October 15, 2018

On October 6, nearly 500 Texas Children’s patients, parents and employees took a walk on the wild side at the Houston Zoo for the first Fall Family Festival, sponsored by Texas Children’s Transplant Services.

“It’s special for these patients to have an event like this,” said Medical Director of Transplant Services Dr. John Goss. “It’s exciting for these children to be able to play and interact with each other, and it’s truly a testament to what our multidisciplinary team can do.”

It was a morning full of fun and festivities, as 106 current and former Texas Children’s transplant patients and their families gathered for face painting, snow cones, music from a live DJ and a lunch buffet at the Masihara Pavilion. Rather than holding a special ceremony, the festival simply provided kids with an opportunity to come together and have fun with other kids who’ve been through similar ordeals, and to remind them that they’re not alone.

“Being together in a fun, social setting is so important for transplant recipients,” said Riki Graves, whose daughter, Juliana, had a life-saving heart transplant at Texas Children’s in 2014 – at just 17 days old. “This event was a wonderful way to let kids get know to know other kids who’ve been through transplant, or are waiting, so they can feel like normal kids and not like a sick child who is different or needs special care.”

Graves says the event was also a special way to thank transplants recipients’ biggest supporters – their siblings – who usually feel the hospital stays and extra care given to the recipients more deeply than the rest of the family.

Transplantation began at Texas Children’s in 1984, when Dr. Denton Cooley performed a pediatric heart transplant. Since that time, Transplant Services at Texas Children’s Hospital has grown into one of the largest pediatric programs in the nation, performing 112 solid organ transplants in 2017, making it the most active pediatric transplant program in the nation. Our depth of skill and service, both within the program and throughout the hospital, gives us the ability to care for newborns to young adults in need of heart, kidney, liver and lung transplants.

Transplant Services is proud of its long list of firsts, including the hospital’s first – and 1 of only 3 in the nation – triple transplant of heart, lungs and liver in one procedure. We also performed the first pediatric lung-kidney transplant in the United States. Since 2004, 25 patients have been transplanted with double organs, including liver-kidney, liver-lung, heart-lung, heart-kidney and lung-kidney.

Learn more about Transplant Services at Texas Children’s.

Diagnosed with a rare cancer called Langerhans cell histiocytosis, Shauntelle Tynan traveled 5,000 miles from her home in Ireland for a cure.

Earlier this month, Shauntelle rang the end-of-treatment bell at Texas Children’s Cancer and Hematology Centers!

During her bell ringing ceremony, she surprised Dr. Kenneth McClain, director of the Histiocytosis Program, with a donation toward histiocytosis research. A very special and emotional moment surrounded by family and friends. Join us in congratulating, Shauntelle!

To learn more about her journey, read Shauntelle’s blog at Texas Children’s Blog.

October 10, 2018

The medical community lost a legend on October 9, 2018, with the death of Dr. William T. Shearer, founder and former chief of the Allergy and Immunology Service at Texas Children’s Hospital and professor of Pediatrics and Immunology at Baylor College of Medicine. Dr. Shearer was 81.

Shearer was an internationally-respected leader in the field of allergy and immunology. One of the things he is best known for was providing innovative care to Texas Children’s most famous patient – David “The Bubble Boy” Vetter – which led to revolutionary immunologic discoveries.

Throughout his lengthy career, Shearer pursued his passions in basic and clinical research in primary and secondary immunodeficiency with continuous funding from the National Institutes of Health during his 40-year tenure at Texas Children’s. He authored over 500 journal articles and textbook chapters, and was the editor-in-chief of the world’s premier textbook of clinical immunology for more than 20 years.

Shearer served in leadership positions with virtually every major professional organization concerned with patient care, training and research in pediatric immunology and HIV/AIDS. He was active in clinical research for children with HIV infection and participated in numerous pioneering studies in the prevention and treatment of the disease and its complications. Shearer was passionate about this work and continuously pursued research in this area until his passing.

For many who knew him, Shearer was described by his colleagues as an incredibly compassionate mentor. Throughout his career, he mentored 117 trainees as the Program Director of the Allergy and Immunology Fellowship Training Program at Texas Children’s and Baylor College of Medicine.

“It was my good fortune to work side-by-side with Dr. Shearer for many years,” said Texas Children’s Physician-in-Chief Dr. Mark W. Kline. “No one worked harder or was more dedicated to his patients and trainees than Bill. I learned an enormous amount from him during the formative stages of my career development. He was a mentor and friend for nearly 30 years, and I will miss him tremendously.”

