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Patient Noah Stewart Remembers the 2011 Tornado Outbreak and His Care Team at Children’s

Ten years ago, on April 27, 2011, Noah Stewart – then an 8-year-old living in Pleasant Grove – was one of more than 60 children treated in our Emergency Department as part of a widespread outbreak of tornadoes throughout Alabama.

Noah Stewart shelters in the closet just 15 minutes before an April 2011 tornado demolished his house. Wearing the helmet may have saved his life, one doctor says.

Now 18, Noah is a freshman at Troy University and is a member of the Sound of the South marching band drumline. We caught up with Noah about his experience that day. Experts said one of the reasons he survived a tornado striking his home was because he was wearing a baseball helmet. At the time, that was a novel concept. Today it’s a standard part of severe weather preparation.

“The first thing I remember about April 27, 2011, is there being a tornado warning and my mom telling me to put on my baseball helmet,” he remembered. “At that point, I got a little worried, grabbed the stuffed animal my girlfriend had given me and went to our designated safe place, my parents’ walk-in closet. My dad got home from work and we, my parents, my sister Haley and I, all took shelter literally minutes before the tornado hit.

“I remember losing power, the whistle of the wind and then a very, very low rumble. It sounded like a train, getting louder and louder the closer it came. In an instant, the house exploded, and we were all sucked out by the tornado. The experience was like being swallowed by a huge wave in the ocean; I couldn’t tell up from down or right from left – I was lost. It was over as quickly as it began except that I was about 50 yards from where I was only seconds before, now laying in a field of debris against the twisted remains of a tree stump.  My parents and sister landed in different locations, but they all crawled to me. There was an immediate calm after the storm, but we soon noticed everything we owned was gone. In that moment it didn’t matter because we all survived and so did our dogs, Jack and Cody. My mom and Haley were taken by ambulance directly to the hospital. I was placed on the remains of a broken door. My dad and I were carried in the back of a pickup truck to a triage location several blocks away. Dad and I were separated when he was transported by ambulance. Several hours later, I was sent to Children’s. I was wet, cold and alone without my family but the doctors, nurses and staff were amazing. They made me feel safe and comforted me as they stitched and bandaged my cuts and bruises.”

Noah was treated that night by Drs. Mark Baker and Michele Nichols and a host of other staff.

“I wish I knew the names of each person that helped me that night,” he said. “Children’s befriended me and allowed me to be a part of several events like the Regions Classic and the dedication of the Benjamin Russell Hospital for Children. This gave me an opportunity to tell my story and about the importance of protecting your head by wearing a helmet during a storm. I had a reunion with the ER doctors, nurses and staff on the one-year anniversary of the tornado. I am unable to visit on this anniversary as I will be in Troy but my admiration and appreciation for the doctors, nurses and staff of Children’s is as strong today as it was on April 27, 2011.

“Thank you all so much for what you did for me that night and what you continue to do for the children of Alabama and throughout the world. Just as I told you on the one-year anniversary visit, you guys are my angels and I will always appreciate the care and support you gave me. You are truly heroes! Because of Dr. Bakers’ research on the use of helmets as protection during tornadoes, many lives have been saved and the use of helmets during emergency weather events is widely practiced and encouraged by life safety professionals throughout the United States.”

Noah Stewart currently attends Troy University

Is your family prepared for severe weather? The 2021 tornado season is off to a deadly start. Already this year, twisters are blamed for the deaths of more than 200 people in the US.

“Children are at risk during tornadoes because of their relatively large heads,” Dr. Baker said. “Noah’s helmet helped protect him after he was thrown high in the air. We also found two more children who were protected by infant carriers when the tornado hit their homes. Helmet use and getting in a safe place can make a big difference when violent weather strikes.”

Have your safe place planned as part of a disaster plan. During a tornado, the best bet is to lay low. The basement is the best tornado safety shelter if available; if not, have an alternate place to seek shelter quickly when necessary. If you’re outside when a tornado hits, seek cover in a safe building or in a ditch, using your hands to protect your head and neck. Families who live in a mobile home should talk to neighbors or the park owner about tornado safety options.

