February 14, 2017

21417WallofHope250On September 8, 2011, Katy Haynes, a former neonatal nurse at Texas Children’s, became the patient family when her daughter, Maggie, was cared for at Texas Children’s neonatal intensive care unit (NICU).

Maggie was diagnosed with a giant omphalocele, a condition in which the abdominal muscles do not close properly and the intestines push out into the umbilical cord creating a large sac. She spent two weeks in the NICU.

“The staff started out as my colleagues and in the end, became the caregivers to our sweet Maggie,” Haynes said. “I truly owe Maggie’s short NICU stay to the great team that took care of her. They trusted me as a nurse and her mother, and worked with me to create a care plan that would work both in the NICU and at home.”

Today, Maggie is a thriving 5 year old. Despite having abdominal surgery, she is a strong, compact, muscular powerhouse. Haynes say her daughter excels at gymnastics and anything that she sets her mind to accomplishing.

The Haynes family is one of 10 NICU families featured in the second installation of the Wall of Hope, a permanent photography exhibit that was unveiled during a special ceremony on February 9 at Texas Children’s Pavilion for Women. The exhibit will be housed on the fourth floor of West Tower.

“The Wall of Hope was created to inspire and give hope to families who currently have a baby in the NICU at Texas Children’s,” said Family Centered Care Specialist Tamara Thrasher-Cateni, who worked with the Newborn Center Family Advisory Committee (NCFAC) and Facilities to coordinate the Phase II initiative and unveiling ceremony. “Babies born prematurely or with health issues can spend weeks and months in the NICU, so this exhibit is a way to celebrate all they have overcome.”

The Wall of Hope exhibit features 10 portraits chronicling each patient’s challenges throughout their time in the NICU and showcasing how they are thriving today.

“This event was emotional, informative and refreshing,” said Erika-Michelle Best, whose daughter, Nalah, was treated for osteogenesis imperfecta, also known as brittle bone disease, in the NICU for 14 weeks. “It is refreshing to know that you’re not alone. It is also an honor to know Nalah’s story can help someone else, uplift someone, brighten their day and most importantly give them hope.”

The unveiling ceremony also included remarks from Texas Children’s Chief of Neonatology Dr. Gautham Suresh, NICU Nursing Director Heather Cherry, and Newborn Center Vice President Judy Swanson.

“Looking at the photographs of our NICU graduates, listening to the parents speak about their children with pride and describing how much joy the children brought to their families, I am reminded about the true reason why all of us come to work every day at Texas Children’s,” Suresh said. “I feel privileged to serve and give our patients and their families the best care possible. I am humbled by the strength and resilience of the children and their families.”

February 7, 2017

2817P3patientsatis640“There is no question that it was worth the wait to have my great granddaughter seen and cared for by such thorough and caring professionals,” wrote a Texas Children’s patient family. “It is obvious why extremely sick children from all over the world are brought to Texas Children’s for treatment.”

This heartfelt sentiment shared by the great grandmother of a 4-month-old child who was treated at Texas Children’s Emergency Center shows how important it is to keep the patient family’s experience at the forefront of everything we do to optimize the compassionate care we provide to patients and their families.

At Texas Children’s, we are doing just that. Due to the tremendous dedication of our employees and staff, the organization exceeded its P3 goal for patient satisfaction in FY16 by five percentile rank points.

While being in the fifty-eighth percentile means Texas Children’s performed better than 58 percent of other leading women’s and children’s hospitals, this percentile is more than just a number. It reflects our commitment to improving the experience for every patient and family who comes to Texas Children’s for care.

“We are consistently collecting feedback from patient families and measuring it against both our past performance and the performance of our peers,” said Texas Children’s Director of Patient and Family Services, Katie Kalenda Daggett. “Improvement initiatives and activities implemented across the system are directly related to feedback received from patient families through the survey.”

The patient satisfaction survey is administered by Press Ganey to patient families at Texas Children’s Medical Center Campus, Texas Children’s Hospital West Campus, Texas Children’s Pavilion for Women and Texas Children’s Hospital The Woodlands. On a scale from 1 to 5, families are asked about their experience from scheduling an appointment to being discharged. This survey also contains a comment section where families provide detailed responses about their experience.

“The richest component in the survey are the comments submitted by our patient families,” said Maggie Weimer, senior project manager of Patient and Family Services. “They pour their hearts out sharing everything from what we did well in to what we could have done differently, and individually recognize staff members who went above and beyond to make their experience an exceptional one.”

Based on Press Ganey survey results, the Patient Experience Team will be focusing on several priority initiatives in FY17, one of which is to improve the elevator experience for patients and families who depend on the Clinical Care Tower elevators to shuttle them to and from their clinic appointments.

“This has been a huge, on-going concern for our patient families,” said Elisa Mozley, assistant director of Patient and Family Services. “We are partnering with Facilities, HR and other teams from across the hospital to develop creative solutions that we can implement to improve the patient experience around elevator use.”