Shearer received many prestigious awards for his work as a clinician, researcher and mentor including a Research Scholar Award from the Cystic Fibrosis Foundation, a Faculty Research Award from the American Cancer Society, and the Arnold J. Rudolph – Baylor Pediatric Award for Lifetime Excellence in Teaching. In addition to these accolades, Shearer received the 2017 Clinical Immunology Society Distinguished Service Award.

“It is truly an honor to be able to witness the incredible passion and productivity of this international leader, eminent immunologist, superlative teacher and incredibly compassionate mentor,” said Dr. Carla Davis, chief of Immunology, Allergy and Rheumatology Service at Texas Children’s. “We will all miss him dearly.”

Because of Shearer’s care of David Vetter, he and the late Dr. Ralph D. Feigin wanted to create a lasting tribute in David’s memory, the David Vetter Memorial Fund. The David’s Dream Run was founded by the David Elementary School and the Parent Teacher Organization to support this Memorial Fund.

Click here to make a donation to the David Vetter Memorial Fund in memory of Dr. Shearer. Donations made in memory of Dr. Shearer will benefit the Memorial Fund which is dedicated to research, diagnosis and treatment of immune deficiencies.

Wally Crow, August 2018 Employee

Your name, title and department. How long have you worked here?
Wally Crow, senior video producer in the Marketing and Public Relations Department. I have been at Texas Children’s Hospital for six years.

Tell us how you found out you won a super star award.
It was a complete surprise! My co-workers organized a pretend meeting to get me to the conference room. I thought we were having a Legacy Tower meeting to discuss our communication plans. But as I walked into the room, the entire marketing team erupted in cheers and congratulated me on the Super Star recognition. I was blown away! I thank my colleagues for making this day extra special for me.

What does it mean to be recognized for the hard work you do? How has the organization helped you achieve your personal and professional goals?
It means a lot to me to be recognized for my hard work. Coming in to this line of work was a little different than my last career where I spent more than 20 years in television news. Every day, I combine my experience and my passion for storytelling at Texas Children’s, so to be recognized for this, is special.

Texas Children’s not only has given me the freedom to use my talent and passion to achieve my professional goals, but it has helped me to reach my personal goals as well. In 2015, I challenged myself to drink 64 ounces of water per day as part of Texas Children’s 21-day Water Challenge. Now, it’s the only thing I drink these days. Also, I have taken advantage of Texas Children’s partnership with Lifetime Fitness, where I exercise six days a week. I find working out both relaxing and a great way to de-stress.

What do you think makes someone at Texas Children’s a super star?
I think a super star is someone who comes to work with passion and a positive attitude every day, and is a great team player – always willing to inspire and encourage others to always do their best.

What is your motivation for going above and beyond every day at work?
I love what I do every day. I look at every day as a new challenge, and people who know me, know how much I love a challenge. There are so many wonderful stories to share about Texas Children’s especially those stories about our patients and families, and the positive impact we’re making in their lives. Being able to share these inspiring stories is what motivates me to go above and beyond every day at work.

What is the best thing about working at Texas Children’s?
The best thing about working at Texas Children’s are the people. Great attitudes and smiles. I also enjoy helping our patients and their families get to where they need to be across our hospital campuses.

What does it mean to you that everyone at Texas Children’s is considered a leader? What is your leadership definition?
I consider all of our employees’ super stars. No matter what our title is at the hospital, we’re here to serve our patients and their families. My definition of leadership is simple – A leader is someone who strives for the best every day. It’s about teamwork and helping others out to get the job done.

Anything else you want to share?
I want to say thank you to my entire team that I get to work with every day, and a special thank you to Rosie Moore for nominating me for this award. As I always say, “Keep the Passion.”

October 8, 2018

Before Dr. Thierry A.G.M. Huisman accepted his new position as chief of radiology, he knew that Texas Children’s Hospital was the place to be. So, when he and his family made the 1,445-mile journey from Baltimore to Houston a month ago, the move was a no brainer.

“From the moment I walked into Texas Children’s, one of the many things that attracted me to this hospital was the people and their enthusiasm and dedication to patient care,” Huisman said. “I am thrilled to join this wonderful team at Texas Children’s and love the opportunity to bring the best of radiology to the bedside of each patient to guide the care, and consequently optimize the health, of all the patients we take care of.”

