June 3, 2014

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Some children with autism appear to be developing normally when they are very young. They babble or even talk, make eye contact with their parents and crawl and walk on schedule. Then suddenly, these skills seem to vanish.

Described as developmental regression, this loss of language, motor or social skills occurs more often in Black and Hispanic children compared to White children, according to a study led by Dr. Adiaha Spinks-Franklin, associate director of the Meyer Center for Developmental Pediatrics at Texas Children’s Hospital.

“Lost skills are very difficult to recover and unfortunately, there is no way to prevent developmental regression,” said Spinks-Franklin. “What we know is important is helping children with autism learn to communicate better, develop improved social skills, engage in more functioning behaviors, participate in an appropriate school curriculum that addresses their unique needs and learn to function as independently as each child can.”

Spinks-Franklin and her team analyzed data on 1,353 preschool children with autism enrolled in the Autism Speaks Autism Treatment Network database between March 2008 and December 2011. The database includes demographic and medical information on each child enrolled at one of 17 locations across the United States and Canada. Information collected included whether parents reported that their child had lost skills.

Results showed that 27 percent of children experienced developmental regression according to their parents. Black children were twice as likely to have parent-reported regression compared to White children. Hispanic children were about 1.5 times more likely than White children to lose early skills according to their parents. This difference was apparent even when researchers controlled for primary caretaker’s education and the child’s insurance status.

“Each child with autism is a unique individual with their own strengths and challenges,” said Spinks-Franklin. “It is very important that all parents in all communities become aware of the early signs of autism – poor communication skills, impaired social skills and unusual behaviors and interests.”

According to Spinks-Franklin, the rates of Autism are the same among African American, Hispanic and White children. However, African American and Hispanic children are generally diagnosed with Autism at later ages than White children and have less access to much-needed educational, therapeutic and medical resources that are designed to help address the needs of children with Autism.

The study, which is an insightful exploration of racial disparities among children with Autism, is Spinks-Franklin’s latest step towards understanding how culture impacts child development. Her previous research experience includes studying the development of children in Senegal, West Africa, and studying the mental health impact of the aftermath of Hurricane Katrina on school-aged African American children in Houston, as well as exploring the racial identity development of school-aged African American and Latino children in the Houston area who participated in a reading intervention program.

“The earlier a child is diagnosed with Autism, the better chance they have to receive the help and interventions the child needs to function to the best of their ability,” said Spinks-Franklin. “One of my goals is to increase awareness of Autism in underserved communities in the Houston area in order for all children to have a better chance of obtaining the help they may need.”

If a parent reports that a child has lost a developmental skill, health care providers should address the parent’s concerns with appropriate screening and referrals. Texas Children’s staff should be aware that there are many community-based and school-based services available to support and help children who have Autism and their families.

Spinks-Franklin presented the study, titled “Racial Differences in Developmental Regression in Children with Autism Spectrum Disorders” on May 6 at the Pediatric Academic Societies (PAS) annual meeting in Vancouver, British Columbia, Canada.

May 27, 2014

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Texas Children’s recently received an impressive report card from The Joint Commission with surveyors commending the hospital for demonstrating several best practices.

“Our survey results are a great indication that we are meeting the expectation of quality care for our patients,” said Texas Children’s President and CEO Mark A. Wallace. “This should only propel us to continue our focus on providing safe, quality care every single day for every one of our patients.”

Every three years, Texas Children’s undergoes an accreditation process by The Joint Commission survey team to ensure our delivery of high-quality patient care. Five surveyors arrived at Texas Children’s for a five-day survey on May 12. The survey team included a pediatrician for inpatient areas and the medical staff, and another pediatrician for ambulatory areas, an Ob/Gyn specialized nurse, pediatric nurse and a life safety engineer.

What Joint Commission noted

The survey is intended to assess the organization’s compliance in patient care areas that contribute to positive outcomes and to measure and improve performance. The Joint Commission team was very impressed with our improved outcomes in asthma, diabetes, radiology efficiency and flow, patient flow and surgical complications. The team also identified several best practices observed during the survey, including:

  • Time out processes across the system
  • Error prevention technology in the anesthesia ad pharmacy areas
  • Use of data to improve patient outcomes

“The Joint Commission survey team visited several Texas Children’s facilities to evaluate patient care processes through on-site observations, interviews and tracer methodology,” said Mary Jo Andre, Texas Children’s senior vice president of Quality and Safety. “Surveyors use tracer methodology to retrace the specific care processes that a patient experienced by observing and talking to staff in areas where the child received care.

“The surveyors were very impressed with the knowledge and confidence of the staff and faculty who participated in the tracer interviews. They complimented them also on their ability to navigate Epic and explain the continuum of care. Most importantly they were impressed with their ability to talk about quality projects and outcomes. We are very proud of their performance.”

