DiversityNursing Blog

Meredith Melnick and Lilly Workneh via www.huffingtonpost.com 

The Huffington Post is launching “Better Black Health” this week to address the ever-increasing health disparities in the black community. Their editorials hope to raise awareness, create discussions and discover ways to fix these disparities. Please read on for more information.

The inequalities African Americans battle are plenty and severe -- but the widening health gap is arguably among one of the most crucial and inadequately addressed concerns.

Better Black Health hopes to help change that.

Today, HuffPost's Black Voices and Healthy Living are launching a new editorial initiative that aims to dissect disparities in health and discuss ways to combat them.

Better Black Health seeks to raise awareness around the health gap and spotlight efforts to make the medical field more inclusive. We hope, through our reporting, to inspire efforts to engage communities in practicing healthy habits and empower people to make wellness a priority.

During Breast Cancer Awareness Month, we spoke with Dr. Karen M. Winkfield, a Harvard affiliated oncologist about disparities in breast cancer survival rates. Nationally, she said black women are 40 percent more likely to die from breast cancer following a diagnosis, compared to white women. In some cities, she said that disparity can jump to as high as 111 percent.

But that wasn't the most shocking discovery we made during our interview: Winkfield revealed that she was the only black radiation oncologist in Boston -- and only one of three black radiation oncologists in all of New England. Her career experiences may be not common among black men and women, but her story, and her voice, should be shared as a way to help inspire others.

Looking at the larger scale, African Americans make up just 5 percent of clinical trial participants. They have the highest cancer death rate and shortest survival time of any ethnic group in the United States, according to the American Cancer Society. African Americans are 20 times more likely to have heart failure before the age of 50, and the list goes on: when it comes to diabetes, early onset Alzheimer's and a host of other conditions, the black community fares worse.

When we talk about structural injustice, we cannot forget our health institutions. From clinical research to quality hospital access to diversity in the very profession of medicine, representation of African Americans is woefully low.

As the Black Lives Matter movement sweeps the nation, it would be remiss to not use this time as a moment to discuss not just the death, but the preservation and physical conditions of black bodies. Conversations can't end at violence and injury -- instead, we must also acknowledge that health, wellness and the security of quality health care are important aspects of a life well-lived.

Better Black Health is committed to carrying on that conversation -- and we hope you join the discussion.

Jennifer Thew, RN, for HealthLeaders Media

Have you ever been at work and found yourself having a repeated conversation about the same topic over and over again? Do some days feel like dejavu? Well, you are not alone. The Nursing profession has issues that have been around forever and these professionals want to discuss ways of moving towards the future instead of being held back by its past.

A dean of nursing, a CNO, and a former staff nurse share their thoughts on issues that have long plagued nursing, and discuss how to create a more cohesive profession.

Cherry Ames, The English Patient, and Nurse Jackie are all well-known, fictional works that depict nurses. Yet, if I had to choose the one that most accurately represented our profession, I'd actually go with a write-in candidate— the movie Groundhog Day. Yes, the Bill Murray movie. Yes, I know none of the characters are nurses.

I'd choose it because Murray's character is forced to repeat the same day over and over until he's finally able to learn from his mistakes and break the cycle. I think the nursing profession suffers this same fate at times. For decades, we've been going around and around on issues such as educational preparation, staffing levels, and even proper hand washing.

Unlike Bill Murray's vexed, but persistent character, we can't seem to come to a resolution that will break the cycle of repetition.

I spent the majority of my nursing career as a staff nurse, with a brief foray into management, so when the book, The Nurse's Reality Shift: Using History to Transform the Future, crossed my path, I was eager to talk with its author, Leslie Neal-Boylan, PhD, RN, to get some insight on how nursing can move forward to the future rather than continuing to be bogged down by the past.

For our discussion, Neal-Boylan, who is dean and professor of the College of Nursing at the University of Wisconsin-Oshkosh (my alma mater), we focused on a few issues that persist in nursing: staff shortages and disunity.

After we spoke, I caught up with Kathy Bonser, MS, RN, vice president and chief nursing officer at SSM Health DePaul Hospital in St. Louis, to get a nurse executive's take on the same issues:

Shortages: A Thing of the Past, and of the Future

Since the 1930s, nursing has gone through cycles of shortages and surpluses. While the RN shortage predicted to occur around 2014 was muted by the 2008 economic crash that prevented seasoned nurses from retiring, the Health Resources and Services Administration says about one-third of the nursing workforce is approaching typical retirement age. If this group does retire, we'll need to educate new nurses to fill the open positions.