Before joining Texas Children’s radiology team, Huisman obtained his medical degree from Erasmus University Rotterdam in The Netherlands. He completed his radiology and pediatric residencies, and his pediatric radiology and neuroradiology fellowships, at the University Hospital Zurich in Switzerland where he also served as chairman and radiologist-in-chief of the Children’s Hospital Zurich before he was recruited to Johns Hopkins in Baltimore. Most recently, Huisman served as chairman of the Department of Imaging and Imaging Science at Johns Hopkins Bayview Medical Center in Baltimore and chief of pediatric radiology.

As Texas Children’s new radiologist-in-chief, Huisman will lead one of the nation’s most clinically and academically active radiology programs, bringing together world-class multidisciplinary expertise with leading-edge technology in a family-centered environment to provide comprehensive, accurate and safe imaging.

“Besides leveraging the most advanced, objective imaging techniques at Texas Children’s, it is my overall vision for our radiology team to lead the way in identifying new approaches to diagnose disease as well as advance the discovery of new treatment options that will lead to even better outcomes for our patients,” Huisman said.

As a clinician-investigator, Huisman’s primary field of expertise and research focuses on advanced, quantitative, precision imaging in the field of Pediatric Neuroradiology. He has given more than 380 invited lectures, published 320 articles, 30 reviews, 60 book chapters, five text books, serves on multiple scientific committees of the various radiological societies and has organized multiple national and international meetings in Europe and the USA. He has been the founding member of the Swiss Symposium in Pediatric Neuroradiology.

“I am thrilled Dr. Huisman, who is a talented radiologist and collaborative leader with a history of bringing radiology expertise to the bedside, has joined our one amazing team at Texas Children’s,” said Texas Children’s President and CEO Mark Wallace. “In addition to his focus on patient care, Dr. Huisman’s significant accomplishments as a clinician-investigator, as well as his passion for education and mentorship, will continue to enhance our radiology research and education efforts.”

A world-class, multidisciplinary team at Texas Children’s is making huge strides in the care of children with extremely complex tumors.

The Head and Neck Tumor Program, begun in February 2016 as collaboration with partner institutions within the Texas Medical Center, has performed more than 20 major ablation free-flap multidisciplinary cases – a staggering number, considering the rarity and complexity of the tumors, which can be malignant or benign and can affect any combination of the sinuses, skull, jaw, mouth, neck and face. The ability to handle that volume of complex cases, combined with tremendous outcomes in the first two years, puts Texas Children’s Head and Neck Tumor Program among the best such programs in the country.

“Our institutional expertise is in taking care of these kinds of critically ill children, and Texas Children’s does it better than anyone,” said Dr. Daniel Chelius, attending surgeon in the Division of Otolaryngology and co-head of the program. “We’ve built a collaborative, coordinated program on that foundation of expertise in many different areas to provide the best care possible for the sickest children, while also reviewing and analyzing the care from every angle to see what went well and what processes could improve.”

Treatment of children with head and neck tumors around the country has historically been ad hoc, due to the varying functional issues or oncologic needs present from patient to patient and the extreme rarity of the tumors in any given city. Compound these complex physiological issues with the fact that most children these tumors have been treated in adult hospitals and the result has been a largely disjointed approach to care.

Texas Children’s Head and Neck Tumor Program, spearheaded by Chelius and Dr. Edward Buchanan, chief of Plastic Surgery, has developed a coordinated process around a multidisciplinary team approach that builds crucial experience in the treatment of these rare tumors and provides consistent, personalized care for patients – like 15-year-old Kami Wooten.

Last year, Kami began to notice swelling in her gums. Just months later, a benign tumor had covered half her face and threatened her vision. The team at Texas Children’s developed a specialized care plan that included removing the mass and reconstructing a portion of her face including the roof of her mouth and her orbit (eye socket). Additional procedures will be necessary in the future, but Kami and her family are grateful for the care Texas Children’s gave them.

Learn the rest of Kami’s story here.

The collaborative program comprises more than 10 Texas Children’s specialties and subspecialties, including Otolaryngology, Plastic Surgery, Neurosurgery, Oncology, Interventional Radiology and Anesthesiology, as well as a dedicated operating room team – led by Audra Rushing and Kelly Exezidis – that has been instrumental in building robust perioperative protocols. The additions of pediatric head and neck surgeon Dr. Amy Dimachkieh and microvascular reconstructive surgeons Dr. W. Chris Pederson and Dr. Marco Maricevich have increased the program’s abilities and improved the quality of its recommendations.

