March 31, 2015

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One month after their successful separation surgery, Knatalye and Adeline Mata are progressing well as two separate little girls.

Knatalye can breathe on her own and was recently transferred to the Progressive Care Unit where she will resume her recovery. Her sister, Adeline, is still on a ventilator in the Pediatric Intensive Care Unit (PICU), but her doctors remain optimistic that she will breathe on her own just like her twin.

“Knatalye’s progress has been a tiny bit faster than Adeline, but it was just because of where they started out,” said Dr. Darrell Cass, co-director of Texas Children’s Fetal Center. “We’re still in the acute recovery phase of care where we’re working on breathing, sedation and pain management and working on their intestinal function.

Prior to the girls’ separation surgery, Knatalye and Adeline spent the first 10 months of their life in the Neonatal Intensive Care Unit (NICU) where they received daily care from their team of NICU nurses. To adequately prepare them for their separation surgery, the NICU nurses helped engineer a custom bed space for the girls in the NICU and collaborated with Hanger Clinic, to devise a swing that would safely keep the twins upright for a large portion of each day after their tissue expanders were in place.

“We emotionally, physically and intellectually invested a lot of care in the girls,” said Alex Luton, a clinical nurse specialist at Texas Children’s Newborn Center. “I know it was a difficult but necessary transition for them to go to the PICU.”

To ensure a smooth transition of care for the girls and their family, the NICU nurses partnered with the PICU team before and after the separation surgery.

“We sent a couple of nurses per shift for the first few days post operatively to kind of be there as a familiar face for the family as they began to build their relationships with nurses in the PICU,” Luton said.

Each of the babies had a PICU nurse and a NICU nurse for the first few days after separation surgery.

“As they stabilized and their condition improved, one nurse was assigned for each baby,” said Shannon Holland, assistant director of nursing in the PICU. “Now, they have one nurse for the two babies together.”

In addition to receiving around-the-clock care from the PICU nurses, Knatalye and Adeline receive therapy every day – physical therapy in the morning and occupational therapy in the afternoon to optimize their muscle development and motor coordination.

“We are practicing a lot of reaching and grabbing using both hands, bringing their hands together, banging toys together, visual tracking, “said Texas Children’s occupational therapist Chelsea Pierce.

Texas Children’s physical therapist Frank McCormick assists the girls with head control, trunk control, stretching, range of motion and working with their feet.

“The sessions are dictated by kind of what they can tolerate,” McCormick said. “Usually 30 minutes is a window, but if they can go further and are still awake and participative, then it can go upwards of 45 minutes to an hour.”

While Knatalye and Adeline’s recovery will take some time, their doctors are optimistic about their future.

“We would expect their gait, their walking stride, to be somewhat altered initially,” Cass said. “We’ll have to monitor them. With some therapy, we’re optimistic that they will be able to walk and live a normal life.”

Texas Children’s Surgeon-in-Chief Charles D. Fraser also shares that same spirit of optimism.

“This is another example of why a case like this should be done at Texas Children’s because we have the team and expertise to handle complex medical conditions,” Fraser said. “I am very, very confident that we will continue to move them on a positive recovery trajectory.”

Connect videos of the Mata twins:

Voices of Nursing: NICU nurses’ reflection on caring for the Mata twins

Hope, faith and expertise: Surgical team leads historical Mata conjoined twins surgery

3D Model of Mata twins helps surgeons prepare for girls’ separation

Positioning team designs, builds swing to help conjoined twins sit up

Mata conjoined twins take first step toward separation with tissue expansion

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4115stbaldricksbefore640Eighteen years ago, Adam Henderson lost his hair as a result of treatments while battling acute lymphocytic leukemia at Texas Children’s Hospital. As of a few days ago, Henderson is once again bald after participating in the St. Baldrick’s event in The Woodlands with his former pediatric oncologist, Dr. Timothy Porea. Both Porea, clinical director of Texas Children’s Cancer and Hematology Centers, and Henderson shaved their heads to raise funds and awareness for pediatric cancer research along with about 60 other participants.