  • Have a portable radio (with new batteries) on hand as part of your tornado safety plan. In the event of an emergency, someone needs to listen and be aware of the two types of reports given when weather conditions are right for a tornado: A “tornado watch” means that a tornado is possible. A “tornado warning” means that a tornado has been sighted; people who are in its path should go to their tornado safety shelter immediately. A local or state map will help you visually follow the path of the tornado when listening to radio reports.
  • Have a helmet designated for each member of your family in your safe place. The most common injury related to tornados is head injury, and doctors believe helmets can prevent the majority of head trauma during severe weather. Baseball, bicycle and football helmets are all good examples of protective head gear and should have a well-fitted chin strap to keep the helmet secure.
  • Put together an emergency supplies kit. The emergency kit should include everything that might be needed during or in the aftermath of a tornado, especially if power is lost or water sources are affected. Bottled water, flashlights, batteries, prescription medicine, a first aid kit, and snacks or non-perishable food for the family are essential components of the supplies kit. Make sure the kit is easily accessible in the event it’s needed. Include notepad and pen in your kit if you are worried that your child might be anxious or frightened while executing your disaster plan. Having him or her write a journal entry on the experience of preparing for a tornado or inclement weather helps your child overcome feelings of helplessness and will also provide an interesting record of events for the future. Also, based on your child’s age, you may be able to assign him a task or two to help him or her feel more in charge of the situation. Something that doesn’t require much supervision is ideal; tasks such as testing all the flashlights and replacing batteries as needed, putting together snack bags for family members, or even occupying younger children while you are working on preparations. Giving your child some responsibility will make them feel more secure and help reduce their anxiety about the chaotic nature of the storm.
  • Moving lawn furniture and trash cans out of the storm’s path and removing dead limbs from trees in the yard can be a life-saving tornado safety precaution. Even small items can become dangerous when propelled by high winds. Make sure to move these items several hours before the storm arrives.
  • Set up a disaster plan with extended members of your family. Tornados typically strike during late afternoon and early evening, but they have been known to touch down in the middle of the night. Families should decide ahead of time which family members are responsible for calling the rest of the family to warn them and to provide them with updates as part of the tornado safety checklist.
  • If tornado sirens are sounded, it usually indicates that a tornado warning has been issued by the National Weather Service and you need to get to your “safe place.” If you happen to be outside and the sirens go off, do not panic. Find a culvert pipe, a ditch, or a low-lying area. Lie flat, cover your head and get to safety as soon as the storm has passed. In the event of severe weather, the sirens will sound when there has been damage equal to that is similar to that of a small tornado. This damage may include downed trees, power lines and property damage.

For more information on this and other children’s health and safety issues, please visit childrensal.org.

Children's, News

Children’s of Alabama President, CEO Mike Warren Announces Retirement; Tom Shufflebarger Named New CEO

Mike Warren
Mike Warren

BIRMINGHAM (April 15, 2021) – Mike Warren, president and chief executive officer of Children’s of Alabama, is retiring from the state’s only freestanding pediatric hospital, effective June 1, 2021.

Warren, who has served as CEO at Children’s since January 2008, will be succeeded by Tom Shufflebarger, currently serving as chief operating officer and senior executive vice president. The announcements were made by the hospital’s board of directors today.

“Together, we have accomplished a great deal over these past 13 years, the crown jewel of which is the Benjamin Russell Hospital for Children. That addition transformed our campus and allowed us to move transplant surgery and cardiovascular services to Children’s – truly making us a comprehensive pediatric medical facility. Along the way we greatly expanded many services, making tremendous progress in fulfilling our mission to the children and families of Alabama. With Tom set to take the helm, Children’s is positioned to achieve even greater things,” Warren said.

“Under Mike’s leadership, Children’s has thrived, and we are grateful for his service. We are confident in Tom’s ability to continue to carry out the mission of Children’s and guide the organization as a leader in pediatric healthcare here in the state, the region and beyond,” said Temple Tutwiler III, chairman, Children’s Board of Trustees.

Shufflebarger joined Children’s in 1992, having previously served as the budget director and director of physician recruitment and development for Brookwood Medical Center. At Children’s, Shufflebarger has managed the hospital’s daily operations and policy decisions. He also directs the operations and development of Children’s Physician Services, including Pediatric Practice Solutions (Children’s primary care practices), Hospital Ambulatory Care Services, and business relationships with Health Services Foundation and hospital-based physicians.

Tom Shufflebarger
Tom Shufflebarger

Shufflebarger is an honors graduate of Duke University where he earned both a Bachelor of Arts in economics and a Master of Business Administration. He is a Fellow of the American College of Healthcare Executives and has served as a Trustee of the Alabama Chapter of the American Hospital Association. He currently serves as chairman of the Child Health Patient Safety Organization, an affiliate of the Children’s Hospital Association. Active in numerous community organizations, he has served in volunteer leadership roles with the United Way of Central Alabama, American Red Cross, Magic Moments, the Lakeshore Foundation, Riverchase United Methodist Church and Hoover City Schools.

“I am honored to be named the next CEO of Children’s of Alabama,” Shufflebarger said. “It is a humbling experience to be part of the strong legacy of providing care for ill and injured children from throughout the region. As the past year has taught us, Children’s of Alabama stands ready to face the challenges of modern healthcare, while remaining firmly dedicated to providing the highest standards of care for our patients and their families.”

Under Warren’s leadership, Children’s of Alabama has grown both in size and standing.

In May 2009, the hospital broke ground on an expansion that would become the Benjamin Russell Hospital for Children. The 12-story building was designed to accommodate projected growth in patient volume, anticipated medical technology needs and the planned consolidation of pediatric services including cardiovascular surgery and comprehensive solid organ transplant care. The $400 million facility opened to patients in August 2012.

