May 18, 2016

51816camppumpitup640Themed “Dragons and Dinosaurs” and packed with fun activities such as horseback riding, cast fishing and canoeing, Camp Pump-It-Up hosted 139 campers this year at Camp for All in Burton, Texas.

Volunteers from Mended Little Hearts of Houston managed the craft in the Art Barn and every camper left with their own hand-made dinosaur hat. One of the event’s highlights was the Wishboat ceremony, held by the lakeside. Each cabin of campers went before the camp and read off their wishes for the future. There were a lot of wishes for a world without bullying or sadness, but many campers simply wished for a normal life apart from their heart disease. Brothers and sisters wished away their siblings medical treatments and hospital stays. There were also were many wishes for Camp Pump-It-Up to never end.

Camp Pump-It-Up is a camp specifically designed for children and teenagers who have been affected by congenital heart defects. Every April, around 125 Texas Children’s patients and their siblings spend a weekend at the Camp For All campgrounds in Burton, Texas, fishing, riding horses, dancing and zip-lining with other kids who have a similar diagnosis. This location offers a unique and barrier-free camp opportunity that allows kids to be kids, despite their physical limitations or medical situation. Many of the children who attend Camp Pump-It-Up are unable to attend other summer camps because of their medical complexity.

This special weekend allows children to meet other kids who may have shared similar experiences. Often, children find strength from sharing their experiences of hospitalizations, taking medication and having surgeries. This camp provides them with a sense of normalcy by allowing them the opportunity to do camp activities like any other kid.

Camp Pump-It-Up is staffed by a large group of Texas Children’s employees, mostly from the Heart Center, as well as volunteers. There were 55 volunteers at this year’s campus, 33 of which were Texas Children’s Employees.

To read more about Camp Pump-It-Up, click here.

May 3, 2016

5416MothersDay640Because of the outstanding quality of care provided at Texas Children’s, there are endless stories about how our faculty, staff and employees have changed people’s lives. These stories remind us and others how big of an impact we can make and how humbling our jobs often can be. In honor of Mother’s Day, here are two stories about Texas Children’s patients whose lives were changed by our Heart Center and Transplant Services teams.

Grandmother, mom, daughter share bond through congenital heart disease diagnoses

To say Sherry Brown, her daughter, Tracy Moore, and granddaughter, Kennedie, have a special relationship would be an understatement. Other than the quintessential bond which has grown throughout the lineage’s time together, they also share congenital heart disease diagnoses.

When Tracy was born, doctors discovered she suffered from an atrial septal defect (ASD), a “hole” in the wall that separates the top two chambers of the heart. The Palestine, Texas native and her family traveled to Houston for expert pediatric heart care at Texas Children’s Hospital. Tracy was monitored growing up and underwent surgery to repair the congenital heart defect when she was 17-years-old.

The family’s experience with congenital heart disease deepened when Tracy’s daughter, Kennedie, was diagnosed with an ASD and valve issue when she was 4-months-old. As soon as Tracy left Kennedie’s local doctor’s office, she knew there was only one heart center team equipped to care for her daughter. It was the same expert team her mom had entrusted to take care of her when she was a little girl – the cardiovascular surgeons and cardiologists at Texas Children’s.

“It’s the only place to be treated,” Tracy said. “When you’re at Texas Children’s, you not only feel grateful for the care you’re receiving, but you also feel grateful for what you have when you see what other families are going through.”

Kennedie, now 10-years-old, has undergone three surgeries with cardiovascular surgeons Dr. Dean McKenzie and Dr. Jeffrey Heinle, and is closely monitored by a pediatric cardiologist as she matures. During each of Kennedie’s surgeries, Sherry supported Tracy in a way no one else could. Ironically, Sherry was also diagnosed with congenital heart disease, but not until she was 53-years-old. In 2003, she too underwent surgery with Dr. Charles D. Fraser Jr., surgeon-in-chief and chief of congenital heart surgery at Texas Children’s, and had a second valve repair just last year.

Though grown adults, Sherry and Tracy continue to be cared for by doctors at Texas Children’s. Dr. Wayne Franklin, director of the Adult Congenital Heart Disease Program at Texas Children’s, and his team see more than 1,800 adults like Sherry and Tracy in clinic each year. The expert team is trained in both pediatric and adult heart disease, ensuring the continuum of care from childhood through adulthood is maintained. Franklin advises patients on health and lifestyle choices for their adult needs, including physical challenges, exercise options and family planning.

