Bear Hugs: Engaging Families to Create a More Comforting Experience

DSC_0281With the help of philanthropic support, Children’s National’s child life team and nurses have raised the bar on how we care for kids. Some routine medical procedures— having blood drawn, an IV inserted, or nearly anything involving needles—can be scary to children no matter how brave they are. At these times when they must remain still, kids would rather be hugged than restrained. Parents are taught to perform Bear Hugs Comfort Hold, which calm and relax children facing even the most difficult procedures.

Not only do they help the child get through stressful moments, Bear Hugs also bring parents and family members into the medical process. It is a natural fit, according to Terry Spearman, Child Life Services Manager at Children’s National. In the past, parents often did not want to be associated with the pain their child was experiencing. Now, parents are welcomed and invited by health-care providers to be directly engaged in a comforting way with their child during these procedures.

When a parent uses a Bear Hug, it is much more reassuring and comforting since Mom or Dad is someone well known, trusted, and loved who is helping to keep the child still. The child and parent have more control over the experience with the use of a Comfort Hold, and the child experiences less emotional trauma. A Children’s National staff member and parent says this about the difference Bear Hugs made with her child during treatment:

“Using Bear Hugs with my daughter, who was 13 months old at the time, made all the difference in her comfort during the procedure. She appeared more relaxed by having me hold her while also being in a position that was good for staff. I felt empowered and a part of her care in a way that was second nature to me, just holding my baby. I will never forget that experience.”

Sisters Approach Mt. Kilimanjaro Climb Committed to Help Others

800px-Uhuru_Peak_Mt._Kilimanjaro_2“It’s every human being’s duty to ensure that we leave this world better than we found it,” Cidalia Luis-Akbar said in an interview with the Maryland Business News about her mission to climb Mt. Kilimanjaro to raise money for babies. Owners of M. Luis, a successful asphalt manufacturer and construction services company, Cidalia and her sister, Natalia Luis, will climb the mountain next month to raise money for the fetal medicine program at Children’s National.

As the article details, Cidalia has a very personal reason for wanting to help more babies survive, and she was grateful for the care that allowed her to give birth to her daughter in 2009. As they scale the 19,341-foot mountain in Tanzania, they will be thinking of their own blessings while helping other families get the specialized health care they need.

The funds they raise will help babies in the Washington area, and will potentially improve care for infants around the world. You can help them reach their goal by making a donation online. Read “Maryland Sisters, Business Leaders to Scale Mountain for Babies.”



Care for Kids Card: Support Children, Save Money at Your Favorite Stores

Shop-Save-Twenty-Percent-e1409612589248Beginning Friday, you can support kids who need health care while saving money at nearly 200 shops and restaurants. For the 11th year in a row, the Board of Visitors for Children’s National Health System’s Care for Kids Card program offers a 20 percent discount at top area retailers with the purchase of a $50 card.

Between Friday and Oct. 26, your Care for Kids Card will help you save at Bloomingdale’s, Brooks Brothers, Henri Bendel, Lilly Pulitzer, Mulberry, and many other home, clothing, and accessory stores, as well as restaurants and bakeries like Georgetown Cupcake and Tony and Joe’s Seafood Place. You can view the complete list online. Cards are available at participating locations and online at the Board of Visitors website. All proceeds from the card sales support Children’s National.

The Board of Visitors for Children’s National provides a critical volunteer force and important source of fundraising for the health system. To date, the board has awarded grants and major gifts to the hospital totaling more than $8 million. These funds help strengthen patient and family care, support research, purchase equipment, and develop innovative patient treatments.

As Nurse and Supporter, a Lifelong Connection to Children

Phillips_Margaret in uniformOver 45 years ago, Margaret Phillips, a trained nurse practitioner, read a newspaper ad for a nurse who could work in the Neonatology Intensive Care Unit, or NICU. “At the time, the NICU was a fairly new concept,” she says. “I applied for the job and got it.”

Later, Margaret and her husband Robert moved to Maryland and she began working in Children’s National’s NICU. Over the next 28 years Margaret watched as neonatology and fetal medicine flourished. “I feel like I’ve lived the history of the field,” she says. “When I began, we lacked the technology to save babies born under three pounds. Today, babies as little as two pounds have a good chance of survival thanks to medical progress and philanthropic investment.”

Now retired, the Phillipses make a point to give back. Last year, they generously completed a charitable gift annuity. “I’ve always been healthcare-oriented,” says Robert, who earned a PhD in health physics, helped develop the standards used in pediatric imaging, and spent 32 years at the Food and Drug Administration.

Inspired by his wife’s work, Robert believes their donation is critical to advancing the cutting-edge research that will continually help revolutionize care for babies. “We, as a society, spend a lot of time and money on advanced treatment that would not be necessary with accessible medical care earlier on. And supporting Children’s National gives sick children a better chance at life.”