In 2010, six of the hospital’s programs were ranked for the first time among the nation’s best children’s hospitals by U.S. News & World Report. The most recent ranking released in June 2020 marked the 11th consecutive year that Children’s has been included.

The relationship between Children’s and the University of Alabama at Birmingham strengthened under Warren’s leadership as the two institutions worked together to offer world-class pediatric health services in an environment that fosters world-class research, excellence in medical education and access to leading-edge treatments for pediatric illnesses and injuries.

Warren has long been a leader in Birmingham’s business community, previously serving as chairman and chief executive officer of Energen Corporation and its two primary subsidiaries, Alagasco and Energen Resources. Prior to that, Warren practiced law with the Birmingham firm of Bradley, Arant, Rose & White. Warren served 22 years on the Children’s of Alabama board of trustees before he was named the hospital’s CEO. He has been in involved in many state and local efforts and served as chairman of the Business Council of Alabama, the United Way, Leadership Birmingham and Leadership Alabama. He has also been chairman of the Metropolitan Development Board, and the area American Heart Association. He has twice chaired the general campaign for the United Way and the United Negro College Fund. In 2004, Warren was inducted to the Alabama Academy of Honor.

Since 1911, Children’s of Alabama has provided specialized medical care for ill and injured children. Ranked among the best children’s hospitals in the nation by U.S. News & World Report, Children’s serves patients from every county in Alabama and nearly every state. With more than 3.5 million square feet, it is one of the largest pediatric medical facilities in the United States. Children’s offers inpatient and outpatient services at its Russell Campus on Birmingham’s historic Southside with additional specialty services provided at Children’s South, Children’s on 3rd and in Huntsville and Montgomery. Primary medical care is provided in more than a dozen communities across central Alabama. Children’s is the only health system in Alabama dedicated solely to the care and treatment of children. It is a private, not-for-profit medical center that serves as the teaching hospital for the University of Alabama at Birmingham (UAB) pediatric medicine, surgery, psychiatry, research and residency programs. The medical staff consists of UAB faculty and Children’s full-time physicians as well as private practicing community physicians.

Children's, News

Viral Immunotherapy For Pediatric Brain Tumors Shows Promise

A modified herpes virus, alone and in combination with radiation, has been shown to be well tolerated with early signs of clinical effectiveness in pediatric patients with high-grade brain tumors, or gliomas, according to findings from researchers at the University of Alabama at Birmingham and Children’s of Alabama. The findings were presented at the virtual American Association for Cancer Research Annual Meeting 2021, held April 10-15 and published online in the New England Journal of Medicine on April 10.

Dr. Gregory Friedman
Dr. Gregory Friedman

Brain tumors are the most common solid tumor in children, and aggressive types like glioblastoma have an extremely low survival rate: as low as 10 percent five years after diagnosis. Even tumors successfully treated by surgery, radiation and/or chemotherapy have a high recurrence rate.

“This is the first study utilizing delivery of a viral immunotherapy directly into the tumor of children with brain tumors, and the results indicate the engineered herpes virus can be delivered safely into tumors located in all areas of the cerebrum in children,” said Gregory Friedman, M.D., professor in the Department of Pediatrics at UAB, research scientist at the UAB O’Neal Comprehensive Cancer Center, and director of developmental therapeutics for the Alabama Center for Childhood Cancer and Blood Disorders at UAB and Children’s of Alabama. “The key findings thus far are that the approach is safe and well tolerable, and the preliminary evidence of efficacy is promising.”

In the Phase 1 clinical trial of 12 patients between 7 and 18 years of age, the investigators employed a modified virus known as G207, derived from the herpes virus responsible for cold sores. The virus is genetically altered so that it infects only tumor cells. When injected into a malignant brain tumor via a catheter, the virus enters the tumor cells and replicates. This kills the cell and releases the virus’s progeny to hunt out other tumor cells. Additionally, the virus induces a strong immune response by the body’s immune system, which can attack the tumor. The trial tested G207 alone and then combined with a single low-dose of radiation designed to increase virus replication and spread throughout the tumor.

G207 is the product of more than 30 years of research. James Markert, M.D., MPH, chair of the UAB Department of Neurosurgery, was part of the team at Massachusetts General Hospital in the early 1990’s that first developed the concept of using oncolytic herpes viruses. He worked on the parent virus for G207 and conducted the first clinical study of G207 at UAB. Today the use of viral therapies is under investigation for nearly every type of cancer.

A second-generation virus, called M032, has been developed by Markert and collaborators Yancey Gillespie, Ph.D., professor of neurosurgery, and Richard Whitley, M.D., Distinguished Professor of pediatric infectious disease, and is in clinical trials at UAB in adults with glioblastoma. UAB investigator Renee Chambers, DVM, M.D., is using M032 in a study of brain tumors in dogs, which can develop tumors very similar to those in humans.