Sherry cherishes the relationship she has with her daughter and granddaughter. “God has blessed me,” Sherry said. “To be able to go through something like this with my daughter as she’s having her child who also has heart disease creates one big, special bond.”

Mother donates kidney to son, gives him second chance at life

When Mary Churchman was pregnant with her son, Kyle, he was diagnosed with a posterior urethral valve. Due to the condition, he had extra flaps of tissue that grew in his urethra, causing a blockage of the normal flow of urine and damage to one of his kidneys. Doctors in New Orleans told the Churchmans Kyle wasn’t going to live an hour and if he did, he would likely need a kidney transplant by age two or three. He defied those odds.

The family moved from New Orleans to Lake Charles, La. shortly before Hurricane Katrina hit. Following the devastating storm, Kyle’s doctors scattered leaving the family in search of an expert team to care for their young son. The Churchmans discovered Texas Children’s Hospital, and Kyle has been followed by the hospital’s kidney transplant team ever since. Recently, it was determined the now 13-year-old was finally in need of a transplant.

Kyle’s dad was tested first and was a match, but due to his anatomy, wasn’t an ideal candidate for transplant. Once Mary went through the screening process and it was determined she was a match, surgery was scheduled. The Churchmans were both excited and nervous. On Feb. 4, 2016, Dr. Christine O’Mahony, surgical director of kidney transplantation at Texas Children’s, harvested Mary’s kidney and transplanted it into Kyle. Following a two-month stay in Houston for their recovery, Kyle and Mary joined the rest of the family back home in Lake Charles.

Kyle is now thriving and didn’t even realize how bad he felt prior to transplant. The family is so thankful to the team at Texas Children’s for helping Mary give her son the gift of life.

“To be able to give him this gift is amazing and a true honor, especially as his mom,” Mary said. “When I delivered him, we didn’t even know if he was going to make it and now he has another chance at life. It’s a blessing.”

5416drpenny175Dr. Daniel Penny, chief of pediatric cardiology at Texas Children’s Hospital, was recently honored with the American College of Cardiology’s 2016 International Service Award. The award recognizes an individual with a strong commitment to providing a specific service to enhance cardiovascular care and/or education in medically developing or underdeveloped countries.

“I am truly honored to receive this distinguished award,” said Penny, who is also section head and professor of pediatrics-cardiology at Baylor College of Medicine. “It is a privilege to be recognized on behalf of the team who worked in Vietnam.”

In 2009, Penny visited central Vietnam as an invited lecturer. While there, it became apparent to him that local facilities and care were inadequate for the hundreds of children dealing with congenital heart disease. He took action and with the help of local leadership, raised money to build a new local heart institute. Over the course of 20 trips, Penny trained more than 100 local physicians, nurses and other medical staff. As a result of his efforts, the center performed more than 700 open heart surgeries in 2009, mainly in children, as well as 900 cardiac catheterizations, all done by Vietnamese doctors and staff. Prior to Penny’s efforts, 100 surgeries and 200 cardiac catheterizations were done by visiting physicians.

Dr. Hugh Allen, pediatric cardiologist at Texas Children’s and professor of pediatrics-cardiology at Baylor, nominated Penny for this award and notes the enormous impact his work in cardiac research, in the clinical area and with the larger international community will have on pediatric patients for generations to come.

March 1, 2016

3216FraserReunioninside640On a recent Monday afternoon, identical 21-year-old twins Karly and Kestly Tinklepaugh met the man they consider their hero – Texas Children’s Surgeon-in-Chief Dr. Charles D. Fraser Jr.

“We want to thank you from the bottom of our hearts for giving us a life that is as normal and healthy as possible,” Karly and Kestly said in an emotional reunion. “You are one wonderful individual.”

Two decades ago, when Karly and Kestly were just 2-years-old, Fraser performed corrective surgery on the girls, who were born with Tetralogy of Fallot, a rare and complex heart defect that is treated most successfully with open-heart surgery soon after birth.