Additional efforts this year will be placed on providing more food options for inpatients at the Medical Center Campus through the MyDining initiative and optimizing employee visibility of the Caught You Caring Program, an organization-wide initiative that has recognized hundreds of employees for their everyday acts of kindness and other “above and beyond” efforts to show they care for Texas Children’s patients.

“We are focusing our patient experience efforts around the concepts of compassion, communication and connectedness,” Daggett said. “Hardwiring these principles into actions throughout the organization will demonstrate to our patients and their families that we put them first, all while working to create a healthier future for children and women.”

2817transplant640Transplant Services at Texas Children’s Hospital continues to prove that we are at the forefront of pediatric transplantation in the United States performing 86 transplants in 2016.

Some of last year’s highlights include:

  • The heart transplant program finished the year as the No. 1 pediatric heart transplant program in the country with 25 transplants.
  • The lung transplant program tied with St. Louis Children’s Hospital’s for the No. 1 pediatric lung transplant program in the country spot with 8 transplants.
  • The kidney transplant program ended the year as the No. 2 pediatric kidney transplant program in the country, experiencing its highest volume since the program’s inception in 1988 with 32 transplants.
  • The liver transplant program performed 21 transplants and the liver and lung programs teamed up to complete a liver/lung transplant.

Dr. John Goss, medical director of Transplant Services, said Texas Children’s Transplant Services continues to earn its reputation as one of the best pediatric transplant programs in the country.

“I believe our success is a testimony to the skill and commitment of our multidisciplinary team, which offers an interdisciplinary approach to all aspects of the transplant process, from initial referral to hospitalization and outpatient management,” Goss said. “We also work closely with patients, families and referring physicians to help make the evaluation process as convenient and efficient as possible.”

Goss added that the success of Texas Children’s transplant program would not be possible without the gifts from our selfless donors and their families.

“They are the ones responsible for providing our patients with a second chance at life,” he said. “We are forever grateful for their unwavering kindness.”

To learn more about Texas Children’s Transplant Services, click here.

Since leaders opened the doors at Texas Children’s Hospital West Campus more than five years ago, they have held regular town hall-style meetings to keep their employees informed of the hospital’s progress, challenges and goals as well as to gain feedback from employees and answer their questions.

“Town halls are an opportunity to both provide information and solicit feedback,” said West Campus President Matt Schaefer. “It’s important that we take time to both ‘talk to’ and ‘talk with’ the team of talented folks across our campus.”

View photos below from the first of a series of town hall events and watch the video below to get a glimpse of West Campus’ accomplishments in 2016 and their goals and aspirations for this year.

Walking into a conference room with a standing-room-only crowd, Schaefer kicked off the first town hall meeting at West Campus on February 1 with a congratulatory statement and a thank you for making 2016 “a wildly successful year.”

“2016 was a fantastic year any way you look at it – we grew our capabilities, served more patients than ever, had stronger than ever patient satisfaction and continued high employee engagement results, and grew our team all at the same time,” he said. “But, we recognize there were various challenges each of you overcame to meet our goals and we thank you for that.”

Director of Support Services Amy Cress, director of Outpatient and Clinic Support Services Jennifer DiPrisco and director of Patient Care Services Jennifer Sanders took the stage next and shared plans for continued growth in 2017 and that there always will be challenges to overcome but that because of West Campus’ phenomenal staff anything is possible.

“The fuel to our success is you,” Cress said. “With your help, we, like in years past, we can accomplish anything we set our minds to.”

Cress and the other leaders went on to outline West Campus’ 2017 goals, which include:

  •  Opening the Bellaire Health Center in April
  •  Expanding clinic space on the third and fourth floors of the campus’ Medical Office Building
  •  Opening a new 22-bed critical care unit in October
  •  Starting the planning process for construction of an on-site Texas Children’s Urgent Care next to the hospital’s Emergency Center
  •  Additional town hall meetings are scheduled this week at the Sugar Land, Clear Lake and Cy-Fair Health Centers.
January 31, 2017

2117heartmarathoninside640When Jack Guyre was born, he was diagnosed with a congenital heart defect called Tetralogy of Fallot, which changes the normal flow of blood through the heart. Surgeon-in-Chief Dr. Charles Fraser Jr. repaired the defect when Jack was 9 months old. Following a relatively healthy childhood combined with monitoring by Texas Children’s cardiologists, Dr. Henri Justino placed a stent via catheter in Jack’s heart in 2014.

Jack, now 12, isn’t restricted in his activity, and he is not on any medication. He visits Texas Children’s once a year for a check-up and enjoys playing competitive soccer. With the approval of his cardiologist, Dr. Daniel Penny, Texas Children’s cardiology chief, Jack set out to accomplish a bucket list goal – completing the 2017 Aramco Houston Half Marathon.

On January 15, in a sea thousands, Jack crossed the finish line alongside his mom and dad with an impressive time of 2:44:25. Though he will likely need to undergo heart surgery again in the future, his parents and doctors couldn’t be prouder.

“Jack has overcome challenges that none of us, thankfully, have had to face,” Penny said. “And he’s come through those with great spirit and determination.”

Click here to watch Channel 11 KHOU’s story about Jack’s extraordinary accomplishment.

