Two recent radiothons held in conjunction with local radio stations raised more than a million dollars for Texas Children’s Hospital.
On December 6 and 7, Mega 101 FM raised more than $392,000 for Texas Children’s Hospital through its annual holiday Radiothon. As the leading Spanish contemporary FM station, Mega 101 is an exemplary partner that represents giving back to the children and families in the community whenever there is a need by their listeners.
Days later on December 13 and 14, the 15th Annual Cox Cares For Kids Radiothon brought in more than $625,000 for Texas Children’s Hospital. For two days, radio personalities from The New 93Q, Country Legends and The Eagle interviewed children and families who shared their stories of being treated at Texas Children’s.
Donations were raised through pledges called into a phone bank, as well as those made online through a text-to-donate campaign. The event was broadcast live from Texas Children’s in the third floor common area of the Pavilion For Women.
Experts from across the country recently convened for the fourth Symposium on Coronary Artery Anomalies, hosted by Texas Children’s Heart Center®.
The event was founded by leaders of Texas Children’s groundbreaking Coronary Anomalies Program – the first of its kind in the nation – as a way for caregivers, researchers and others to gather and discuss the diagnosis and management of patients with coronary artery anomalies, such as anomalous aortic origin of coronary artery (AAOCA), which can lead to the phenomenon known as sudden cardiac death (SCD), which usually occurs in young athletes.
“Before we began to really focus on these conditions, there was very little data about the potential risks or causes, which in turn led to controversy surrounding the proper ways to evaluate, treat and monitor children with these conditions,” said Texas Children’s cardiologist Dr. Silvana Molossi. “This event provides an open, dedicated forum for discussion and information sharing, and has become a valuable resource for experts nationwide who are involved in the diagnosis and care of patients with these rare conditions.”
The event featured comprehensive presentations by members of Texas Children’s Coronary Anomalies Program, as well as 11 visiting faculty from some of the country’s preeminent pediatric health care institutions, including Boston Children’s, CHOP, Stanford University, Columbia University, UT Southwestern, and the Heart & Vascular Institute at Hartford Hospital in Connecticut. Major topics included AAOCA, Kawasaki disease and myocardial bridges.
An addition to this year’s conference was a special Patients & Families Symposium.
“We were astounded by the response to the family symposium before it even started,” said Molossi. “We expected between 25 and 30 people to register – we ended up having nearly 80 in attendance.”
During this day-long event, parents and children attended talks that addressed topics such as the impact of coronary anomalies on families and the importance of counseling and shared decision-making when determining a plan of care. And in a session titled, “This is My Story: Patients and Families Living with AAOCA,” visitors had an opportunity to hear from Texas Children’s patients and families who have had similar experiences of unknowingly living with these life-threatening conditions, receiving crucial diagnoses and making the tough decisions that follow, undergoing open-heart surgery, and living a normal life in the aftermath. This emotional and powerful session was followed by discussions about the importance of networking and building a sense of community and collective support for people affected by coronary anomalies.
About the Coronary Anomalies Program at Texas Children’s
Seeing the need for more complete data and a more specialized approach to care, experts at Texas Children’s formed the Coronary Anomalies Program. The multidisciplinary core team of cardiologists, congenital heart surgeons, radiologists and researchers works together to provide the best treatment for patients with congenital coronary anomalies, study outcomes, and educate health care providers and the public about these conditions.
A cornerstone of this team’s approach is the development and use of a clinical algorithm to facilitate the diagnosis and management of these patients. The team presents cases in monthly multidisciplinary meetings to determine the best course of action for each patient, and then tracks the patients’ outcomes over time.
For Lauren Meredith and her family, this holiday season has been a time of joy and gratefulness after the care and expertise they received from the experts in Texas Children’s Colorectal and Pelvic Health Program. It stands in sharp contrast to the nightmare she and husband, Ryan, experienced a year ago when their third child, Ava, was born with a rare congenital disorder of the colon that doctors thought would make her unable to pass stool. With sparse information and little time to weigh their options, the anxious parents had to make the quick decision to have Ava transported to a hospital in the Texas Medical Center for surgery – a colostomy – which she underwent at just 12 hours old.
Unfortunately, their long, hard journey was only beginning.
