July 9, 2019

Dozens of patients and their families recently attended the 2nd Annual Complex Care Clinic Resource Fair, held at Texas Children’s Meyer Building. The event is one of several the clinic hosts throughout the year in an effort to build a community for families with children who have ongoing complex care needs.

“Medically complex children are the sun around which their entire family orbits, and it can be frustrating to see how alone and isolated these families feel,” said Amanda Harris, a medical social worker at the clinic and one of the event’s organizers. “Aside from providing helpful resources, we wanted to create an opportunity to just let these families – including siblings and grandparents – be around other people who are facing similar situations and to see that there are other people just like them.”

There were activities, such as face-painting, and canvases were set up for families and patients to create original artwork for display in the clinic. Children also had an opportunity to pet and interact with ponies that were provided by SIRE (Self-improvement through Riding Education), a local occupational therapy group that specializes in equine therapy.

There were numerous community partners present, including a school advocacy group to answer parents’ questions and offer advice on how to make requests for special accommodations at school, as well as the Deaf-Blind Multihandicapped Association of Texas, a group that advocates and intervenes for patients with co-occurring symptoms to help improve their quality of life.

Families also had access to internal resources, such as Texas Children’s Medical-Legal Partnership, a collaboration between Texas Children’s Hospital and Houston Volunteer Lawyers that provides low-income patient families with free legal advice and representation. There were also representatives present from Texas Children’s Autism Center and Developmental Pediatrics to talk about resources and services available, as there is often overlap between these patient populations.

About Texas Children’s Complex Care Clinic

The dedicated team of experts in the Complex Care Clinic provides comprehensive, high-quality care for nearly 1,200 of Texas Children’s most medically complex patients. These patients include:

  • Former premature infants
  • Children with complex seizure disorders
  • Patients with technology needs, such as tracheostomies or gastrostomy tubes
  • Congenital heart disease patients
  • Patients suffering from rare genetic or neuromuscular disorders

“There are so many wonderful stories people hear about the miracles that happen every day in our pediatric or neonatal intensive care units, but a lot of people might not realize those stories don’t always end when the patient is discharged,” said Dr. Heather Moore, clinic chief. “For the patients we see, that’s just the beginning of the journey, and they’re going to need ongoing, highly coordinated care.”

The clinic – located at the Texas Medical Center campus and West Campus – is a true one-stop shop for patients and families, functioning as the primary care physician (PCP) office for well visits and touch point visits for proactive preventive care. The clinic also provides all urgent care needs. In an effort to reduce emergency room visits and hospitalizations among this vulnerable population, experts are available to assist families 24/7, and calls go directly to an on-call physician or nurse practitioner.

The full team includes:

  • Four physician PCPs and three nurse practitioner PCPs
  • Two masters-level medical social workers who remove barriers around transportation needs, housing, food insecurity, guardianship issues, transitioning to adult care, as well as providing assistance in instances of child or domestic abuse
  • Masters-level clinical dietitians embedded within the clinic who manage tube feeding regimens and oral feeding diets, while also assisting clinic providers to ensure access for patients who need enteral supplies and feeding therapies
  • Four clinical nurses, who triage patients for medical needs via triage line, change gastrostomy tubes and place nasogastric tubes, administer immunizations, suction and escort to the Emergency Center if necessary
  • A child and adolescent psychiatrist, providing both behavioral health and family therapy
  • A care coordination team comprising six nursing coordinators and six patient navigators (an administrative support role) that interfaces with specialists, therapists, insurance carriers, and medical supply and home nursing companies, and others to help streamline care and remove gaps or redundancies

There are plans to add new staff in the near future, including additional PCPs, a dedicated hospitalist and Physical Medicine and Rehabilitation doctors. A planned expansion to The Woodlands is also in the preliminary phases.

“Many of our patients have special transport needs and it takes a tremendous amount of effort to get around,” said Moore. “We’re trying to provide everything our families need in one place that’s closer to home, while also reducing any gaps in care. Our goal is to provide the most comprehensive care available and to make life easier for them.”

In recognition of Patient Care Assistants (PCA) Week, Veronica Campos shares her thoughts on Sharonda Brown, who she recently nominated for an award for her above and beyond efforts. Read more

This month’s installment of Medically Speaking features Texas Children’s orthopedic surgeon, Dr. John Heydemann, discussing the rising prevalence of obesity in American adolescents and the increased level of difficulty it creates in the treatment of pediatric orthopedic injuries or deformities.