Since their surgery, Karly and Kestly have grown up to be normal, healthy young adults. Both of them attend Lone Star College with Kestly studying to become a geologist and Karly planning on being part of the Texas Children’s team one day as an echocardiogram technician.

Over the years, the twins, who are patients with our Adult Congenital Heart Disease Program, have often thought of their hearts and Fraser, the man they believe saved their lives. The desire to meet the pediatric heart surgeon grew and led to a late-night email penned by the twins asking Fraser if he would be interested in meeting them.

To Karly and Kestly’s surprise, Fraser responded to their note saying he remembered them quite well and would be more than happy to arrange a meeting. Before the twins knew it, they were standing nervously on the 20th floor of West Tower waiting to shake the hand of the man who last saw them on an operating table. When Fraser arrived, hugs were exchanged and conversation about everything from heart surgery to college and grandchildren ensued.

“We are elated that we got to meet Dr. Fraser,” Karly and Kestly said. “We will forever be grateful to him and Texas Children’s.”

Fraser said he too enjoyed the visit and is grateful the Tinklepaugh’s reached out to him.

“Periodically, I’ve pondered where they were and what life had brought them,” he said. “Now, I know.”

To learn more about the Tinklepaugh’s reunion with Fraser and the twins’ heart condition, click here to watch ABC-13’s coverage of the event. To read a blog post written by the Tinklepaugh’s themselves, click here.

bench-and-beside-Header2 Bench and Bedside is a digest of the previous month’s stories about the clinical and academic activities of our physicians and scientists. We welcome your submissions and feedback.

February 2

Texas Children’s, Rice University team up to develop new way to repair birth defect

Bioengineers at Texas Children’s Hospital and Rice University have won a National Institutes of Health grant to develop a new generation of patches to repair the damaged hearts of infants. The $1.9 million, 5-year grant will allow Jeffrey Jacot and his team to take the next steps in a long-running drive to improve the survival rates of such infants, many of whom are diagnosed in utero and require surgery soon after birth.

February 2

Department of State Health Services to award Texas Children’s $1 million grant for SIU 3116SIUTraining300

Texas Children’s is set to receive a $1 million grant from the Texas Department of State Health Services (DSHS) to put toward its newly constructed Special Isolation Unit at Texas Children’s Hospital West Campus. The funds, to be delivered during the next five years, will specifically go toward Ebola preparedness activities that bolster employee safety and quality of care.

February 2

Texas Children’s convenes task force, urges employees to educate themselves on Zika

3116zikamosquito300In light of the multiple confirmed cases of Zika infection in Texas due to foreign travel, Texas Children’s leaders encourage employees, particularly pregnant women, to refrain from traveling to areas where the outbreak is growing and to follow precautionary measures to protect themselves from Zika exposure. Since the mosquito-carrying virus has been known to increase the risk of microcephaly, a neurological fetal birth defect, Texas Children’s recently convened a task force to develop management and research strategies based on screening criteria outlined by the Centers for Disease Control for pregnant women who may have been exposed to the Zika virus.

February 2 Kline: Children deserve access to best care

Many patients have been left scrambling to find a new medical home when a number of insurance companies decided not to provide in-network coverage for many hospitals in the Texas Medical Center, including Texas Children’s Hospital. Physician-in-Chief Dr. Mark W. Kline talks about how all children deserve access to the best care.

February 2

Zoghbi to receive medal for pioneering advancements in neuroscience research

3116zoghbilab300Dr. Huda Zoghbi, director of the Jan and Dan Duncan Neurological Research Institute at Texas Children’s, will receive the 2016 Jessie Stevenson Kovalenko Medal from the National Academy of Science in April for her achievements in neuroscience, which includes unlocking the genetic and molecular mysteries behind rare neurological disorders.

 

February 2

Clinical Research Center presents research award to Dr. Anvari

The Clinical Research Center will present the Clinical Research Award for First Quarter 2016 to Dr. Sara Anvari, physician, Allergy and Immunology. Dr. Anvari is a dedicated clinical scientist for the food allergy research trials at Texas Children’s Hospital.