“We were sent home with relatively little information on how to properly care for her,” Meredith said. “I was making 10 to 15 calls a day to the doctor’s office, the insurance company and the medical supply company, but no one was helping. We felt completely alone and unprepared to tackle this complex medical issue.”
At a breaking point, Lauren began a search for help and answers online, where she first read about Texas Children’s Colorectal and Pelvic Health Program. On Christmas Eve 2017, she sent an email to Dr. Timothy Lee, pediatric surgeon and program director, explaining their ordeal.
The next day, the Merediths got their own holiday miracle.
“Dr. Lee emailed me back – on Christmas Day – and three days later we had our first appointment,” Meredith said. “The care, from the minute we walked in, was like stepping into a different world. The communication was incredible. I really felt like I was being heard for the first time.”
In August 2018, the colorectal and pelvic health team performed an operation to repair Ava’s initial defect and assess her gynecologic anatomy. And this past November, Ava had her colostomy reversal. Her prognosis is excellent.
Today, Ava – who turned one year old on December 13 – is a happy, healthy little girl who loves when her older brothers, Jackson and Greyson, sing to her and build forts for her to play in. She loves to snack, especially tacos. And she loves cuddles with her dad when he gets home from work.
“The team at Texas Children’s has given us so much to be thankful for,” Meredith said. “They took the burden off us and made us feel like they were on our side. We could tell from the very beginning that the entire Colorectal and Pelvic Health Program cared about Ava and wanted the best outcome.”
The full spectrum of care
A child’s diagnosis with a congenital disorder of the colorectal and urogenital system can be a heartbreaking and trying ordeal for families. Since these conditions are rare and often complex – and because no two cases are exactly alike – some institutions may lack the expertise necessary to provide effective treatment.
Fortunately, a highly skilled, multidisciplinary team of specialists at Texas Children’s Hospital offers patients and families the full spectrum of care for these disorders in our Colorectal and Pelvic Health Program.
The Colorectal and Pelvic Health Program comprises four different specialties – pediatric surgery, pediatric urology, pediatric and adolescent gynecology, and gastroenterology – and provides treatment for several disorders and developmental anomalies, including imperforate anus, hirschsprung’s disease, cloacal malformation, cloacal exstrophy, and severe idiopathic constipation.
Regardless of the disorder, the team works together to develop a customized approach to care for these complex, and often sensitive, medical issues.
“Many of these conditions can have an extreme negative impact on the self-esteem of a child,” said Dr. Paul Austin, director of Texas Children’s Complex Urologic Reconstruction Program. “Knowing that we can make a positive difference through the care that we provide is extremely rewarding.”
Specialists collaborate to identify the patient’s specific issues and determine the best path to a positive outcome and improved quality of life, whether through surgery, medication or some combination of treatments. Additionally, the team has focused on improving patient care through clinical research and development of best practice pathways to standardize and streamline clinical care for this complex patient population.
“This hallmark of the program is providing multi-disciplinary collaborative care,” said Lee, pediatric surgeon and program director. “Even though these conditions aren’t common, we’ve seen more and more of them at Texas Children’s as our patient volume has grown. Parents can be confident when they come to us that they will be receiving truly comprehensive, collaborative care delivered by experts who have been treating these kinds of patients for years.”
Standing in a packed auditorium at the University of Houston’s Student Center South on the evening of December 9, Natalie Martinez gripped a white candle and whispered Angelina when the person seated next to her lit her wick. Angelina is Natalie’s 11-month-old daughter who died five years ago of an undiagnosed medical condition.
“I have been looking for a way to formally honor my little girl and this is it,” Natalie said. “I had to bring a friend for support because I might break down, but I’m here and I’m thankful to have such an opportunity.”
Natalie was one of about 700 people who attended Texas Children’s First Annual Candle Lighting Ceremony to remember, honor, mourn and celebrate the lives of children taken from this world too soon. Hosted by Texas Children’s Palliative Care Team (PACT), the first annual Candle Lighting Ceremony was held in conjunction with the Compassionate Friends Worldwide Candle Lighting Day, which unites family and friends around the globe in lighting candles for one hour at 7 p.m. on December 9 in memory of children who have passed away. All families whose children died and were patients at Texas Children’s Hospital were invited to attend the ceremony, which included free parking, refreshments, childcare and access to grief resources.