To clearly relate the two, he highlights four specific treatment areas or conditions that are often exacerbated by, or that can contribute to, obesity. These are:

  • Trauma, including increased fracture rates, higher risk of loss of reduction and increased risk of complications
  • Blount’s disease, a growth disorder of the shin bone that causes the lower leg to be angled inward
  • Slipped capital femoral epiphysis, a hip condition that occurs in adolescents and teens
  • Back pain, potentially due to children leading more sedentary lifestyles

Learn more about the services provided and conditions treated by Texas Children’s Division of Orthopedics.

Fighting obesity at Texas Children’s

In addition to contributing to or complicating the treatment of orthopedic injuries, obesity drives significant health outcomes in Texas Children’s patients. Obesity is one of the biggest drivers of preventable chronic diseases and in childhood can lead to high blood pressure and cholesterol, increased risk of type 2 diabetes, asthma and sleep apnea, and joint problems, not to mention the associated psychological ramifications, such as anxiety and depression.

But obesity it a health problem Texas Children’s Hospital is attacking head on.

This year, Texas Children’s included a system-wide BMI goal as part of our Fiscal Year 2019 care quality objectives. The target was to record BMI for 85 percent of the patient population, ages 2 to 19. In addition to recording BMI, an additional target was set to refer or implement counseling and/or education for more than 40 percent of patients with BMI greater than the 85th percentile.

So far this year, Texas Children’s is exceeding those goals. Through March 2019, we’d recorded BMI for more than 87 percent of our patients, and more than 73 percent of those with BMI in the 85th percentile or higher have been referred to or received the resources they need to combat obesity.

About Medically Speaking

Medically Speaking, a video series from Texas Children’s Service Line Marketing, features some of the brightest minds from several Texas Children’s specialty and subspecialty areas. The series is meant to be a helpful educational resource for parents and a convenient way for physicians and other caregivers to stay up-to-date on the latest in pediatric medicine. Viewers can watch talks on a variety of interesting topics, including advancements in surgery, breakthroughs in research, new clinical trials, and novel and back-practice treatments for specific conditions.

Don’t miss future Medically Speaking episodes featured here on Connect, or view additional episodes now.

PLEASE NOTE:
This presentation is not intended to present medical advice or individual treatment recommendations, and does not supplant the practitioner’s independent clinical judgment. Practitioners are advised to consider the management of each patient in view of the clinical information. All content is shared for informational purposes only, and reflects the thoughts and opinions of the original author. No physician-patient relationship is being created by the use of this presentation. The presentation sets out recommendations based upon similar circumstances and is provided as an educational tool. The presenters are not attorneys, and to the extent this presentation provides commentary on current laws and regulations affecting health care activities, it is not intended as legal advice.

Texas Children’s West Campus Urgent Care opened its doors in September 2018 and has served many patients since. Located next to Texas Children’s Hospital West Campus, the West Campus Urgent Care opened to help manage the Emergency Center to serve patients and families in the west Houston area. Learn more by visiting our 2018 virtual Annual Report.

The First Lady of Botswana, Neo Jane Masisi, was recently announced as an inaugural member of the Global HOPE International Council. The International Council which will comprise African leaders and dignitaries, noteworthy global health care leaders, philanthropists and other key influencers, will serve as advocates for Global HOPE to raise awareness for the program and the plight of children with cancer in Africa.

Masisi is an accountant by profession and has held various portfolios in Botswana within the private sector. She further embarked on a career as an International Civil Servant where she served the United Nations in USA, Ethiopia and Central African Republic. Masisi has extensive experience in management and budgetary controls, grants management and financial reporting. She is a member of the Chartered Institute of Management Accountants (CIMA – UK) and holds an MBA.

Currently, as First Lady, Masisi is involved in national issues geared at addressing HIV/AIDS. She is passionate about girls and rural women, causes that she pursues in her personal capacity. Having worked in both Botswana and the international arena, Mrs. Masisi brings across a “global view’’ approach to issues that affect humanity.

Global HOPE (Hematology-Oncology Pediatric Excellence), recently celebrated its two-year anniversary. It is a transformative initiative focused on creating an innovative pediatric hematology-oncology treatment network in sub-Saharan Africa that will build long-term capacity to treat and dramatically improve the prognosis of thousands of children with cancer and blood disorders. The program was created in partnership with Texas Children’s Cancer and Hematology Centers, the Bristol-Myers Squibb Foundation and Baylor College of Medicine International Pediatrics AIDS Initiative at Texas Children’s Hospital (BIPAI).

Global HOPE works closely with Ministries of Health in its three initial countries of focus including Botswana, Malawi and Uganda. Within two short years, the program has seen extraordinary progress, including treating more than 3,000 patients, training over 1,000 health care professionals, and graduating its first class of physician fellows from the Global HOPE Pediatric Hematology Oncology Fellowship Program, the first of its kind in East Africa.