In the current trial, 11 of the 12 patients demonstrated a treatment response. The overall survival rate was more than double the typical survival rate for children with high-grade glioma. Some 36 percent of the patients thus far have survived longer than 18 months, surpassing the medial overall survival for newly diagnosed patients with high-grade glioma.

Friedman’s team reports that G207 alone or in combination with radiation therapy was well tolerated, with no serious adverse side effects attributed to the treatment.

“There are still more studies needed; but thus far, viral immunotherapy with several different viruses, including herpes virus, has shown promise in treating high-grade brain tumors in both adults and children,” Friedman said. “We also have an ongoing clinical trial to test the safety of G207 when delivered into the cerebellum, an area of the brain that has not been tested before in adults or children but is the most common location for pediatric tumors to arise.”

Friedman says the next steps are to determine the ideal timing to treat patients and what therapies can be used with viral immunotherapy to maximize the anti-tumor immune response. Based on the encouraging Phase 1 trial results, he and his team are working with the Pediatric Brain Tumor Consortium to develop a multi-institutional Phase 2 trial of G207 for progressive pediatric high-grade glioma, which they hope to initiate later this year.

The study was supported by the United States Food and Drug Administration Orphan Products Clinical Trials Grants Program, Cannonball Kids’ Cancer Foundation, the Rally Foundation for Childhood Cancer Research, Hyundai Hope on Wheels, St. Baldrick’s Foundation, and the Kaul Pediatric Research Institute. G207 was provided by Treovir, LLC.

Friedman is supported, in part, by contracts between UAB and Eli Lilly and Co. and Pfizer. Markert and Whitley have financial interests in Treovir, LLC, which provided G207 for the trial. 

Children's, News

How Genetics Is Helping Patients with Rare Diseases

Recent advances in genetics research are providing doctors with promising avenues for diagnosing and treating genetically based illnesses. “As genetic testing has become more and more advanced, we can really focus on smaller pieces of DNA, and even read individual letters of DNA, to look for answers to health conditions,” states Anna Hurst, Pediatrician and Assistant Professor of Medical Genetics at the University of Alabama–Birmingham.

The “Diagnostic Odyssey”

Although geneticists can be critical contributors to diagnosis, they are rarely the first health professionals patients visit when searching for answers to medical conditions.  “Usually another doctor, whether that’s a primary care physician or a subspecialist, has noticed there is something different about that individual’s health or development that might make a genetic condition more likely,” explains Dr. Hurst.

When the patient meets with a geneticist, tests are done to try to diagnose the condition. By “putting a name to it,” patients and their families can not only find guidance toward possible treatment, but also feel empowered to seek advice and comfort from national foundations and other support groups.

“I tell my families that those parent organizations can be so important, because other parents know things they don’t teach us in medical school. I always tell my families, if you hear anything in those support groups you think might help your child’s journey, let us know,” advises Dr. Hurst.

Recent Medical Advances

Great strides have been made in recent years to pinpoint location of genetic disorders, thereby leading to greater success in diagnosis and treatment. Among the most important advances has been exome and genome sequencing.

“Ten or 15 years ago, we would look gene by gene and read maybe a few genes at a time. But now, with exome and genome sequencing, we can simultaneously look at almost every gene in the body at once, to be able to take a more comprehensive approach,” says Dr. Hurst. 

There are approximately 6,000 rare diseases, with perhaps 70% of genetic origin. And, with estimates of as many as one in ten people having a rare disease (defined as an illness affecting fewer than 200,000 people), genetic research provides potentially enormous benefits for diagnosing and treating illness. 

Pilot Project and Public Information

Among the most important elements of advancing genetic diagnosis of illness are facilitating patient participation in, and promoting understanding of, the testing process. Because some types of genetic testing may not be covered by insurance, the cost can be prohibitive.

“Children’s Hospital of Birmingham has committed funding for at least 200 children to have whole genome sequencing. To date, we have enrolled about 75, and of those patients, we have a diagnosis of about 30%,” notes Dr. Hurst.

Unlike patient administered home testing, which can be helpful but often does not provide full genetic sequencing, professional medical testing combines completeness in testing with follow-up consultation. “The genome testing really makes things more personalized, and truly individualizes health care plans,” adds Dr. Hurst. 

Public information efforts are another important element of advancing genetic diagnosis and treatment. Among the programs designed to promote public awareness are Rare Disease Day, an international event held on the last day of February, and the Rare Disease Genetics Symposium, an annual two-day seminar hosted by the UAB Department of Genetics, Children’s of Alabama and Alabama Rare, an advocacy group.

“The first day of the symposium has a physician-scientist focus, and on the second, we have a parent and caregiver focus. The theme this year was using technology and collaboration to navigate the rare disease journey,” shares Dr. Hurst. Further information can be found on the National Institutes of Health website (GHR.NLM.NIH.gov), rarediseaseday.org, and Alabamarare.org.

Offering Hope and Direction

Genetic research and testing will continue to be powerful tools to combat illness, and with further medical advances will come greater empowerment for families seeking answers.