Margaret reflects often on her nursing days at Children’s National and has a lot of memories that remind her why their donation is so important. “One day,” she says, “a handsome 17-year-old boy walked in with his mother. I remembered the last time I had seen him as a terribly sick baby. And now he was thriving.” Margaret smiles and adds, “This is the joy in neonatology. Because of the care delivered at Children’s National, kids can go on to lead happy, normal lives.”

What will your legacy be? Learn more about charitable gift planning.

Why Study Rare Diseases?

Elizabeth CiusThe Washington Business Journal recently asked Dr. Marshall Summar, division chief of genetics and metabolism at Children’s National, about a question he frequently hears: “Why do you study rare diseases when they affect so few children?”

His answer is simple: because many of the children and families he sees in the genetics clinic have no answers, and nowhere else to turn. There are more than 7,300 rare diseases, which affect an estimated 18 million to 30 million Americans. About 80 percent of these diseases have a genetic origin, and about half affect children.

Learning more about rare diseases often leads to findings that improve treatment for more common conditions, Dr. Summar said. When using an amino acid to treat a child with a rare condition called urea cycle disorder, doctors discovered a gene related to problems with pulmonary blood pressure. That finding showed doctors that they could use that amino acid helped reduce the risk of problems with pulmonary blood pressure after a child had surgery.

Philanthropy is critical to studying these diseases, because they don’t get the attention or funding that more common conditions get. “While we’re trying to treat [these children], they are some of the best teachers that we have,” Dr. Summar said. “People say, ‘Why study rare diseases?’ This is why.”

Read “Why Children’s National Medical Center is Putting So Much Money into Studying Rare Diseases.”


Washington Area Lexus Dealers Donate $132,500 through Home Run for Kids

Washington Area Lexus Dealers presented a check for $132,500 to Children’s National, marking the conclusion of the Home Run for Kids promotion.
With Screech and Dr. Bear, the Washington Area Lexus Dealers present a check to Children’s National at Nationals Park on Sept. 26.

For the third year in a row on Friday, the Washington Area Lexus Dealers presented a check to Children’s National at Nationals Park, before the start of the Washington Nationals game against the Miami Marlins. The event marked the conclusion of the Home Run for Kids promotion, through which the the Washington Area Lexus Dealers donated to Children’s National for every Nationals home run in the 2014 season. Combined with Lexus’s support of the 2014 Children’s Ball, the total contribution was $132,500.

Formerly Conjoined Twins Mark 1st Birthday at Children’s National

twinsEarlier this month, 1-year-old twins Tyler and Tyson celebrated their first birthday at Children’s National with their siblings, parents, grandparents, and great-grandmother. Their family calls them “miracle babies” for good reason — they were born conjoined, attached at their chests and bellies. They shared a liver, and Tyson needed heart surgery.

At two months of age, Tyler and Tyson were separated in a complicated surgery that was aided by a plastic model of the boys’ entire midsection made with a 3D printer. Their birthday party was a reunion with the Children’s National doctors and nurses who were part of their live-saving surgery.  Watch the story on NBC4.


Hyundai Offers Hope to Children Battling Cancer

HHW BlogHyundai Hope On Wheels and Washington-area Hyundai dealers on Sept. 19 awarded Children’s National Health System a $250,000 Hyundai Scholar Hope Grant for pediatric cancer research. The grant will support the work of pioneering researchers Drs. Catherine Bollard and Kirsten Williams, whose efforts will help high-risk patients with acute leukemia or Hodgkin’s Lymphoma after bone marrow transplants.

“Hyundai Hope on Wheels is absolutely critical to the Oncology Center at Children’s National,” said Dr. Jeffrey Dome, Division Chief of Oncology. “Hyundai’s strategic commitment to supporting childhood cancer research has enabled us to develop highly innovative treatments. Our goal at Children’s National is to cure cancer and enable survivors to lead happy, healthy, and productive lives. Hyundai shares our vision, and that is why we are so grateful to be one of their partners, bringing hope to families.”

Children’s National is one of 36 recipients across the country to receive a 2014 Hyundai Scholar Hope Grant. In all, Hyundai Hope on Wheels is awarding $9 million in research grants this month in honor of National Childhood Cancer Awareness Month. Children’s National, a longtime partner of the organization, has received $960,000 from Hope On Wheels since 2010. See Facebook photo album.

Race for Every Child Tops $1 Million

The second annual Race for Every Child on Sept. 13 raised more than $1,050,000, topping its goal of $1 million. Donations will continue to be accepted at until November. The event attracted 4,663 participants at Freedom Plaza in downtown Washington, DC. See photos, videos, and media coverage. Watch a news clip from Fox 5.

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Race chair Carrie Marriott, top fundraiser Bret Baier, Dr. Bear, and Dr. David Wessel, co-chief medical officer at Children’s National.
The top fundraising team, Wishes for Elliott.
The top finisher, Jacob Spendelow of Arlington, Va., with a time of 16:29.1.
The top finisher, Jacob Spendelow of Arlington, Va., with a time of 16:29.1.