Dr. Tammy Kang, section chief of Palliative Care at Texas Children’s, and Jackie Ward, associate chief nursing officer, kicked off the ceremony with words of encouragement and hope.
“Together we come together in unity to honor those lost,” Ward said. “We will forever remember them, cherish them and their imprint on this world.”
Kang agreed and said she hoped the ceremony would provide a healthy outlet of remembrance for families grieving the loss of their child, and to begin to heal from the pain and sadness they are going through.
A slide show of those lost brought many people to tears, giving faces and names to those who have died, as did a display of paper hearts hung on trees at the front of the auditorium. Attendees were given the option to write a message to their child on the hearts. Natalie’s heart read: Some people dream of angels. I’ve held one in my arms.
During the ceremony, five candles were lit at the front of the room – one for grief, another for courage and the rest for memories, love and hope. Then, the candles of everyone in the audience were lit as music therapists Alix Brickley and Abi Carlton sang This Little Light of Mine.
“Take a deep breath,” Chaplain James Denham said soothingly. “You are not alone.”
Melissa Lopez, a nurse in the Cancer Center, was both a volunteer and an event participant as her 16-year-old daughter, Natalia, passed away nine years ago after fighting her battle against cancer.
“Texas Children’s needed this type of event,” she said. “People like me need to know and feel like our children have not been forgotten.”
Taryn Schuelke, the grief and bereavement specialist with the Palliative Care team and ceremony chair, said she is pleased so many people attended the first of what will be an annual ceremony for those tied to Texas Children’s who have lost a child.
“We are honored to have known these children and to be able to recognize them,” she said. “We also are thankful to have so many people who are willing to help make such a special remembrance happen.”
Some of those people and organizations include:
The Aleksandra Petra Mondlak Palliative Care Endowed Fund
Texas Medical Center Orchestra
Texas Children’s Hospital Language Services
Texas Children’s Art Therapist Ashley Wood created the art used on all ceremony branding and will turn the paper hearts into a display for next year’s ceremony.
The Palliative Care Team’s Senior Administrative Assistant Lindsey Gurganious built the ceremony mantle and poured the large ceremony candle.
Texas Children’s Spiritual Care Department
Texas Children’s music therapists
More than 100 Texas Children’s Hospital staff and their families
Various local restaurants and florists
The Pediatric Advanced Care Team (PACT) is an interdisciplinary team comprised of attending physicians, physicians in training, advanced practice nurses, a nurse, chaplain, social worker, grief and bereavement specialist, research coordinator and administrators who work together to provide excellent palliative care to patients and their families across the Texas Children’s Institution.
The team is available 24 hours a day, 365 days a year to provide care in either the inpatient or outpatient setting in partnership with other health care providers. The team also supports staff. Just last year, the program earned The Joint Commission’s Gold Seal of Approval for Palliative Care Certification, making Texas Children’s Palliative Care Program the first of its kind in Houston and one of only 90 across the United States to receive such a distinction. To learn more about the team, click here.
Santa Claus made his way to Texas Children’s Newborn Center last week to spread some holiday cheer – but he wasn’t the only one dressed up in red. Babies in the NICU at Texas Children’s Hospital Pavilion for Women and West Tower were dressed in their own tiny Santa hats and booties.
Vincent Michael Garza, born on December 6, was dressed in a green and white striped holiday-themed onsie when Santa walked in bellowing a spirited Ho, Ho, Ho! The days old infant gave Santa a quick newborn smile and then went peacefully back to sleep.
“I love this,” said Santa Claus, who has a personal connection to Texas Children’s – his own grandson spent over 100 days in the NICU when he was born. “It makes my day.”
Vincent’s mother, Norma Garza, said Santa’s visit meant so much to her, giving her a sense of joy, relief and normalcy during what was a longer stay at the hospital than expected.
“Everyone here has been so great,” she said. “Having Santa come by made it even better.”
Vincent and Norma got an equally as good surprise later that day – clearance from Vincent’s doctor to go home! The infant was discharged on December 12, just in time to spend the holidays at home with his family.
Stephanie Jones, a Texas Children’s employee, delivered her son, Levi, on October 8. He has been in the NICU at the Pavilion for Women ever since and might not be discharged by the end of the month. So, having Santa personally visit the infant was super special.