As Dr. Hurst says, “We try to help the family where they are in their journey, and how that information is affecting them. Oftentimes, when they are able to see the benefit, it becomes a very empowering experience. They might feel validated that they have an answer, and then go forward with planning medical care tailored to their specific needs.”   

**To listen to an interview on this topic with Anna Hurst, Pediatrician and Assistant Professor of Medical Genetics at the University of Alabama—Birmingham, follow this link: https://radiomd.com/childrensalabama/item/41786

Children's, Health and Safety, News

Preventing Injury

SD-InjuryPrevention-1Although cases of children and infants sick with COVID-19 are not showing up in the numbers seen in adults, they are affected in other ways. Amid quarantines and school closings, some parents are forced to watch their children and work from home while others deal with the frustration of providing for their families without a steady income. This leaves children in a vulnerable position and at increased risk of injury – the No. 1 killer and cause of hospitalization among youth.

Doctors working with the Injury Free Coalition for Kids of Birmingham are on the frontlines treating injuries resulting from ATV accidents to dog bites. Children’s of Alabama Emergency Department Medical Director and University of Alabama at Birmingham (UAB) Professor Kathy Monroe, M.D., and Children’s Pediatric Emergency Medicine Physician and UAB Professor Michele Nichols, M.D., are doing all they can to raise awareness and address a likely increase in childhood injuries amid the COVID-19 pandemic. Injury prevention professionals emphasize the safety and well-being of children so that they remain injury-free.

“We must remain mindful and vigilant,” said Barbara Barlow, M.D., founder and executive director of the Injury Free Coalition for Kids. “Our sites across the country are working to find ways to help families address motor vehicle safety, home safety and the need for safe play spaces during the virus outbreak.”

“The Centers for Disease Control and Prevention (CDC) is encouraging families to help children to stay active and play outdoors, go on bike rides, and walks, but obviously while practicing social distancing,” said Injury Free Board President Lois Lee, M.D. “The CDC also says it’s important to take regular indoor activity breaks to stretch and dance as well as keep children socially connected by helping them reach out to friends and family via phone, video chats, and writing letters or cards when it is not possible to visit due to stay at home orders.”

For more information about how to keep kids safe and engaged, visit childrensal.org/coronavirus and click on the “COVID-19 KidsHealth and Resources” tab.

In addition to keeping children injury-free, the CDC offers the following tips to help families stay healthy and virus-free:

• Cleaning hands often using soap and water or alcohol-based hand sanitizer
• Avoid people who are sick (coughing and sneezing)
• Clean and disinfect high-touch surfaces daily in household common areas (e.g. tables, hard-backed chairs, doorknobs, light switches, remotes, handles, desks, toilets, sinks)
• Launder items including washable plush toys as appropriate in accordance with the manufacturer’s instructions. If possible, launder items using the warmest appropriate water setting for the items and dry items completely. Dirty laundry from an ill person can be washed with other people’s items.

Cold-like symptoms such as fever, runny nose, cough, shortness of breath, vomiting and diarrhea have been associated with COVID-19 in children and are reasons for contacting primary care providers.

About Injury Free Coalition for Kids
The Injury Free Coalition for Kids is among the country’s most effective injury prevention programs. It is a national program developed with funding from the Robert Wood Johnson Foundation comprised of hospital-based, community-oriented programs whose efforts are anchored in research, education and advocacy. Currently, the Coalition includes more than 30 sites located in just as many cities, each housed in the trauma center of their participating institution. It is run under the guidance of a board comprised of Coalition members and approved by the organization, operated by a set of bylaws established by the governing board.

Children's, News

Perspectives of COVID-19 from a Pediatric Psychologist

By Dan Marullo, Ph.D.

With COVID-19 being declared a pandemic, we are now tasked to change our personal and collective behavior. It is understandable that many will experience fear, anxiety and anger in the coming days and weeks. This is normal and certainly a typical reaction to a crisis. However, whether we respond with grace or with terror is in our individual and collective control.

It is normal to be afraid. It is OK to acknowledge that fear and to take steps to cope with anxiety. Please consider the following:

