Friday, February 27, 2015

Mommy Advocate: How Pulse Oximetry Inspired One Mom to Help Others

Michele Coleman’s son, Dylan, was born with multiple congenital heart defects that were not detected in any of her ultrasounds or her fetal echocardiogram. A simple and inexpensive screening test known as pulse oximetry (pulse ox) saved his life, making Michele an advocate for pulse ox screening, and led her to testify in front of the DC Council on February 2, 2015.

When Dylan was born, he did not appear to be in any distress and was eating and sleeping like a normal baby, but if Dylan had not received a pulse ox screening before we left the hospital, he most likely would have died of congestive heart failure within 72 hours.

I had no idea that congenital heart disease (CHD) was the number one birth defect. In fact, approximately eight per every 1,000 babies are born with a form of CHD and about 280 outwardly healthy babies are discharged from hospitals every year with unrecognized CHD.

We experienced serious emotional ups and downs after we learned about Dylan’s CHD diagnosis, waited for surgery, and then struggled through a difficult recovery. After going through this journey with Dylan, I feel very strongly about supporting other parents and caregivers during their hospital stay and the transition home.

Testifying Before the DC Council

I hope my family’s story can be an inspiration to other parents as Dylan’s life is truly a gift. I had vowed if Dylan survived his surgery that I would take all of the emotion I was feeling at the time and give back and advocate for pulse ox screenings.  Testifying in front of the DC Council on February 2, 2015 was one of those moments where I realized the true impact our family’s story could have on legislation and in helping other families through similar journeys. 

No mother should have to lose a child to CHD because an inexpensive and quick pulse ox screening was not performed after birth. It is vitally important that you ask that your baby receive a pulse ox screening.

If you happen to deliver in a state or the District of Columbia where pulse ox is not yet mandatory, ask your care team to administer a pulse ox screening prior to discharge from the hospital. In fact, I personally ask that Dylan get his pulse ox read every time we go to the doctor’s office for a sick or well-child visit. It does not hurt the children, costs virtually nothing, and can only give you peace of mind.

Advice for Parents of a Child with CHD

This is going to be scary at times and overwhelming and you may feel totally out of your element, but remember that your child is depending on you to make sure that they get the best possible care.  The doctors and nurses at children’s hospitals around the country are amazing and wonderful, but remember they have lots of patients and you only have one.

Be an advocate for your child – be involved in his or her care, ask as many questions as you need until you understand what is happening with your child’s care, and attend rounds in the morning as much as humanly possible to know what the medical plan is for the day. Other tips:
  • Ask if your baby will receive a pulse ox screening before being discharged from the hospital
  • Write EVERYTHING down, and I mean everything
  • Ask for business cards of new doctors who come in to check on your child
  • Ask your social worker for help navigating through this journey
  • Seek help and support where you can
  • Ask about Mended Little Hearts and get connected to other parents and caregivers who are going through similar journeys with their children. It’s much less scary when you know that you are NOT alone.
Michele Coleman is a wife and mother to two highly active boys under the age of five and works full time as Chief of Staff at Vornado DC. Additionally, she leads the local Mended Little Hearts chapter, a national non-profit that provides support to parents and caregivers of children with congenital heart defects. 

Wednesday, February 25, 2015

Children's National's Cardiac Surgeons Care for Patients and Their Families Around the Clock

In the final week of American Heart Month, we wanted to shed light on the life of a pediatric cardiac surgeon so we turned to Dilip Sri Nath, MD, of Children’s National Heart Institute. Dr. Nath has extensive training in complex congenital cardiac surgery and has worked at Children’s National Health System since 2010. He is Assistant Professor of Congenital  Heart Surgery at George Washington University. He also is a heart transplant researcher.

Service spans from sunup to well past sundown

Dr. Nath starts his day shortly after dawn and often works 10-12 hours. He visits patients in the Cardiac Intensive Care Unit, a 26-bed unit and one of the country’s largest units dedicated to the treatment of children with serious heart conditions. With about 530 cardiac surgical procedures a year, it’s one of the busiest centers on the East Coast.