February 9

Three NRI researchers recognized for their contributions to neuroscience research

Drs. Michael Wangler and Shinya Yamamoto recently obtained a research grant from the Simon’s Foundation for Autism Research Initiative (SFARI) to advance their study on autism spectrum disorders. Their study titled, “In vivo functional analysis of autism candidate genes” is one of five projects selected for research funding by the SFARI. Dr. Andrea Ballabio, founder and director of the Telethon Institute of Genetics and Medicine (TIGEM), Italy, professor at Baylor and faculty member at the NRI, has been selected to receive the 2016 Louis-Jeantet Prize for Medicine. He will share this award with biochemist John Diffley, associate research director at the Francis Crick Institute, United Kingdom.

February 16

Study finds premature infants benefit from exclusive human milk-based diet

3116NEC300A recent Baylor College of Medicine study led by Texas Children’s neonatologist Dr. Amy Hair, and published in the journal Breastfeeding Medicine, found that premature infants weighing less than 1,250 grams at birth showed improved outcomes after being fed a human milk-based diet.

 

 

 

February 16

Mata twins celebrate one-year anniversary after historic separation 3116MataFamily300

A year after being separated in a marathon surgery at Texas Children’s Hospital, formerly conjoined twins Knatalye and Adeline Mata are healthy, lively toddlers. Several members of our medical staff involved in the girls’ care got to see how much they have grown and how far they have come during a recent visit to Texas Children’s for their follow-up appointments with pediatric subspecialists monitoring their health and development. Hear some of their reactions and see for yourself how much the girls have progressed.

February 16

Heart Center launches series of educational animated videos 3116animation300

Featuring an armadillo, a bison and robot-like caregivers called Blings, a series of animated videos created by Texas Children’s Heart Center aims to help educate patients and their families about various heart conditions and treatment options. Six of the videos were unveiled at a February 15 red carpet premier and can be accessed on the Texas Children’s website at http://www.texaschildrens.org/hearteducation.

February 23

CVICU physician performs CPR, saves man’s life during spin class

When Dr. Natasha Afonso clipped in to a bike for a spin class on a recent Thursday evening, she didn’t know the skills she uses each day to treat patients in the CVICU would mean the difference between life and death for a fellow rider. Toward the end of the 45-minute, high-intensity class, Afonso heard 50-year-old Scott Corron collapse and fall off his bicycle. Because he wasn’t breathing and had no pulse, Afonso immediately started CPR, an action that ultimately saved Corron’s life.

February 23

New in situ simulation program enhances role clarity in high-risk emergencies 3116sitasim300

Texas Children’s Simulation Center recently launched the first-ever Neonatal Comprehensive In Situ Simulation Program for NICU providers at the Pavilion for Women. The program focuses on improving crisis resource management skills, one of which is role clarity, to ensure all code team members know each other’s specific roles when delivering care to patients during high-risk medical emergencies.

February 23

Texas Children’s helps develop nation’s first hospital-based rapid test for the Zika virus

3116zikalab300Pathologists and clinical laboratory scientists at Texas Children’s Hospital and Houston Methodist Hospital developed the nation’s first hospital-based rapid test for the Zika virus in a matter of weeks as part of the L.E. and Virginia Simmons Collaborative in Virus Detection and Surveillance. Pathologist-in-Chief Dr. James Versalovic and Dr. James Dunn, director of medical microbiology and virology, led Texas Children’s Zika test development team. The new diagnostic test identifies virus-specific RNA sequences to detect the virus and can distinguish Zika virus from other virus infections like Dengue, West Nile or Chikunguny.

February 23

Blaney receives Pioneer Award for contributions in pediatric neuro-oncology The Children’s Brain Tumor Foundation honored Dr. Susan Blaney with the Pioneer Award for Pediatric Neuro-Oncology, celebrating her 25 years of dedication to the search for new and better treatments for children with brain and spinal cord tumors. Blaney’s extensive experience in clinical translational research focuses on developing new treatment strategies for children with brain tumors and other refractory cancers. Blaney has been instrumental in developing more new agent clinical trials than anyone in the field of pediatric oncology.

February 23

Dietrich voted president-elect of North American Society for Pediatric and Adolescent Gynecology

Chief of Pediatric and Adolescent Gynecology Dr. Jennifer Dietrich has been voted president-elect of the North American Society for Pediatric and Adolescent Gynecology. Her tenure as president-elect begins in April. She will be voted in as president in April 2017.