  1. Fear of the unknown is normal. We are each subject to feeling a host of emotions such as anxiety, worry, irritability and sadness. We can also experience poor sleep or appetite, trouble with concentration, a tendency to withdraw from other people and perhaps even feeling hopeless. These can be normal reactions to the situation and it helps to recognize this in ourselves and in others. For example, recognizing that your spouse or child is uncharacteristically moody or snappish may mean that they are feeling overwhelmed and need support. Certainly, anyone feeling suicidal may need immediate attention.
  • Seek reliable information. There is much that we still do not know about COVID-19 and that alone increases fear and anxiety. Gaining reliable information is key to addressing this uncertainty. Reputable websites for updates and information include the Centers for Disease Control and Prevention, the National Institutes of Health and the World Health Organization. Websites for good psychological information related to COVID-19 include the American Psychological Association and the American Psychiatric Association.
  • Practice self-care. Because we are all susceptible to emotional distress, it becomes more important to take care of ourselves physically and emotionally. This may be complicated by social distancing given that social activities are commonly used by people to cope. We may not be able to attend religious services, go to work or school, the gym, shopping and so on. However, we can adapt and remain connected. Many churches are hosting online services, you can exercise at home using YouTube classes, and so on. A few things to keep in mind:
    • Maintain a typical routine as much as possible. Try having your kids do schoolwork at home at the times they would at school. Do the same if you are working from home.
    • Take a media/social media break. Depending on what you read or watch, COVID-19 is either the world’s biggest hoax or the end of the world. Neither is true. Seek accurate information and take a break from all the chatter.
    • Social distance does not mean social isolation. We may not be able to go out, have play dates or travel, but we can maintain contact with family and friends via Facetime and other platforms. This is especially critical for our most vulnerable family and friends, those that must be on isolation because of health concerns such as the elderly and those with underlying medical conditions.
    • Consider volunteering in some way. The simple act of giving has been shown to reduce distress in the giver. It is gratifying to see people organizing food drives and other activities to support their communities.
    • Find ways to maintain your spirits. A good sense of humor goes a long way. Our Italian brothers and sisters are singing from their balconies in defiance of their isolation. People are amazing. Find your path.
  • Be a role model. Our children are watching how we react to this crisis. What do you want them to see? Children and teens rely on the adults in their lives to model and teach behavior. A child’s coping often relies on how adults cope. Now is the time to teach resilience, compassion, self-sacrifice and healthy coping. These are lessons children will remember for the rest of their lives. We adults should manage our emotions and fears, and be the leaders our children need us to be.
  • Support our children. Our children are responding to this crisis as well and need support during this time. How children cope and what they need varies by their age and level of development. For example, small children respond to the distress around them and need comforting and security. School aged children, tweens and teens need information that is tailored to their age (Younger children need the basic facts, older kids can deal with more detail and abstraction). Recognize that a change in behavior may be a sign of distress and an opportunity to engage and support. Please consider:
    • Maintaining a typical routine as much as possible. This includes schoolwork, bedtimes and mealtimes.
    • Giving age-appropriate information and answering questions honestly.
    • Monitoring use of TV and other media, particularly if your child is constantly looking at COVID-19-related content (Remember, bad information is scary).
    • Providing opportunities for kids to give and contribute. Help them organize a food drive or a video chat with nursing home patients. This promotes a sense of engagement and teaches resilience.
    • Managing your own emotions. Remember, our kids are watching. What do you want them to learn?
  • Acknowledge and recognize grief. Many of us are experiencing loss and uncertainty and it is OK to acknowledge that fact. As this process unfolds, we may lose people we love, jobs that we depend on, perhaps even that sense of safety that we once enjoyed. Coming to terms with loss is necessary and healthy. Now is the time for each of us to reach out as individuals and as a community to support one another, in small ways and in large.
  • Look for the lesson. I, like many of you, have experienced tragedy in my life. From that experience I have learned valuable lessons. I have learned much about myself and what I value and treasure. I do not know what lessons each of us may learn from this pandemic, but I do know there is something of value to learn if we leave ourselves open.

As I conclude this message, I feel a tremendous sense of community and hope. In some perverse way, this event has given all of us a “time out.” Perhaps this is our time to reflect, reconnect with others and remember what is truly of value in this life. I wish you all well.

Dan Marullo, Ph.D., is a pediatric psychologist and neuropsychologist at Children’s of Alabama and the University of Alabama at Birmingham.

Children's, News

Oncology School Liaison Helps Patients Return to School with Ease

School is one of the most important parts of a child’s life. Continuing to keep up academically and stay connected with classmates is important for all children diagnosed with cancer or a blood disorder. Sometimes it is difficult and scary to return to school after their diagnosis and treatment or after a long hospital stay. The struggle may not always be due to medical reasons, but often the fear of classmates teasing them because of a change in appearance, worrying about keeping up with school work, or maybe feeling isolated from their peers.

The Alabama Center for Childhood Cancer and Blood Disorders, is a partnership between Children’s of Alabama, the UAB Division of Pediatric Hematology and Oncology, the UAB Comprehensive Cancer Center, the UAB Institute for Cancer Outcomes and Survivorship, along with childhood cancer research entities, such as the National Cancer Institute and Children’s Oncology Group. The Hope and Cope Psychosocial and Education Program uses a family-centered approach to provide support and services for emotional health and well-being.

The STAR (School/Social Transition and Reentry) initiative is a service of the Hope and Cope Psychosocial and Education Program that provides patients with an education/school liaison who maintains ongoing communication between the medical team, the child’s school and their family. This helps the student return to a more normal lifestyle and to feel comfortable going back to school.

 

“We help facilitate the patient’s reentry to school when the oncologist medically releases them to return,” said Education/School Liaison Caroline Davis, MS, CSP. “Our goal in a reentry class presentation is to help the child’s classmates better understand the child’s diagnosis and cancer treatment journey, and to inform the teachers about any special accommodations the student may need in the classroom, or unique learning challenges the student may have.”