Fortunately nursing school enrollment is up, says the American Association of Colleges of Nursing. However, qualified candidates are being turned away—68,938 from baccalaureate and graduate programs in 2014—and one of the contributing factors is a shortage of nursing faculty. According to the association's survey on vacant faculty positions, there were 1,236 vacant full-time faculty positions for the 2014–2015 academic year.

"In academe, shortages of qualified faculty are a big challenge," says Neal-Boylan. "More and more people want to be nurses, which is wonderful, but having doctorally prepared nurses is a challenge. And certainly the DNP has helped with that, but it really was not designed for a nurse educator per se in academe."

While Bonser has not yet seen a large shortage of nurses at her facility, she says that a faculty shortage could indeed affect the number of nurses coming into the pipeline. And if hospitals choose to go the route of only hiring BSN-prepared nurses, they may feel the pinch sooner rather than later.

At SSM, they've "been pretty successful recruiting the graduate nurses because some of our competitors in the market made that choice to only hire BSN," she says. "We've stayed committed [to hiring ADN nurses] because of relationships that we have with many of our community colleges that surround our hospitals."

I graduated with a BSN in 1998, at the beginning of a nursing shortage. My career advice to new nurses is to be flexible and be willing to move to find a job. My advice to nurse executives looking to fill nurse vacancies is to extend your recruitment efforts nationwide rather than just locally.

Disunity: 3.1 Million Nurses Can't Agree

Nursing administration and staff nurses often don't see eye-to-eye on major issues and a gap the size of the Grand Canyon has opened between them.

"Because of how we've set things up in nursing, there's not a lot of opportunity for those two groups to interact and to appreciate and understand what the other is doing for nursing and to really maximize what we could do if we were much more cohesive," says Neal-Boylan.

This can result in "…people who are very much in the position of making a lot of decisions for the profession and might not necessarily be close anymore to what the actual needs are of the nurse who's taking care of the patient," she says.

Bonser says she does not feel this disconnect at SSM DePaul, but she agrees that nurse executives need to stay attuned to what direct care nurses need. She even encourages giving those at the point- of-care the power to make decisions. "From an organizational perspective… I've got to have the people at the bedside making decisions about how the work is done because I can't possibly know that," she says.

In addition to a shared governance model, executives at SSM DePaul do monthly leadership rounds in all of the hospital's departments. "That's how we stay connected to our front line staff and understand and learn from their perspective what is satisfying them in their work, what's making their work harder, and what barriers do I, as a leader, need to help remove for them."

I have to say that this topic cuts both ways. I've heard many staff nurses say they have never felt valued by a CNO or nurse manager, but I also wonder if these same nurses extend the respect they crave to their executives.

When something does go right or a good decision is made do they thank their unit director or other nurse executives? Do they have the moral courage to speak up and articulate a problem in a professional way so it can be solved? If not, they probably should, because as I learned from a CNO I once worked with, "a closed mouth cannot be fed."

In order for things to change, you have to ask for what you need in a respectful, articulate manner. Working to make respect flow back and forth among nurses of all positions is one way I think we can to start building a united profession.

Think of all that nurses could accomplish if they could set a unified agenda and speak with a unified voice. We could truly change the health of the nation if all 3.1 million of us acted as one.

Written by Peter Lam www.medicalnewstoday.com

I think many parents would agree that high school starts too early in the morning. Some may even say students probably sleep through the first class of the day. The CDC has conducted a massive study and found that students should not be getting up so early. Maybe this study will help change the start times of high schools.

Morning can often be a challenging period for tired students as they prepare themselves for the coming day, but should they be getting up so early?

According to a study published in the journal Pediatrics, the answer is no.

Sleep is particularly critical for teenagers, but many do not get enough. Medical News Today earlier reported how the number of hours slept per night has decreased among teenagers in the US over the past 20 years.

Between 8.5-9.5 hours of sleep per night are recommended for teenagers. However, the proportion of high school students who fail to get enough sleep is estimated to be 2 out of 3 and has remained like this since 2007.

To investigate the role of school times on students' sleep patterns, researchers from the Centers for Disease Control and Prevention (CDC) and the US Department of Education reviewed data collected from the 2011-2012 Schools and Staffing Survey. Nearly 40,000 public, middle, high and combined schools were reviewed in the study.

They found the majority of middle and high schools were starting the day too early. Fewer than 1 in 5 schools began at the recommended time of 8.30 am or later.