January 17, 2017

11817NEURO640“My 5-year old daughter is such a cute, vivacious little girl who lights up a room,” said mom Evonia Dunlap. “When Bristol was born, she was perfectly healthy but by the time she was 3 months old, she was failing to reach her milestones and began showing worrisome symptoms.”

Bristol could not lift her head up or sit upright, her body was unusually floppy and flexible, and her left eye began turning inward, even though her vision was fine. As Bristol grew older, she was slow to crawl, stand and walk, and had difficulties in chewing, swallowing and talking.

“My daughter seemed to be very resistant to physical pain,” Dunlap said. “She would never cry when she fell down, bumped into things or received her vaccine shots, which was very, very unusual.”

Bristol was diagnosed with congenital hypotonia, a symptom that can be caused by various neurological or non-neurological conditions, which explained the poor muscle tone throughout her body. She had corrective eye surgery and Dunlap credits the physical, occupational and speech therapies with helping her daughter sit, walk and communicate.

But there was one thing Dunlap wanted to know. What caused Bristol to develop hypotonia?

After consulting many specialists who performed a battery of diagnostic tests and assessments for cerebral palsy, Down syndrome, autism, muscular dystrophy and many others, the results came back negative. Whole exome sequencing, a test that looks for misspellings in a gene, was inconclusive.

After five years searching for answers, Dunlap’s medical odyssey ended at Texas Children’s when Bristol was referred to neurologist Dr. Hsiao-Tuan Chao and geneticist Dr. Michael Wangler, physician scientists in Dr. Hugo Bellen’s lab at the Jan and Dan Duncan Neurological Research Institute (NRI) at Texas Children’s.

Bellen’s team is an important part of the Undiagnosed Disease Project, a national network established by the National Institutes of Health. Through this initiative, they came to know of a 7-year-old boy who had symptoms remarkably similar to Bristol’s and carried a point mutation in the Early B-Cell Factor 3 (EBF3) gene.

After closely re-examining Bristol’s exome sequencing results, they found she also carried the exact same mutation that produces defective EBF3 protein. Since EBF3 is a master regulator of hundreds of other genes, even the tiniest alteration in its function could potentially cause widespread damage to the developing nervous system and muscles.

The team also learned of another little girl at NYU’s Langone Medical Center who had a similar medical history and was found to carry the exact same EBF3 mutation. The NRI team thought this was truly remarkable and postulated that variation in EBF3 could be the possible link between these two children and Bristol.

The team extensively studied the fruit fly and mammalian versions of EBF3 and concluded the point mutation in EBF3 was indeed the culprit behind the symptoms exhibited by Bristol and the others. In the last six months alone, at least 20 patients around the world have been found to carry the damaging mutations in the EBF3 gene.

While the journey to find a cure for this condition has just begun, Dunlap is happy to finally have some answers.

“Thanks to this study, physicians around the world will now have some understanding of this condition, which we anticipate, will help to diagnose many children in the future,” Dunlap said. “I fervently hope I can now connect with other families of children with EBF3-related disorders so we can learn from and support each other.”

11817CNOR640For the third year in a row, Texas Children’s Hospital has been named CNOR Strong by the Competency and Credentialing Institute (CCI).

To achieve this recognition, more than 50 percent of a hospital’s operating room (OR) nurses’ must undergo a rigorous process that involves mastering high standards of perioperative practices before nurses can earn their individual CNOR certification.

“Words cannot express how proud I am to be the leader of an OR that is CNOR strong for the third year in a row,” said Amanda Austin, manager of Surgical Services at Texas Children’s. “It has been amazing to watch the dedication and drive grow amongst the OR nurses who worked extremely hard to achieve this milestone. They are showing their passion for what they do.”

While obtaining the CNOR designation is not an easy task and requires lots of study and preparation, this nationally recognized certification exemplifies Texas Children’s commitment to being the best of the best in the delivery of safe patient care.

“It all goes back wholeheartedly to being patient advocates that set the highest bar for the care we provide to our sleeping patients,” said Nakeisha Archer, director of Perioperative Services at Texas Children’s Pavilion for Women and president of the Greater Houston Chapter of the Association of PeriOperative Registered Nurses. “We are proud of being designated as a whole, and putting the Pavilion for Women on the map as the first women’s hospital to become CNOR strong internationally.”

Research shows that nurses who earn the CNOR credential have greater confidence in their clinical practice. A team of CNOR certified nurses who have mastered the standards of perioperative practice furthers a culture of professionalism and has been correlated to improved outcomes in surgical patients.

In a recent study published in the journal of the Association of Perioperative Registered Nurses, hospitals with high rates of specialty nursing certifications saw significant lower rates of central-line associated bloodstream infections among surgery patients. The study also found that a 10 percent increase of CNOR’s and other support certified nurses resulted in an 8 to 16 percent reduction in surgical infections.

“I am honored to be involved with an institution and perioperative departments that have a commitment to excellence,” said Janet Winebar, director of Perioperative Services at West Tower. “I commend the individual OR RNs who have worked so hard to achieve this honor and their leaders for supporting them.”