While Global HOPE initiative is relatively new, the relationship with these countries in Sub-Saharan Africa goes back nearly 20 years with the implementation of Baylor International Pediatric AIDS Initiative (BIPAI), the largest pediatric HIV treatment network in the world, leveraging existing experience, infrastructure and public/private partnerships created through the initiative. To date, BIPAI has provided care and support to more than 1 million HIV-infected children and adolescents, and has trained more than 52,000 health care workers on issues of pediatric HIV. Building on this experience, Global HOPE is using this approach to address childhood cancer.

In the U.S., where there are 15,000 cases of pediatric cancer a year, over 80 percent of children survive and most have a very good quality life. In contrast, of the more than 100,000 children who develop pediatric cancer each year in sub-Saharan Africa, 90 percent die. In an effort to correct this glaring inequity, Global HOPE established a $150 million campaign to launch their program in three initial countries, including Botswana.

In September 2018, Dr. David Poplack, Director of Global Hope and Associate Director of Texas Children’s Cancer and Hematology Centers, had the pleasure of hosting His Excellency OP and Mrs. Masisi in Houston, Texas. The visit offered an opportunity to assess the progress made to help combat pediatric illnesses in Botswana including HIV/AIDS.

“As First Lady of the Republic of Botswana, Mrs. Masisi has an incredibly powerful voice capable of raising awareness and garnering support for initiatives to address childhood cancer in sub-Saharan Africa,” said Dr. Poplack. “With our hallmark program in Botswana, she was able to see the work we are doing firsthand, and I believe she has the ability to help expand our reach. I also believe she will be an extraordinary advocate for children with cancer and blood disorders.”

With the support of Mrs. Masisi and the entire International Council, Global HOPE will have the ability to expand its reach and to dramatically improve childhood cancer treatment and care in sub-Saharan Africa.

July 8, 2019

Texas Children’s patient Eden Green visits Capitol Hill to advocate for graduate medical education funding.

Progress doesn’t just happen. It takes real conversations between people who care.

That’s exactly what happened recently when Texas Children’s Hospital patient Eden Green visited Washington, D.C., during the 15th annual Speak Now for Kids Family Advocacy Day.

The vibrant 14-year-old met with a handful of Texas lawmakers, including former Congressman Gene Green and Representatives Michael McCaul and Dan Crenshaw. She hopes her voice brings change and increased investment in pediatric cancer research.

Family Advocacy Day, hosted by the Children’s Hospital Association (CHA), was focused on ensuring that a federally-funded pediatrician training program receives an increase in financial support, among other issues.

According to CHA, the hospitals that receive Children’s Hospitals Graduate Medical Education (CHGME) train approximately half of the nation’s pediatricians. Texas Children’s is one of those hospitals.

Increased CHGME funding helps recruit and retain the highest quality pediatricians.

A Young Advocate in the Making

Eden’s story is one we can all be proud of. In 2015 at just 10 years old, she was diagnosed with a rare tumor – so rare it still doesn’t have a name. It had spread throughout her body. An individualized treatment plan was drafted by the Rare Tumors and Neuroblastoma Programs at Texas Children’s Cancer Center, which included many rounds of chemotherapy and hip surgery.

Eden was cancer free for nearly two years when she relapsed in June 2018. Thanks to funding by Alex’s Lemonade Stand Foundation (ALSF), Eden had the opportunity to participate in a novel clinical trial at Texas Children’s Cancer Center for pediatric patients with relapsed disease that allowed her to go into remission for the second time.

Dr. Jennifer Foster, who is Eden’s pediatric oncologist at Texas Children’s, couldn’t be prouder of her patient’s trip to D.C. Foster said she often urges patients and medical professionals to get involved in the legislative process.

“As medical professionals, we can all advocate at a patient level, but we won’t experience any real change on a global level until we tap into the policy side of health care,” Foster said. “There is so much we can do as pediatricians and getting involved in the political process is part of that.”

Foster goes on to say that everyone can help the cause in their own way.

“Eden is an incredibly dynamic individual – truly someone who lights up a room when she walks in. Speaking out and interacting with people is one of her gifts and she’s using it to give back to Texas Children’s.”

You can also help.

Texas Children’s is a hospital that receives CHGME funding. You can help the cause! Let your voice be heard, here: https://actnow.io/m8pHocn

July 2, 2019

As the nation celebrates Independence Day on July 4, Maria Dahl reflects on her service in the U.S. Army and how her experiences inspired her to pursue a career in nursing. Read more