.”

Prior to the exercise, the team had a quick introductory briefing to make sure everyone knew their roles. The simulation then began with patients arriving, some even on gurneys as they would possibly be during a real event. Upon arriving, patients and their family members or guardians received a preliminary health check for safety precautions before visiting with Patient Experience to offer comfort and any necessary information needed along with Language Services to assist with any language barriers.

“They are scanned for radiation contamination so that the Communications Team can make sure all of our current staff and patients who are in the hospital know we are ensuring there’s no risk from these patients arriving,” Freedkin said. There’s a lack of understanding among the general public about the difference between contamination and exposure to radiation. So they definitely would go and get checked first.”

The initial step of the process was registration before the patient and their family members were escorted through triage. They then met with a physician for a simulated exam, followed by a simulated blood drawing session. Texas Children’s Patient and Family Services departments such as Social Work, Chaplaincy, and Child Life were also available to offer patients whatever kind of support they needed. This is very important because in a real event they would have been taken from a familiar environment where the incident happened, to an unknown field hospital, and possibly even another level of care before arriving at Texas Children’s.

“They might not know where all their family is. They might not know who survived. There’s some big emotional issues there,” Freedkin said. “They might not have any belongings either. We’re going to bring them here and make sure that we’re meeting all of their physical and emotional needs.”

The simulation ended after the last patient went through the entire process successfully. Essentially, they would have gotten all of the stations checked off on their card, then transferred to a patient care room if necessary.

“The exercise was very successful in testing our PRC,” Freedkin added. The PRC was a new concept that we developed to allow the hospital to process a surge of patients into the hospital without putting stress on the Emergency Center.”

For next year the teams hope to do a more complex full scale exercise where they would be able to move a larger number of patients to and from Ellington Field, a local military airport, and create a greater simulation to possibly include other outside emergency services such as the fire department, state entities, and federal agencies.

“I look forward to seeing how the lessons learned from this exercise improve the process for the next time that we simulate it,” Freedkin said. “It’s something we hope never happens, but it’s something that we need to be prepared for and be able to support if something really does happen. In the big picture, it helps us with overall preparedness that we can use the lessons here to manage any large scale surge event.”

July 10, 2018

Texas Children’s Transplant Services has hit another milestone – the completion of 200 lung transplants and 400 heart transplants, making the program one of the highest volume pediatric heart and lung transplant centers in the nation.

The milestone continues to solidify Texas Children’s position as one of the most active pediatric transplant programs in the country, per the U.S. Department of Health & Human Services Organ Procurement and Transplantation Network.

“This type of volume has only been accomplished in a handful of pediatric programs across the United States,” Surgeon-in-Chief Dr. Larry Hollier said. “We are proud to add Texas Children’s Hospital to this distinguished list.”

Transplantation began at Texas Children’s in 1984 with a pediatric heart transplant. Since that time, liver, kidney and lung have been added and countless lives have been saved. Just last year, Texas Children’s Transplant teams performed 112 solid organ transplants, the most in the history of Texas Children’s Transplant Services.

“I’m proud to be working with a team so dedicated to providing the best possible outcomes for our patients,” said Dr. John Goss, medical director of Transplant Services. “This milestone demonstrates that Texas Children’s continues to earn its reputation as one of the best pediatric transplant programs in the country, and is a testament to the skill and commitment of our multidisciplinary team.”

Texas Children’s Transplant Services draws on numerous medical, surgical and support specialties, including transplant coordinators who play an essential role in connecting recipients with prospective donors, who ultimately made the transplant process possible.

“Without our donor families, our patients would not be given the gift that provides them a second chance at life,” said Dr. Jeff Heinle, surgical director of the Heart and Lung Transplant Program. “We can never forget to acknowledge the selfless decisions they make during the most difficult times of their lives.”

The recipients of Texas Children’s 200th lung transplant and 400th heart transplant are both doing well. Read more about their stories below as well as information about Texas Children’s Transplant Program and how to become an organ donor.

Brandon Cliff
Twelve-year-old Brandon Cliff has Cystic Fibrosis, a progressive genetic disease that causes lung infections, makes breathing difficult, and affects the pancreas, liver and other organs. The disease eventually leads to lung failure. Due to such complications, Brandon had been under consideration for a transplant for more than a year before receiving a double lung transplant on June 21. Performed by Dr. Iki Adachi, the transplant went well. Brandon was discharged from the hospital on July 3 and is ready to play with his brothers, cousins and friends as well as golf and basketball. Watch Fox 26’s news story about Brandon here.

Anacecilia Ortiz
Anacecilia Ortiz turned 14 at the beginning of July, just days after receiving her second heart transplant. The teenager got her first transplant at a children’s hospital in Colorado when she was 7 months old. Doctors there told her a transplant was necessary after finding a tumor inside her heart that was growing and could not be operated on. Over the years, Anacecilia’s body began to reject her new heart, causing it to develop scar tissue and not beat as hard as it should. A few serious dizzy spells earlier this year led Anacecilia’s physician in Brownsville to send her to Texas Children’s, where she was placed on the transplant list after trying medication. A month and a half later in mid-June, Anaceclila received her second heart transplant. Since then, she’s been doing extremely well and is currently recovering at her Pearland home.