During morning rounds at 7:30 am, Dr. Nath talks with fellow veteran surgeons as well as surgeons-in-training, cardiologists, and nurses to review patients’ progress.

“It’s the team spirit that we have that is ingrained in the culture,” Dr. Nath said. 

Throughout the day, he crisscrosses the hospital between operating rooms, the Cardiac ICU, his office, and meeting rooms. What Dr. Nath enjoys most about his job is the chance he gets to treat some of the most complex conditions young cardiac patients face.

He counsels families if the child is scheduled to have a procedure in a few hours or days. He makes sure everyone understands the process, any potential risks, and arranges for families to meet as many people involved with the surgery as possible – including anesthesiologists, nurses who manage the surgical room, and other team members.

Dr. Nath also counsels families after surgeries, explaining things like what they can expect from wounds and how they heal, and how their child’s mood and disposition may change.

“I want to give them some comfort in the fact that these guys have a game plan. We do our best,” he said, referring to his colleagues standing in a nearby operating room.

And then before he leaves the hospital, Dr. Nath advises fellow researchers on the status of their projects including assessing the use of life-sized models of a child’s heart using the latest 3D printing technology available at Children’s National. Dr. Nath and his colleagues use the technology that helps doctors and patients understand complex organs and health problems. They utilize this in conjunction with the simulation room to help fellow healthcare providers who care for children post-operation in the Cardiac ICU to understand how to manage their treatment.

He also revisits patients in the Cardiac ICU to check on their progress and reconnects with colleagues, reviewing cases.

Monday, February 23, 2015

Beads of Courage Helps Tell the Stories of Cardiac ICU Patients

Every patient at Children’s National Health System has a story and sometimes they choose to animate them through the Beads of Courage® program.

Beads of Courage® was brought to the Cardiac Intensive Care Unit (ICU) at Children's National in 2009 by art therapist Heather Stemas, M Ed, ATR-BC, LCPAT, and is a collaboration with art therapy, social work, and child life.

“The beads appeal to everyone and when families start to learn more about the symbolism of the beads, they become a prized possession,” social worker Heather Langlois said. Langlois manages the Beads for Courage® program at Children’s National and is in charge of supplies and enrolling families.

Children in the Cardiac ICU endure many procedures and the beads help capture every visit, test, and milestone.

“It’s a beautiful way to capture the child’s experience. Every yellow bead was a night in the hospital, every black bead was a needle poke,” Langlois said. “Kids who are born with congenital heart disease have a lifelong condition, and some of our kids are so young that this is a way to remember and a tangible way to tell their story.”

The beads even help parents process the level of care their children receive.

“A lot of the time the congenital heart disease patients come over and have surgery soon after their birth and so it’s often the parent enrolling in the program for their infant. For the parents, it helps them to see what their baby has been through. As time goes on they can show their child what they’ve been through,” Heart, Lung, and Kidney Child Life Specialist Judith Ross said. “It touches their heart and means so much to them. It gives the parents something to do that’s concrete and share with others what it means.”

Ross and Langlois admitted that older patients in the program remind them when they’re behind on receiving beads for procedures.

“I think the kids, once they’re older and know they’re getting beads, it helps them own their treatment a little more and understand their condition a little more. And that owning and understanding what to expect is really important,” Langlois said.

The beads represent the strength, stamina, and courage of what each child has been through with their illness. One of the first beads a child receives is an acorn-shaped bead. The symbolism of the acorn is that it grows into a mighty oak tree and that represents a patient’s strength.

“There’s also THE bead of courage, and it’s a glass bead, chosen by the patient that represents something very difficult and it represents that they came through on the other end,” Ross said.

Beads of Courage® Meanings:

  • Black – needle poke
  • Yellow – overnight stay in the hospital
  • Blue – clinic visit
  • Red – transfusion
  • Light green – test, scans, etc.
  • Aqua – tube insertion
  • Tortoise and glass – cardiac catheterization
  • Glass star – Cardiac ICU admission
  • Glow in the dark – echocardiogram
  • Purple – infusions (antibiotics, pressor support, etc.)
  • White – learning new medications 
  • Handmade glass heart – heart transplant

Langlois said the beads help kids talk about their condition with others, and one patient even took her beads to show-and-tell at school.