“It takes a lot of thought and planning to remove these complex tumors completely, while sparing as many nerves and other important structures as possible, and then to reconstruct those structures to provide both a good functional and cosmetic outcome,” Chelius said. “We tell our patients that the process might not be fast because they need the right surgery the first time. That requires recommendations from a team of experts, not just one surgeon. And that means carefully coordinating to make sure everything is as perfect as possible.”

The care required to treat these tumors, particularly if the patient is also undergoing cancer treatment, can also take a massive emotional and psychological toll. The Head and Neck Tumor Program provides additional care support through the department of Clinical Psychology and Child Life Services.

The team also uses technology to enhance the patient experience, from diagnosis to recovery. The program uses 3-D modeling to reconstruct children’s anatomy to help predict the extent of resection and to develop the surgical plan. The team also developed a data-driven protocol for pediatric tracheostomy removal, in close collaboration with Speech and Language Pathology, which uses a pressure monitoring device to signal when the trach is loose enough in the airway to be removed without adverse effects.

As a result of this innovative approach to care, 100 percent of patients treated have left the hospital breathing, eating and swallowing on their own. And the average stay in the hospital: just 14 days.

The program has been steadily building a referral base, drawing patients from across the region and from as far away as Mexico and the Middle East. In the near term, the team will continue to solidify the program, publish data and findings, and work to increase Texas Children’s reputation as the leading referral center for these complex cases. Long-term goals include building a basic science research infrastructure around understanding the underlying causes of these tumors, as well as collaborating with Texas Children’s Cancer Center and other research partners.

“We know that families are coming to us shocked and scared,” Chelius said. “We want them to know that we’re building our experience, we’ve walked families through this before, and we’re going to get them through this with the absolute best care available.”

Learn more about Texas Children’s Head and Neck Tumor Program.

Time is something every grieving parent wishes they had more of when saying goodbye to their child. Katie and Phillip Hurlbut would have loved to have had more time with their daughter Ella Grace, who passed away seven weeks after birth due to complications from an infection in September 2015.

“We felt rushed after she passed away,” said Katie, who is a nurse practitioner at Texas Children’s Pediatrics Humble Fall Creek. “We had very little time for our family to come and say goodbye to her.”

To extend the narrow window of time families have with a lost loved one, the Hurlbuts recently donated two Caring Cradles in Ella’s memory – one to the Women’s Specialty Unit at the Pavilion for Women and the other to Neonatal Intensive Care Unit at Texas Children’s Hospital The Woodlands.

The cradles use a cooling blanket to cool the baby’s body, which prevents any distressing physical changes and lengthens the preservation of the child by 24 to 48 hours. The cradles can be positioned in a private setting so that families not only have more time with their baby but can say goodbye in a private, dignified way.

“After we lost Ella, feeling her body change was one of the most upsetting things for me. Those changes made me realize how quickly she was slipping away from me,” Katie said. “As a grieving mother, I struggled knowing I only had a short amount of time to create memories with her. It’s our prayer for these Caring Cradles to give the gift of time to grieving families.”

Jenni Fair, patient care manager in the NICU at Texas Children’s Hospital Medical Center campus, said the cradles are especially helpful to mothers who might have been ill during delivery and unable to spend time with their child immediately after birth.

“Some mothers are literally physically unable to mourn the death of their child for a day or so until they are doing better themselves,” Fair said. “The cradles are very helpful in these situations.”

The Hurlbut’s donation of the Caring Cradles came a little more than a year after the grand opening of the Butterfly Bereavement Room at the Pavilion for Women. Devoid of medical equipment, the Butterfly Room is a nicely decorated nursery where families can separate themselves from the hospital setting and mourn privately. When they leave the room, families can take a purple bag filled with things such as a bereavement gown for their baby, a blanket and a book.

The Butterfly Bereavement Room also was an initiative spearheaded by the Hurlbuts.

“Our goal is to bring peace and comfort to other families going through the same painful experience we did – losing a baby,” Katie said. “We’re very thankful for the opportunity to turn something so tragic into something good. Ella’s life will continue to impact grieving families in a positive way for many years to come.”