 

There are a variety of specialized services that the education/school liaison offers to the child and their family throughout their treatment and into survivorship. Here is a look at how the liaison can help.

  • Aid the familyin understanding their child’s learning needs; to understand federal and state law, and how to advocate and effectively communicate with their child’s school system.
  • Assist the parents in obtaining special education servicesor program modifications when needed, including collaborating on Individualized Education Planning (IEP) meetings.
  • Accompany the parents to school meetings in person or participate through Skype (i.e., a software application that enables users to have video-conferences over the internet).
  • Present workshopsto educate the school system about unique learning patterns of childhood cancer survivors and evidenced based recommendations.
  • Help young people stay in touchwith classmates through use of webcams until they are ready to return to school.
  • Prepare young people, parents, and teachersfor the return to school after a long absence and empower the child to better advocate for themselves.
  • Give classroom presentationsto help classmates understand and support the young person living with a serious illness.
  • Teach problem-solving skills and role playingto help the young person or family members with school adjustments.

 

Davis states, “When we go to the classroom, the child is often overwhelmed and scared about returning to school, but after we show their personalized presentation about their journey to the other students, you can see the child begin to interact with peers and be involved in the discussion. It is extremely rewarding to see such a change in their confidence and self-esteem!”

 

For information about this exceptional benefit and/or our STAR program, please contact Caroline Davis at (205) 638-5421 or csdavis@peds.uab.edu.

 

Children's, News

Multidisciplinary liver clinics coming to Children’s of Alabama

By Dr. Reed Dimmitt, Director, Division of Pediatric Gastroenterology
David E. Dixon Endowed Chair in Pediatric Gastroenterology

With the addition of two more physicians in the coming months, Children’s of Alabama will soon be able to expand the care we provide to pediatric patients with liver disease.

Gillian Noel, M.D., is finishing her fellowship at Emory and will join us soon. Within a few months, we will welcome Mike Leonis, M.D., from Cincinnati, Ohio, as the director of our new pediatric liver center. Both are board certified in pediatric hepatology and will be the first two such certified physicians in the state.

These staff additions are the realization of a longtime goal to establish a liver center benefitting children across Alabama. We will be able to increase the number of liver transplants performed on children around the state, allowing physicians to refer more patients to Children’s instead of Vanderbilt and Emory. We will also expand specialized clinics for other conditions such as liver disease associated with cystic fibrosis, pediatric fatty liver disease and metabolic diseases.

These clinics will be multidisciplinary, including nutrition, genetics, pulmonary, psychology and child life. When patients come in from around the state, they will be able to see everyone at one time without making multiple appointments. Even local patients will find the process to be more efficient, requiring less time off school and work to get the care they need.

In addition to helping simplify the process for patients and their parents, these multidisciplinary clinics have proven to improve outcomes. The collaborative nature of the clinics will enable us to discuss cases from our own specialty while developing a transdisciplinary approach to the care of patients. We are able to care for the total patient, not only addressing their physical needs but also how their condition affects them emotionally and developmentally in a programmatic manner.

In conjunction with the liver clinics, we are planning an expanded pediatric obesity program so we can have interventions with these children as well.  The clinics will partner as needed to provide the full scope of care for all our patients.

With the addition of these doctors Leonis and Noel, we’ll have three physicians dedicated to liver disease and 13 faculty members in our group. We are pleased to welcome them in our efforts to continually improve care through the Division of Pediatric Gastroenterology at Children’s.

Children's, News

Advances in genetic testing result in more effective diagnoses

By Bruce Korf, M.D., Ph.D.
UAB Professor and Chair, Department of Genetics

Dr. Bruce Korf

Dr. Bruce Korf

Birmingham pediatricians now have expanded options for easily accessing genetic expertise and testing, with the recent opening of a genetics clinic at Children’s of Alabama.

For physicians, it’s important to consider when to refer a patient for genetic evaluation, especially for those patients who were unsuccessfully evaluated in the past.

Most pediatricians have experience in recognizing children with congenital malformations, intellectual disability or developmental delay that may have a genetic component. When those patients receive a diagnosis, parents have at least a minimum understanding of what is happening with their child, how best to manage that child, and whether it may occur in their other children.

Unfortunately, in the past a large percentage of patients went undiagnosed, even with an evaluation, putting the parents of young children on a seemingly endless quest to decide how best to manage their child’s medical conditions.

A great deal has changed relatively recently, however, and new tools, including microarray and genome sequencing, are available, which means we have the ability to achieve diagnoses that were not available to us before. So if you have been following a patient with medical issues that you suspect are genetic in origin, and that patient has not had genomic sequencing, it is likely time to refer them to a clinic for retesting.