“It is the first time Adam has been bald since he had been treated for his cancer 18 years ago,” said Porea who was a fellow at Texas Children’s Hospital when Henderson was undergoing treatment. “He’s just a great role model for our current patients and their families to show how far you can go when you’re through with these difficult treatments.”

“There were a lot of emotions about being bald again,” Henderson said. “This time, I’m doing it by choice and it’s a joyous occasion because I was able to promote a great cause. When I was sick, I was beat down, it was very difficult when I lost all of my hair.”

Porea has participated in the fundraising and head shaving for the last ten years. He had previously taken part in the events in Virginia. This year, after a move back to Houston, he was excited to call his former patient to join him. Porea and Henderson have kept in touch over the years and are even counselors together at Camp Periwinkle.

4115stbaldricksduring640“It’s more than just a profession to Tim,” Henderson said of his former physician. “It’s true to his character and speaks to where his heart is. He’s an inspiration.”

St. Baldrick’s annual challenge to “Brave the Shave” brings together survivors, patient families, physicians and supporters from across the community to raise funds for childhood cancer research. This year, the nationwide shaving events have raised more than $22 million so far. The foundation was started as a response to the lack in funding for childhood cancer research. According to the organization’s website, while 175,000 children are diagnosed with cancer each year, all types of childhood cancers combined receive only 4 percent of the U.S. federal funding for research. The funds raised through St. Baldrick’s have helped fund 820 grants, at 329 institutions, in 22 countries. Several have been given to researchers at Texas Children’s Cancer and Hematology Centers. For Porea, who sees these patients every day, this research is vital to the discovery of better treatments and the possibility for a cure.

“Seeing Adam next to me for this event means we have succeeded, he’s here!” Porea said. “He’s able to do all of these things despite everything he went through as a child. It helps reinforce to me why we all do what we do here every day.”

For Henderson, his new bald look is a conversation starter. Most importantly, it brings attention to a disease he’s all too familiar with.

“At first, the conversation about being bald starts off as kind of a joke with people commenting on my ‘nice haircut’,” Henderson said. “But when I share my story and specifically talk about St. Baldrick’s, it’s impactful. People take it very seriously and there have been a lot of people that have walked away from these conversations with more knowledge and awareness.”

Asked how long he plans to continue shaving his head for childhood cancer research, Porea didn’t hesitate to answer.

“As long as I have hair.”

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April 2 is World Autism Awareness Day when the international community will “Light It Up Blue” to bring recognition to autism as a rising global health concern. Texas Children’s encourages everyone to wear blue that day or post something blue to one of their personal social media pages to show their support for autism awareness.

Autism spectrum disorder is the fastest-growing developmental disability in the United States, affecting 1 out of every 68 children. It occurs more often among boys than girls. Children with autism often experience significant social, communication and behavioral challenges.

For more than a decade, Natanya Dugall searched for a diagnosis for her son that would explain his vision, speech and movement impairments. She knew something was wrong with Grayson from the moment he was born, but initial genetic testing turned up nothing.

When Grayson turned 13, Dugall received some unexpected news. A laboratory had identified chromosomal deletions on a specific gene in Grayson’s DNA which had been collected years earlier. After the initial find, Grayson participated in a study at the Autism Center at Texas Children’s that examined the effects of people who grew up with either chromosomal deletions or copies on this gene.

When the Dugall family made the 1,120-mile trek from their home in Milwaukee, Wisconsin to Houston in 2011, their quest for answers to Grayson’s puzzling condition was confirmed – he had autism.

“I cannot begin to express my gratitude to the research team from Baylor College of Medicine and Texas Children’s Hospital for funding all of the testing and travel expenses,” Dugall said. “Grayson understands the probability that he can pass this to his children – knowledge that we struggle with but are so grateful to finally know.”

The Autism Center’s multidisciplinary team of specialists from developmental pediatrics, psychology, psychiatry, neurology and social work provide diagnostic evaluations and ongoing clinical care to 2,000 patients with autism each year. Researchers at the Autism Center participate in a wide range of research studies focused on autism spectrum disorders, collaborating with scientists from other renowned centers across the nation.