“Being here in general is hard,” Jones said. “A surprise visit like this helps bring peace of mind and a little bit of normalcy to our day.”
The visit from Santa was hosted by the hospital’s Newborn Center Family Advisory Committee and First Memories Texas, a volunteer group that helps families with babies in the NICU and CVICU at Texas Children’s to make memories and tell their children’s stories through photography.
On December 10, Texas Children’s Nursing Retention Council pitched in to give back to the community by volunteering at the “Be a Resource for CPS Kids (BEAR) annual toy drive.
Team members spent several hours sorting and preparing Christmas gifts for distribution to the 9,925 children in the Houston area who are in the Child Protective Services (CPS) system.
Like many Texas Children’s employees who have dedicated their time to volunteer service, identifying opportunities to make a positive impact in the community is a win-win situation. Accustomed to caring for others, supporting BEAR provided an opportunity for our nurses to extend their reach and care for thousands of foster children across Greater Houston.
“I am excited about the ways our team is serving our community,” said Texas Children’s Chief Nursing Officer Mary Jo Andre. “Volunteering makes us feel good, brings us together and further strengthens our team. The work of BEAR closely aligns with Texas Children’s mission of serving children, and I can’t think of a better organization for us to support.”
Besides their annual holiday toy drive, BEAR provides emergency supplies – like diapers, clothing, shoes, car seats, cribs and school supplies – to Harris County children in the care of CPS. The program also provides items needed for youth who are transitioning out of CPS care.
“BEARing Gifts was such a powerful experience for me, and it made me realize just how dire the situation is for children in our community,” said Nursing Retention Council Chair Sharon Moreau. “As Retention Chair, I will work to cultivate a lasting relationship with BEAResource.”
Music is not only food for the soul, but also medicine for the body when it comes to health institutions like Texas Children’s. George Robinson, the grandson of Lillie and Jim Abercrombie, has partnered with Michael Clay, Executive Director and Co-Founder of Texas Music Project, to donate a $75,000 gift from the George A. Robinson IV Foundation.
It all started when Clay realized his family ties with the Abercrombies. They were Texas Children’s first major benefactors, whose kindness and foresight helped create our nationally recognized hospital. With this in mind, he knew that reaching out to his family, whose history runs deep in the organization, would lead to a great partnership with his company. Texas Music Project is a program for students, schools, and communities, which partners with musicians to help guide students down their own unique musical paths.
“We’re a grassroots resource for the community and kids for music,” Clay said. “I’ve learned that music therapy crosses over from not just schools, but into hospitals as well.”
The money donated goes to the Child Life department’s music therapy program, to upgrade media technology. Music Therapy, Child Life Media Producer, Bio Med, IT and the Facilities Planning teams have all been working with the Texas Music Project for the past year to bring George’s vision to fruition. The upgrade includes new audio systems, lighting systems for the broadcast, and most importantly, portable capabilities.
The idea was to upgrade the audio system in a way that could be taken anywhere in the hospital. Along with the main system located in the Zone, the Child Life entertainment center for patients, there is a mobile studio that allows for an efficient assembly process so that video can be streamed lived from room-to-room, if necessary.
The last portion of this partnership consists of producing a regular concert for patients called Rockin’ Robinson. This will include different musicians performing live for patients, to entertain them and lift their spirits. With the portable technology upgrade, these shows can be produced regularly and live streamed on ZTV, an internal television channel, for patients who are not able to leave their room.
“I am really grateful for the Robinson’s gift towards the technology upgrade,” Child Life Media Producer, Ashby Gleditsch said. “I am excited about what we will be able to accomplish in the future with live programming.”
On December 12, Robinson and his daughter Blair Robinson, along with Clay and the Texas Music Project team came to the hospital to shoot the pilot of Rockin’ Robinson. Dozens of patients, their families, and employees gathered in The Zone, for a concert as Blair sang and played the acoustic guitar with her band.
Music therapy is a very important component when it comes to an individual’s recovery process, especially with children. This gift will not only ingrain a new activity into the Child Life program, but also ensure smiles on patient’s faces and music in their hearts.
“I’m so excited about putting these shows in the rooms for the kids to see,” Robinson said. “My goal is to get this into all of the Texas Children’s campuses so that we can reach as many children as possible with a few songs.”