February 23

Texas Children’s Health Plan Center for Children and Women earns accolades for CenteringPregnancy® program Texas Children’s Health Plan’s Center for Children and Women has earned site approval for its CenteringPregnancy® program. The Centering Healthcare Institute (CHI) has awarded both the Southwest and Greenspoint locations the official designation for closely following the CenteringPregnancy® model.

February 23, 2016

22416lifesaving640When Dr. Natasha Afonso clipped in to a bike for a spin class on a recent Thursday evening, she didn’t know the skills she uses each day to treat patients in the CVICU would mean the difference between life and death for a fellow rider. Toward the end of the 45-minute, high-intensity class, Afonso heard commotion behind her as riders were being ushered out of the room. When she turned around she saw 50-year-old Scott Corron lying motionless on the ground.

She jumped off her bike and found Corron cold, clammy and pulseless. Because she didn’t see him fall, she thought he may be dehydrated, but because he wasn’t breathing Afonso immediately started CPR.

“It’s surprising to see someone go into cardiac arrest outside of the hospital setting,” said Afonso. “I didn’t have time to get my own heart rate down much less think about what caused Scott to stop breathing, so I started compressions.”

When the paramedics arrived 15 minutes after Afonso started CPR, she assisted with quickly placing the electrode pads on him. The paramedics shocked Corron before resuming compressions and he was fairly alert as the ambulance whisked him off to the hospital.

Corron, who has ironically worked in cardiology device sales for more than 20 years, credited Afonso’s quick thinking and action which has led to a full recovery.

“Words aren’t enough to thank Dr. Afonso for saving my life,” said Corron. “I hope to be back on the bike soon and am so thankful she decided to take a spin class that night.”

To see the reunion between Afonso and Corron, watch this recent NBC 2 KPRC story.

February 16, 2016

A year ago, Knatalye and Adeline Mata lay on an operating table at Texas Children’s Hospital conjoined from the chest to the pelvis. For the next 26 hours, a team of surgeons and support staff separated the girls in an historic and intricate procedure meticulously choreographed to ensure that each step of the process would lead to and support the steps to come. Throughout the procedure, the Mata family stood by, waiting and praying for good news.

Just before 10 a.m. on February 18, 2015 the family counted their prayers as answered when they saw their girls, apart for the first time in adjacent rooms in the Pediatric Intensive Care Unit, where they were cared for by a team of specialized nurses. Since then, the almost 2-year-old twins have been discharged from the hospital and are living relatively normal lives in Littlefield, Texas with their parents Elysse and John Eric, 6-year-old brother Azariah and 5-month-old sister, Mia.

“The girls are both doing awesome,” said Dr. Darrell Cass, one of the lead surgeons in the separation case. “Neither have experienced any complications and both are making steady progress.”

Knatalye is beginning to walk, talk and eat by mouth. Adeline is meeting milestones as well. Her lungs are continuing to improve and she is slowly being weaned from ventilator support. Both girls are still undergoing physical and occupational therapy.

Several members of the medical staff involved in the girl’s care got to see how much Adeline and Knatalye have grown and how far they’ve come during a recent visit the Mata family made to Texas Children’s for follow-up appointments with pediatric subspecialists monitoring the twins’ health and development.

Aimee Renaudin, one of Adeline and Knatalye’s primary nurses in the Neonatal Intensive Care Unit, said she is amazed that the girls are doing so well.

“You would never know how they started off their lives together,” she said. “Elysee and Eric have taken such good care of them.”

Dr. Oluyinka Olutoye, the other lead surgeon in the separation case, said it’s a blessing to see how far Adeline and Knatalye have come.

“It’s always a joy to see the changes that have gone on,” he said. “They’ve gone from just being little babies to now trying to walk and talk and interact with you.”

John Eric said his daughters have far exceeded his expectations and that he and Elysee are enjoying being able to care for the girls at home.

“It’s nice to be able to have all of us together and to be able to wake up and know that they’re there,” Elysee said. “It’s fun to be able to be mom and dad, which we didn’t get to do for the first 10 months of their lives.”

The Mata family will return to Texas Children’s this summer for a checkup. During that visit, surgeons will operate on Knatalye, removing the metal struts used to stabilize her rib cage and to close her chest wall.

To read more about their journey click here. See photos from the Mata family’s latest visit to Texas Children’s below.