In conjunction with the groundbreaking work emerging from the The Autism Center, Dr. Ruth Ann Luna at Texas Children’s Microbiome Center focuses much of her research on the link between disturbances in the gut microbiome and gastrointestinal (GI) symptoms in children with autism. One of her biggest motivators is her 6-year-old son, Kellen, who has autism.

With the support of a $1.4 million, three-year-grant from Autism Speaks, Luna and her Baylor and Texas Children’s colleagues are embarking on a study to determine if a biological connection exists between autism and GI disorders.

“I was in awe when I found out we were awarded this funding to advance autism research,” Luna said. “The data gleaned from our research will benefit my son and other families who have children with autism, especially those children with limited verbal abilities.” Click here to read more about Luna’s autism study.

For more information about “Light It Up Blue, click here and to learn more aobut the Autism Center at Texas Children’s click here.

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The Department of Pediatrics has been selected to edit the 23rd edition of the classic textbook Rudolph’s Pediatrics. First written in 1897 as Disease of Infancy and Childhood by L. Emmett Holt, M.D., the book is today one of two principal textbooks of pediatrics used around the world.

“This is a major milestone in the transition of editorial responsibilities for an iconic 119-year-old pediatric text- the first such editorial transition in more than 30 years, Said Physician-in-Chief Dr. Mark W. Kline. “It is also a potentially transformative event in the history of Texas Children’s Hospital and Baylor Pediatrics.”

The most recent, 22nd edition published in 2011 by McGraw-Hill Professional includes 2,488 pages and a companion DVD featuring more than 1,700 figures, 1,100 tables and 30,000 references.

Abraham M. Rudolph, M.D., now professor of pediatrics emeritus at the University of California San Francisco, assumed the editorial reins in 1977 with the 16th edition of the book, then known simply as Pediatrics. In 1991, with the 19th edition, it was renamed Rudolph’s Pediatrics in his honor. Editor-in-chief for the 22nd edition was Abraham Rudolph’s son, Colin, Rudolph, M.D., Ph. D., vice chair of Clinical Affairs of the Department of Pediatrics at the Medical College of Wisconsin.

“It’s a huge honor to be selected for editorial responsibility for such a high profile textbook,” said Physician-in-Chief Dr. Mark W. Kline. “It takes a big, diverse department like this one to pull this off.”

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Margaret Young from the Bone Marrow Transplant Unit is the latest Texas Children’s Super Star leader. “I believe a Texas Children’s Super Star goes above and beyond daily – not just when there’s a need or a call to assist,” Young said. “A Super Star leader is impactful, has influence and can make a difference.”

Read more of Young’s interview:

Q&A: Margaret Young, October – December 2014 Leader

Your name, title and department. How long have you worked here?
Margaret Young, MHA, RN, Bone Marrow Transplant. I have worked at Texas Children’s for 15 years and in Bone Marrow Transplant for three years.

What month are you Super Star for?
Super Star Leader for October-December 2014

Tell us how you found out you won a super star award.
I was going about my day as usual engrained in completing my various responsibilities, and I was notified by my assistant clinical director we had an impromptu budget meeting with our director. I was thrilled….!!! I gathered all my notes and reports and proceeded to the conference room. As I walked in the conference all the staff members, my fellow peers, ACD, and AVP were already in the room clapping and smiling. Indeed I must say I was surprised and thrilled and then asked “What’s this for?” I then looked at the banner which stated Super Star Leader. The decorations and food were great!

What does it mean to be recognized for the hard work you do?
The Super Star recognition means to me that someone has really recognized how hard I truly work each day. I treat every day like a new day and know that tomorrow is not promised. So, I have to make the best of today.

What do you think makes someone at Texas Children’s a super star?
I believe a Texas Children’s Super Star goes above and beyond daily – not just when there’s a need or a call to assist. A Super Star leader is impactful, has influence and can make a difference.

What is your motivation for going above and beyond every day at work?
My motivation for going above and beyond daily is seeing the potential and growth of our staff. I challenge the staff every chance I get to do more and become more. We’re great at what we do but there’s still so much more for us to conquer and accomplish and see the benefits of our hard work.

What is the best thing about working at Texas Children’s?
The best thing about working at Texas Children’s is the people.