“Owning your story is best way to become your own best advocate,” she said.

Beads of Courage®, Inc. was started by Jean Baruch, an Arizona nurse, in 2003 to help patients and families cope with serious illnesses.

Wednesday, February 18, 2015

Winter Sports Safety Tips

According to the U.S. Centers for Disease Control and Prevention, snowboarding accounts for one-quarter of all sports injury-related emergency department visits in the winter. Sledding may seem tame by comparison, but it is also dangerous, causing more than 700,000 injuries a year.

For snowboarding, the most common injuries are broken bones and sprains, often to the wrist and elbow, due to athletes falling on outstretched hands as they try to catch themselves. As for sledding, 30 percent of injuries in this sport are caused by head collisions.

“A lot of winter sports seem to have a person operating on more than their own propulsion,” Children’s National Health System’s sports medicine pediatrician Nailah Coleman, MD, said. “Winter sports like skiing, snowboarding, and hockey rely on ice and snow to determine how fast an athlete is going, and this heightened speed is what makes them so dangerous.”

While the winter weather can be unpredictable, Dr. Coleman said there are a few ways to prepare your young athlete and avoid injury.

Injury prevention:
  • Wear layers
    • If you’re going to be sweating, make sure to wear layers that wick away sweat, or include a change of dry clothes
  • Follow the rules of the sport
  • Have appropriate equipment for the sport
    • Make sure equipment is not loose and fits you
  • Make sure the arena, slopes, etc., are checked for safety
  • Know your limits
    • Be sure your child does not do more than he or she is comfortable with, like attempting to snowboard a Black Diamond, when they should stick to the Bunny Hills
Winter sports also offer other challenges besides the heightened risk of injury. While playing outside in the cold for long hours, it’s important to know the signs of frostbite and hypothermia.

Dr. Coleman said before frostbite begins, athletes may experience frostnip. This is when the outer extremities feel cold, but don’t hurt. Once inside in the warmth, this cold feeling goes away in 10 or 15 minutes. Frostbite is much more serious because the tissue is frozen.

Frostbite signs:
  • Frozen tissue at extremities, fingers, toes, ears and nose
  • Skin appears pale
  • Unable to feel in affected area
  • Tissue may appear gray or blistered
Dr. Coleman said one way to prevent frostbite is to be wary of shoes that are too small, because you will not have proper blood flow to feet. If you suspect your child has frostbite, it’s important to seek treatment at the emergency department immediately.

Another cold weather risk is hypothermia, which occurs when a child’s temperature falls below normal due to exposure to cold temperatures.

Hypothermia signs:
  • Feel hands and feet get cold
  • More and more coldness all around you
  • Slurred speech
  • Shivering
  • Confusion
  • Lethargy
  • Impaired judgment
  • In some cases, people become so disoriented they begin to undress
“If you notice confusion in another person, it’s cold, and you’ve been out for a while, it’s time to call for medical attention,” Dr. Coleman said.

One more tip to keep in mind when enjoying winter sports is sun protection. Just because it’s cold, does not mean you can’t get burned. The sun can actually reflect off of snow, so make sure skin is covered or sunscreen is used.

Monday, February 16, 2015

Five Important Facts You Need to Know About the Measles

Measles is a viral infection that's highly contagious and serious for small children, but it is also preventable by a vaccine. Measles has the potential for severe complications and/or death, particularly in young children.

While measles was declared eliminated in the United States in 2000, it is still common around the world, with approximately 20 million cases and nearly 150,000 deaths each year. Measles can come into our country easily through visitors or returning Americans who have traveled abroad and brought it back.

Linda Fu, MD, MS, a pediatrician and Director of Immunization Quality Improvement at Children’s National Health System, talks about some of the most important things parents need to know about the measles.