One of the new tools available to us is microarray testing, which gives us the ability to make a definitive diagnosis at much higher rates than we could expect just a few years ago. Older tools would enable us to see the big picture, much like a satellite picture of the earth. Today’s tools are more like the Google Earth app, allowing us to zoom down to street level, so we can see detail on the genome that was previously impossible.

Genome sequencing is another tool that has improved our ability to diagnose. The cost for the test is dropping dramatically. Once costing $100 million per run, the test and analysis are now in the $6,000 to $7,000 range. While that is still a lot of money, compared to the cost of other medical tests it is actually fairly reasonable.

Microarray can be expected to pick up the genetic cause of 15 to 20 percent of autism spectrum disorder cases. Genome sequencing can pinpoint a diagnosis in about 30 percent of cases of children with intellectual disability, autism spectrum disorder, or congenital anomalies. Putting the two tests together means we can expect a definitive diagnosis in 50 percent of the cases presented to us. Considering that even five years ago we could only expect to diagnose about 5 percent, that’s a tremendous step forward in a very short time.

At one time, a genetic diagnosis relied on the physician’s ability to predetermine the underlying problem in order to test for that particular disorder. Today, we are able to diagnose based on the tests, even finding conditions so rare that no physician would have considered testing for them in the past.

And when a diagnosis still eludes us initially, we can now share results and experience with other geneticists around the world, enabling us to establish a diagnosis we may not have been able to make alone.

In short, the tools we have at our disposal now have never been more powerful, so if you are a pediatrician following a patient and have been unsuccessful getting a diagnosis in the past, it is worth taking a second look now.

Of course, putting a name to a disorder is only part of the battle. The next step is knowing how to treat a patient’s condition, and we have made progress in that area as well. Certainly, we can’t say we are able to treat every condition we see, but once we figure out which gene underlies the condition, we then begin to ask why the change in the gene causes the problems it does. And we are gradually figuring that out and identifying drugs that improve quality of life.

With such dramatic and rapid developments in the field of genetics, there are many implications to be considered as we move forward. There is increasing discussion that perhaps everyone should have their genome sequenced, as the cost goes down and the feasibility of the testing goes up. This emerging area will have to be addressed carefully. Between 1 to 3 percent of people whose genes are sequenced will discover a condition they did not realize they had or were at risk for, and virtually everyone can learn how their body manages specific medications or can become aware of risk factors for common diseases. But there are also questions about what options exist to manage these risks once they are known. We will have to proceed carefully in light of our increasing technological abilities.

For patients with known medical problems that can be addressed with genetic evaluation, however, there are ample reasons to make referrals and try to determine a diagnosis that can improve quality of life for the patient and their family.

We have a new clinic integrated into Children’s, with access to parking and other specialists, making genetic evaluation more convenient for parents than ever before. In addition to our Children’s clinic, we have a prenatal diagnosis program through ob/gyn and maternal fetal medicine at UAB, and our newest clinic at Kirklin Clinic for adults.

If you have questions about referring a patient to one of our Birmingham area clinics, please call (205) 934-4983 to discuss.

 

Children's, Health and Safety, News

Talking to Children about Current Events

In this day and age, children are exposed to violent and disturbing topics on the news. Reports on natural disasters, shootings and terrorist attacks can be confusing to a child, teaching them to view the world as a scary place. But there are benefits in raising children who are aware of what’s going on in the world.

Dr. Dan Marullo is a Pediatric Psychologist at Children’s of Alabama. He says whether parents should share current events with their child depends on the age and developmental level of the child.

“It definitely depends on the age of the child,”Dr. Marullo says.”Kids of different ages have different needs and different developmental levels. I think regardless of the age of the child, one thing to keep in mind is children learn how to cope with adversity by watching their parents.”

Dr. Marullo says the first thing for any parent to do is to check how they’re coping with the news or what’s going on around them. Parents should keep things in perspective and help children to understand that television has a way of shrinking the world and bringing it into our living rooms. A child watching a news story about an earthquake in California may lose sleep thinking the same thing could happen in Alabama.

Dr. Marullo says younger children, toddlers and preschoolers probably don’t need to see a lot of the bad things on television. “They would have a very hard time managing that so minimizing exposure would be important,”he says.

For school age children, the approach should be different. “For older children, they’re probably going to come across media on their own,”Dr. Marullo says. “It’s important for parents to have a dialogue with their child. Watch the media with them, watch the news with them. It certainly makes a great topic of conversation for dinner time. That way parents can monitor their child’s exposure but also answer their questions and model their own behavior.”

For parents of school age children, keep in mind a little exposure to adversity is beneficial. “The way we learn to deal with adversity is by experiencing adversity,”Dr. Marullo says. “That doesn’t mean we expose our children to everything, but a little exposure with good guidance from a parent is crucial for their healthy development.”

Parents may also want to talk to their child about what can be done to help in a tragic event. Children may gain a sense of control and feel more secure when they think of ways they can help those affected by the tragedy.

If a child seems overly anxious, parents should encourage a break from television. Read, play board games or go outside. Look for opportunities to bond as a family and put things in perspective.