How we prepared for the survey

Preparing for regulatory surveys is an ongoing process underscored by Texas Children’s daily focus on patient safety and high quality programs. About six months before our anticipated Joint Commission survey, Texas Children’s hires a consultant to review our processes and evaluate our survey readiness. The information provided by the consultant helps the organization fine tune.

“The results we get from area tracers during that preparation process provide information we need to develop and implement an organization-wide readiness education program,” said Trudy Leidich, Texas Children’s director of Quality and Safety and Medical Staff Services. “But we regularly evaluate our internal processes against regulatory guidelines to identify opportunities for improvement. Regulatory surveys are valuable evaluation tools, but we have a deliberate focus on the quality and safety of our patients’ care every day.”

An independent, not-for-profit organization, The Joint Commission accredits and certifies more than 20,500 healthcare organizations and programs in the United States. Approximately 77 percent of the nation’s hospitals are accredited by The Joint Commission. Accreditation surveys are unannounced, so preparation is a crucial, on-going process.

“Accreditation by The Joint Commission means Texas Children’s meets the highest quality and safety standards in patient care,” Wallace said. “It gives patients peace of mind knowing that our facilities are surveyed routinely and that we meet or exceed a comprehensive assessment of the care we provide.”

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Peter Hotez, president of the Sabin Vaccine Institute and Texas Children’s Hospital Endowed Chair in Tropical Pediatrics, put the spotlight on neglected tropical diseases (NTDs) in the Central African Republic (CAR) through a recent op-ed piece in the Huffington Post. With just more than five million people, CAR is considered one of the most remote and economically devastated countries in Africa – and according to Hotez, its brewing brutal civil war could mean an overwhelming increase in disability and death caused by NTDs if action isn’t taken quickly.

“NTDs and poverty reinforce each other through mechanisms that involve reductions in workforce, food insecurity and the health of girls and women. Less well known, but equally important social forces, in promoting NTDs, are war and conflict,” said Hotez. “CAR has a fragile health system to begin with. If we now superimpose conflict and war, it could result in near or complete collapse and inability to provide treatments.”

CAR is one of Africa’s largest sources of endemic and hyperendemic NTDs, and the numbers are staggering. Approximately 1.5 million children require periodic deworming for their intestinal helminth infections, of whom more than 500,000 also need regular treatment for schistosomiasis. Hotez explains that while all of the most common NTDs, such as intestinal worms and schistosomiasis, are of concern in CAR, there also is reason to be especially worried about NTDs transmitted by insect vectors such as kala azar and African sleeping sickness. According to the World Health Organization (WHO), CAR is one of four African countries annually reporting more than 100 cases of the Gambian form of sleeping sickness, which usually leads to death in two to three years.

Currently, neither the United States nor the United Kingdom governments support NTD control and elimination programs in CAR, and there is very little private philanthropic money focused on NTDs going to support such measures. The END Fund, a private philanthropic fund dedicated to combatting NTDs, was one exception and supported NTD control efforts in CAR in 2012. But due to the impact that violence and instability had on the ability for program partners to move forward with mapping and mass drug administration (MDA) activities, the END Fund had to place support to CAR on hold.

“NTD control often falls off the priority list when conflict arises as agencies and governments focus on providing food, shelter and security to affected populations,” said Hotez. “As MDA often mobilizes thousands of health workers to treat millions of people at risk of NTDs in a short period of time, the activities can be dangerous in times of conflict.”

While the majority of health organizations in the U.S. don’t seem focused on NTDs in CAR yet, Texas Children’s is highly aware of the situation there, stressing how important it is that the people of CAR receive access to essential NTD medicines.

“Texas Children’s Hospital is emerging as the first truly global children’s hospital – we take care of the world’s children,” said Hotez. “This is an absolutely unique vision pioneered by Dr. Mark Kline and Mark Wallace, but also extends to Drs. Michael Belfort and Chuck Fraser who are committed to women’s health and surgical issues in resource-poor settings.”

To ensure that NTDs are not further neglected during times of crisis in CAR, Hotez calls for engagement from health agencies with expertise in complex emergencies and a willingness to ensure NTD control efforts remain a priority.

He also is working tirelessly to develop vaccines that can be administered in places like CAR to help eliminate the spread of NTDs. The Sabin Vaccine Institute and Texas Children’s Hospital Center for Vaccine Development are pioneering the development of a human hookworm vaccine and schistosomiasis vaccine. They also have a new vaccine for leishmaniasis under development.

“At Texas Children’s, we are very concerned about the suffering of children everywhere,” said Hotez. “We’re making vaccines for the world’s poor.”