Five important facts to know:
  • One in 10 people who are not vaccinated and are exposed to a single person with measles will become infected.
  • Measles spreads through the air when an infected person coughs or sneezes. In fact, even if you're not right next to someone with measles who’s sneezing or coughing, you can still be exposed since the live virus can linger in the air and also on surfaces two hours later.
  • High vaccination rates in the United States virtually eliminated measles by the year 2000. However, in recent years, we have seen an increase in measles cases in the U.S. 
  • In the United States, we’ve had more cases in 2014 than we've seen in over two decades. 
  • 2015 is shaping up to be worse than 2014 in terms of the number of measles cases.
How Can Parents Protect Children from the Measles?

The measles vaccination is a safe and effective way of protecting your child against measles, explains Roberta DeBiasi, MD, Division Chief of Pediatric Infectious Diseases at Children's National.

The Centers for Disease Control (CDC) recommends the MMR vaccine, which also includes protection against mumps and rubella, for all children at age 12–15 months, with a second dose before the start of kindergarten or at age 4–6 years old.  Two doses are also recommended for healthcare providers and post-high school-aged young people or students headed off to college.  Learn more about the CDC guidelines for the measles vaccination.

If you’re unsure if you or other family members are protected against measles, try to find your vaccination records or written documentation of measles immunity. Your doctor can also test your immunity through a simple blood test.

Learn more about measles.

Thursday, February 12, 2015

How My Son’s Complex Heart Conditions Changed My Plans and Taught Me to Live in the Moment

Leighann Marquiss’ son, Ryan, was born in February 2009 with a serious congenital heart defect known as Hypoplastic Right Heart Syndrome, and a rare condition where his heart developed outside his body. Find out how the family’s journey helped Leighann learn to live in the moment and Ryan to thrive.

When I found out at a 12-week ultrasound that my third child had a severe and life-threatening heart defect, I was devastated. This was NOT in the plan. I never expected having to make life or death decisions for my unborn child or having a baby with a non-functioning right ventricle and Ectopia cordis, meaning his heart was beating outside of his body.

This meant commuting to his bedside for the greater part of a year, watching him endure more than a dozen procedures and surgeries, watching him almost die on several occasions, finally bringing him home only to drag around medical equipment and spend hours with occupational and physical therapists. None of these things were in my plan.

I learned a lot about planning in 2009 and a lot about not planning. You see, we read and research and formulate plans for every area of our life thinking we can control outcomes, but one thing we can’t prevent through planning is congenital heart disease.  Ryan’s congenital heart disease confirmed for me that control is an illusion. The only way to find peace is to open our closed fist and release our perfectly laid plans to accept the life we’ve been given.

Accepting a CHD Diagnosis

For us, that meant consulting with pediatric specialists at Children’s National Health System. There, they formulated a comprehensive care plan to care for our son.

Once we accepted we couldn’t change our child’s diagnosis, we were able to move forward. Living in the Cardiac Intensive Care Unit with my son taught me that plans are fluid. They change day-to-day, moment-to-moment, and sometimes in a split second.

Ryan is now a thriving six-year-old who lives a typical life. He loves Teenage Mutant Ninja Turtles, pirates, playing with his friends and sisters, and watching baseball. He’s an extremely happy kid with an infectious smile. 

Learning to Live in the Moment

Releasing our plans doesn’t mean everything turns out perfectly. Nor does it make the path easy. What it does is free up the mental energy we’re using to fight our reality for more important things like living in the moment.

Accepting that I can’t control the big things, like my son having a congenital heart defect, has also helped me accept I can’t control things in my healthy children’s lives. It released me from the fear of failure and enabled me to just be their mom; to focus on relating with them and helping them grow into responsible individuals, through life’s ups and downs. It helped me understand that the need to control is really about fear: fear of failure, fear of inadequacy, fear of the unknown.  Living without fear - now that IS in the plan!