Anything else you want to share?
I’m extremely humbled and grateful for this recognition. This recognition motivates me to do more!

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Texas Children’s Mobile Clinic Program hosted the Fourth Annual Texas Mobile Health Clinics Regional Coalition Meeting March 20 at Texas Children’s Hospital West Campus.

Forty mobile clinic professionals – the largest turnout in the conference’s four-year history – attended the half-day event designed so that attendees could share information about a service that brings quality medical care to those who can’t easily access it.

“The time we have at this conference is invaluable,” said Texas Children’s Pediatrics President Kay Tittle. “It’s the one time a year we can get together, talk shop and gain knowledge about how we can improve what we do.”

In addition to sharing knowledge, five conference participants, including Texas Children’s Mobile Clinic Program, brought their mobile clinics to West Campus for all to see.

“Having this hands-on learning tool was wonderful,” Tittle said. “It was nice to see how other hospitals do things.”

The Texas Children’s Mobile Clinic Program is composed of two clinics: The Superkids Mobile Clinic and the Ronald McDonald Care Mobile. The mission of the program is to provide underserved children in the Houston area with comprehensive health care and preventive education.

During the school year, the Super Kids Mobile Clinic travels primarily to Houston Independent School District schools, community centers and churches in the Southwest Gulfton area. The Ronald McDonald Care Mobile travels primarily to HISD schools, community centers and churches in the Southeast Hobby area.

The clinic provides free vaccinations to those who qualify for the Texas Vaccines for Children program and also provides free well child visits, sick visits and hearing or vision screenings for uninsured children in the Houston area. In addition, both mobile clinics have pharmacies that are stocked with common medications.

The providers can perform common laboratory tests. Lastly, providers and staff members educate all patients coming through the clinic about the different insurance options available to them.

In the summer, the clinics travel throughout the Houston area and sometimes even further to provide free vaccines to children before the school year starts.

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Dr. Huda Zoghbi received the 2015 Mortimer D. Sackler, M.D. Prize for Distinguished Achievement in Developmental Psychobiology, awarded by Weill Cornell Medical College and Columbia University College of Physicians and Surgeons.

Zoghbi is the director of the Jan and Dan Duncan Neurological Research Institute at Texas Children’s, a professor of molecular and human genetics, pediatrics, neuroscience and neurology at Baylor College of Medicine, and a Howard Hughes Medical Institute investigator.

As a member of the National Academy of Sciences, Zoghbi has pioneered research on Rett syndrome and other rare brain disorders, and has advanced research of more common conditions including autism and adult neurodegenerative diseases.

In one of her most well-known achievements, Zoghbi provided a definitive genetic diagnosis for Rett syndrome and opened the door to a biological understanding and a search for treatment. Rett syndrome is a genetic neurological disease that usually affects young girls. Girls born with the disease develop normally for one or two years, but then begin to show progressive loss of motor skills, speech and other cognitive abilities.

Zoghbi has also found other genes, including Math1, an essential gene governing the development of cells critical for hearing, balance, and breathing, and the genes for spinocerebellar ataxia 1 and 6. Her work has led to a better understanding of neurodevelopmental and neurodegenerative disorders.

“We’re thrilled that Dr. Zoghbi is this year’s recipient,” said Dr. B.J. Casey, director of the Sackler Institute and the Sackler Professor of Developmental Psychobiology at Weill Cornell Medical College. “She’s dedicated herself to this field for decades and has made remarkable achievements. But we’re also recognizing her leadership in the field of neuroscience and her track record of mentoring young scientists as they embark on their own careers.”

The prize is named for the Dr. Mortimer D. Sackler, one of the most creative scientists in the field of developmental psychobiology. The Mortimer D. Sackler Foundation, Inc. endowed the prize in a gift in 2009.

“To have a prize bearing the name of someone who’s made such remarkable achievements in this field is a great honor,” Zoghbi said. “There are so many deserving scientists and physician-scientists out there who have done fantastic work. I feel truly honored to have been selected.”

Zoghbi plans to donate the $100,000 prize money to a mentorship fund that she established to help young female scientists get their work – specifically research on “bold, new ideas” – off the ground.