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By Dr. Tiffany McKee-Garrett

When a baby is born, parents want nothing more than to love and protect their child. Part of that protection starts right after birth with the administration of a vitamin K injection. Babies are not born with sufficient vitamin K levels and cannot get adequate amounts of vitamin K from breast milk, so this injection, given within the first hour after birth, is crucial because it helps a baby’s blood to clot normally, which prevents vitamin K deficiency bleeding (VKDB) in newborns.\

A dangerous trend
A recent CDC report confirmed that there has been a nationwide increase in parents refusing the vitamin K shot for their newborns – and this dangerous trend, often based on inaccurate information found online and faulty science, is causing more babies to experience hemorrhaging that is preventable and may cause brain damage or even death in some cases.

In the United States, administration of intramuscular vitamin K at birth to prevent all forms of VKDB has been standard practice since first recommended by the American Academy of Pediatrics in 1961. Without the shot, the incidence of early and classical VKDB ranges from 0.25 percent to 1.7 percent of births and the incidence of late VKDB ranges from 4.4 to 7.2 per 100,000 infants. The relative risk for developing late VKDB has been estimated at 81 times greater among infants who do not receive intramuscular vitamin K than in infants who do receive it.

Early VKBD usually presents in previously healthy appearing infants as unexpected bleeding during the first two weeks of age, usually between the second and fifth day after birth. The bleeding can present as oozing from the umbilical cord area, bleeding from the circumcision site, persistent oozing from puncture sites, gastrointestinal hemorrhage, and/or bleeding into the brain, which can result in significant neurological complications that have a lifelong impact on a child.

Late VKDB is an indication of severe vitamin K deficiency and presents as unexpected bleeding, including brain bleeds in infants 2-12 weeks of age. Complications of late VKDB may be severe, including death. It classically presents in exclusively breastfed infants who received either no or inadequate neonatal vitamin K. It can also present in infants with intestinal malabosorption defects.

The myths
One myth about vitamin-k injections is that they are linked to leukemia, but studies show absolutely no relationship between getting vitamin K as a baby and an increased risk of leukemia. Another myth is that the vitamin K injection increases the risk of jaundice – which is inaccurate. Jaundice associated with vitamin K has been observed only in high risk babies (such as premature babies) in doses 30-60 times higher than the dose we give.

Some parents also argue that injections cause babies pain, but this pain is very brief and the benefits of the injection are very much worth a short period of discomfort. Parents are encouraged to mitigate this brief uncomfortable experience by holding baby skin to skin before and after the injection or allowing the baby to breastfeed before, during and/or after getting the injection.

In the not so distant past, infants and children had high rates of dying early in life. During the 20th century alone, the infant mortality rate declined greater than 90 percent and the maternal mortality rate declined 99 percent! Much of this is due to advancements in modern medicine. While it might seem nice to do things completely naturally, modern medicine has saved the lives of countless mothers and babies.

May 20, 2014

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Eva and Jay Heintz were enjoying a blissfully uneventful twin pregnancy in Hammond, LA, when their world was turned upside down at Eva’s 19-week check-up.

Her MFM specialist detected polyhydramnios in one twin’s sac and oligohydramnios in the other twin’s sac and quickly made the diagnosis of Twin-Twin Transfusion Syndrome (TTTS). From there, the bad news kept coming. Even though Eva’s ultrasound had been normal just two weeks earlier, the disease had progressed rapidly to an advanced stage of TTTS, (Stage 3) which involved cardiac Doppler abnormalities with selective intrauterine growth restriction. Action needed to be taken quickly if there was any hope of saving Eva’s twins.

Her MFM called Texas Children’s Fetal Center with a referral, and by the time she arrived home from her doctor’s appointment, Jayme Molohon, the nurse coordinator at Texas Children’s Fetal Center who received Eva’s case, had already started to make arrangements for Eva to be seen in Texas the next day.

“The nurses simply could not have been more warm and comforting as I prepared for my surgery,” said Eva.

“Once a referral comes through the Fetal Center, we try to get these patients in as quickly as possible due to the nature of the disease,” said Molohon. My relationship with the family starts with the first phone call I make to introduce myself. You can almost feel their anxiety and fear through the phone because you know they just want someone to help their child. My job is to make these families and patients as comfortable as possible and see that they understand their reasoning for coming all the way to Houston.”

But her role as a nurse coordinator extends far beyond that first call. Prepping for surgery involves a comprehensive initial evaluation. Patients like Eva start with an initial anatomy ultrasound, fetal echocardiogram, genetic counseling MFM consultation and fetal intervention consultation. The entire team on the fourth floor of the Pavilion for Women is a part of the patient’s evaluation. If babies meet criteria for surgery, the patient will meet with pre-anesthesia testing and possibly neonatology, if of viable gestational age. The nurse coordinator is then in charge of scheduling all appointments, verifying insurance authorization and also assisting in housing, if the patient has limited means. She also reviews all prenatal records and obtains any additional records depending on maternal conditions. And according to Molohon, one of her most important roles is to offer the family hope and the knowledge that the Fetal Center staff will fight for them.