Guest Author:

Leighann Marquiss is an author, blogger, and speaker who uses her experiences to bring hope to others. She’s the author of Showing Heart: The True Story of How One Boy Defied the Odds, You Are Not Alone: An Insider’s Guide to Facing Prenatal Diagnosis, and Looking Toward the Cross: a 40-day Easter Journey for Families. She and her husband, Henry, have four children, and live in Western Pennsylvania.  She can be found regularly at www.leighannmarquiss.com.

Monday, February 9, 2015

How Children Can Become Heart Healthy Through Nutrition

Food and Nutrition Services Clinical Nutrition Manager Jessica McGee MS, RD, CSP, LD, CNSC, writes about heart healthy nutrition for kids. 


About one-third of children and adolescents in the United States are considered overweight or obese. Obesity puts a lot of stress onto a child’s heart. Health consequences to this epidemic such as type 2 diabetes, elevated “bad” cholesterol levels (LDL), and high blood pressure, can improve through nutrition.

 Introducing a healthy variety of foods to children and involving them in the preparation is a creative and effective way to enrich the health of kids and families. Many of us have heard that healthy eating and living is not about the latest fad or an unrealistic diet, but a lifestyle change. This is absolutely true! By teaching your children nutritious habits now, you are equipping them for a healthy future as an adolescent and adult. Start that future today by following these simple heart-healthy tips:

Go for the Whole Grain

Whole grains contain fiber which helps lower LDL cholesterol levels. Choose foods with “whole grain” as the first ingredient on the food label. Oats are high in soluble fiber and while most commonly consumed as oatmeal, they are easily incorporated into smoothies, casseroles, burgers, cookies and other baked goods. Other whole grain options are popcorn, barley, quinoa, and brown rice.

Color Your Plate With Fruits and Veggies For a Healthy Heart 

Fill half of your plate with fruits and vegetables. The fiber in fruits and vegetables may reduce risk for heart disease. Eating a variety of fruits and vegetables also can protect against certain forms of cancers. This is an exciting food group for kids as there’s an entire rainbow of colors and variety to choose from.

If your child refuses to eat anything that grows out of the ground, don’t feel defeated, it’s normal! It can take multiple occasions offering a new food before a child (and some adults) will even taste it, let alone like it. Offering the fruits and vegetables your family likes alongside new healthy foods may increase diet variety over time.

You can incorporate more fruits and veggies by substituting one snack-sized cup of applesauce for a ½ cup of oil while baking, for example. Or, add spinach in your spaghetti sauce and load up your pizza and sandwiches with greens and pineapple.

Face the (Good) Fats

Some fats are heart healthy like omega-3 fatty acids and monounsaturated fats, which can lower cholesterol levels. Good sources of omega-3 fats:
  • Fatty fish (salmon, lake trout, mackerel, and albacore tuna)
  • Canola oil
  • Walnuts
  • Flaxseed - a great addition to yogurt, smoothies, and baked goods but must be ground for our bodies to digest the healthy fat.
Monounsaturated fats are found in nuts, avocados, peanut butter, and olive oil. Even healthy fats are still energy dense and should be eaten in moderation providing about 25-35 percent of total energy intake in children and adolescents.

Heart Healthy Recipe Idea

Blueberry Banana Smoothie Pops

Use this simple recipe as a fun way to incorporate variety into your family’s diet:

Ingredients:
  • 1 cup blueberries (frozen or fresh) 
  • 1 large ripe banana 
  • 1 cup fat-free milk (or use almond milk, etc.) 
Directions:
  1. Blend ingredients for 60-90 seconds. 
  2. Pour into molds and freeze overnight. 
*You can add a 1-2 tsp. of honey or agave nectar for extra sweetness.
*Try substituting the blueberries for raspberries, strawberries, or a fruit of your preference. *Experiment with this recipe by adding spinach or avocado.

More important than any education dietitians provide is the unique opportunity parents and caregivers have to lead by example at home on a daily basis. Family involvement in nutrition, like growing a garden, shopping and preparing foods, or sharing meals together are all components of heart healthy living and they’re fun!

For more detailed information on dietary guidelines for the pediatric population or adults visit www.heart.org or www.choosemyplate.gov.