“I am with the patient and their family every step of the way,” she said. “I develop relationships with patients that go beyond the fetal surgery. All my patients touch my heart in some shape or form. We experience a bond that can never be shared with anyone else. You may not be related to them by blood, but they will never forget how much of an impact you made in their lives and their children’s lives.

Eva underwent laser ablation surgery led by Dr. Alireza Shamshirsaz – a procedure that is still rare in other hospitals, but has become routine at Texas Children’s where the Fetal Center sees TTTS cases every week. Eva’s surgery was a success, but she still wasn’t in the clear.

“The families that go through fetal intervention always understand there is a risk that their children may not make it after surgery,” said Molohon.

After the procedure, doctors explained that the next important step would be surviving the night after surgery. At 6 a.m. the next morning, a team of doctors entered Eva’s room for the important evaluation – and looks of joy were exchanged as they found two heartbeats.

“When I found out that both babies were alive and made it through surgery, I said a prayer,” said Molohon. “Life is so precious and you always want the best possible outcome for these patients. Eva was such an amazing patient and wanted to do everything right to make sure her babies were okay. To see pictures of her twins now and how beautiful they are makes you appreciate all the hard work and dedication that we do every day in the Fetal Center.”

Eva’s story is a prime example of the high level of care that goes into TTTS cases at Texas Children’s Fetal Center.

“I saw and felt what it is like to have doctors invest themselves in, not only your outcome, but in your future and the future of your family, said Eva. “It felt so personal and special, and I will never forget that feeling. Through all the exhaustion and ultimately joy that this experience has brought me, I often reflect of my time at Texas Children’s Hospital.”

May 13, 2014

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More than 200 physicians, nurses and operating room staff attended the 5th annual Edmond T. Gonzales Jr., Surgical Research Day at Texas Children’s Pavilion for Women on May 9. The event provided a forum for researchers to unveil their work highlighting remarkable advancements in the field of pediatric surgery.

“Surgical research, both basic and clinical, is central to our core values as academic surgeons at Texas Children’s Hospital,” said Charles Fraser, Jr., surgeon-in-chief at Texas Children’s Hospital. “Today’s presentations highlight the exciting and innovative work being done by our surgical colleagues, residents and students.”

The program featured six oral presentations and 86 poster presentations spotlighting the academic efforts of the surgical faculty, post graduate trainees, nursing personnel and operating room staff. Each year, physicians are asked to submit abstracts of their research to be considered for oral presentations for Surgical Research Day and a leadership committee makes the final selection.

This year’s keynote speaker, Dr. N. Scott Adzick, presented “Prospects for Fetal Surgery.” Dr. Adzick is the C. Everett Koop profession of pediatric surgery and surgeon-in-chief at The Children’s Hospital of Philadelphia.

Lynn Sessions, J.D., a health care privacy lawyer at BakerHostetler in Houston, delivered the ethics presentation, “Mobile Technology in Health Care: Convenience or High Risk.”

The annual event wrapped up with a special awards recognition ceremony. Here are this year’s winners:

Best Oral Presentation
Dr. Fariha Sheikh, Pediatric Surgery
“Anesthesia-Induced Neurotoxicity in the Mid-Gestation Fetal Sheep”

Best Poster
Dr. Scott Rosenfeld, Orthopaedics
“Evaluation of Talo-calcaneal Coalitions Using 3D Printed Models”

Samuel Stal Research Award
Dr. Irving Zamora, third year clinical research fellow, Pediatric Surgery
Dr. Yesenia Rojas, third year basic science research fellow, Pediatric Surgery

Click here to access all presentation slides (This link will only open internally)

Surgical Research Day Photo Gallery

May 6, 2014

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Nearly 2,500 make up the nursing team at Texas Children’s. Representing the largest segment of our workforce, nurses play a significant role in almost every aspect of the patient and family-centered care we provide across the system. Each year, National Nurses Week is dedicated to these men and women who work tirelessly every day to ensure every patient and their family receives Texas Children’s quality care. This year, the theme of national Nurses Week is “Nurses Leading the Way.”

“This year’s theme is a perfect one for nursing at Texas Children’s,” said Chief Nursing Officer and Senior Vice President Lori Armstrong. “It is reflective of the role that nurses play across the organization in every clinical setting. Every nurse is a leader in the eyes of our patients and their families.”

As a tribute to the founder of modern nursing, Florence Nightingale, Nurses Week is celebrated from May 6 through May 12, Florence’s birthday. For the Texas Children’s nursing team, it’s a week of celebrations and a chance to all to say thank you to the nursing staff for their vast contributions across the organization.

Say thank you to the hard working men and women on our nursing team – send them a card today.