Lead author Anne Wheaton, PhD, an epidemiologist in the CDC's Division of Population Health explains the importance of sleeping. She says:

"Getting enough sleep is important for students' health, safety, and academic performance. Early school start times, however, are preventing many adolescents from getting the sleep they need."

Other key findings from the study include:

• 42 states reported that 75-100% of the public schools in their respective states started before 8.30 am
• The average start time was 8.03 am
• The percentage of schools with start times of 8.30 am or later varied greatly by state. No schools in Hawaii, Mississippi, and Wyoming started at 8.30 am or later; more than 75% of schools in Alaska and North Dakota started at 8.30 am or later
• Louisiana had the earliest average school start time (7.40 am), while Alaska had the latest (8.33 am).

Study strongly recommends schools start later

The study concludes by strongly recommending schools start later, but also warns other factors must be addressed to have a significant effect.

The study advises health care professionals, especially those working in schools, should be raising awareness of the importance of adequate sleep. Earlier this year, MNT reported how teenagers' sleep was being "adversely affected" by media devices.

To combat this, the study recommends pediatricians take an active approach supporting and educating families on healthy sleeping habits. In particular, parental involvement in setting bedtimes and supervising sleep practices is encouraged, such as the use of a "media curfew."

The decision of school start times are not determined at federal or state level but at district or individual school level. The data utilized was taken between 2011-2012, so further research is required to see if schools have heeded the recommendation, and if so, what effect this has had.

Sleep can easily be neglected in today's world. Last year, the CDC described the issue of insufficient sleep in society as a "public health epidemic." The US Government has sought to address the issue of insufficient sleep by selecting it as one of the new topics of the Healthy People 2020 initiative.

By Lena H. Sun

www.washingtonpost.com

Yelp and ProPublica are teaming up to provide consumers with emergency room wait times, nursing home fines, and dialysis treatment reviews. All of this information has been collected from 4,600 hospitals, 15,000 nursing homes, and 6,300 dialysis clinics in the U.S. Each quarter this information will be updated.

Yelp is adding a ton of health-care data to its review pages for medical businesses to give consumers more access to government information on hospitals, nursing homes and dialysis clinics.

Consumers can now look up a hospital emergency room's average wait time, fines paid by a nursing home, or how often patients getting dialysis treatment are readmitted to a hospital because of treatment-related infections or other problems.

The review site is partnering with ProPublica, a nonprofit news organization based in New York. ProPublica compiled the information from its own research and the Centers for Medicare and Medicaid Services. The data is for 4,600 hospitals, 15,000 nursing homes, and 6,300 dialysis clinics in the United States, and it will be updated quarterly.

Much of the information about hospitals, for example, is available on Medicare's Hospital Compare Web page. But Yelp executives say the information is sometimes difficult to find and hard to sift through.

Does Yelp really think people scrolling through taco restaurant reviews are then going to check out hospitals and nursing homes?

"Many people think of the Yelp platform for finding great restaurants and hotels, and it certainly is," said Luther Lowe, Yelp's vice president for policy. But businesses in the health category make up 6 percent of reviewed businesses, and executives hope that with additional data, those reviews will grow.

"We're taking data that otherwise might live in some government pdf that's hard to find and we're putting it in a context where it makes sense for people who may be in the middle of making critical decisions," Lowe said.

Scott Klein, ProPublica's assistant managing editor, said millions of Yelp users will also have access to the news organization's data. In return, the news organization will have bulk access to all of Yelp's health-care reviews to use in research for news stories. ProPublica has not been given personal information about Yelp's users other than what is available on Yelp, he said.

Consumers have always been able to review medical businesses using Yelp's star-rating system. Those ratings will continue to be based on consumer reviews. What's different now is the additional data that will pop up.

Yelp said it relied on ProPublica's expertise in choosing which metrics to show on Yelp and how best to explain the information to consumers.

The hospital data shows the ER wait time, the quality of doctor communications with patients and the level of noise in patient rooms, all of which is based on patient satisfaction surveys conducted for Medicare.

The nursing-home information includes fines paid for serious deficiencies and any payment suspensions because of poor performance.

Data for dialysis clinics includes information about how often kidney patients were readmitted to the hospital and the clinic's death rate.

People viewing the data can hover their cursors over the information icon on the page to pull up additional explanations.

www.risingafrica.org

This incredible young man, Tony Hansberry II, is a 14-year-old student who used an endo stitch in a way no one has ever done before and the results are a game changer. 

A Jacksonville researcher has developed a way of sewing up patients after hysterectomies that stands to reduce the risk of complications and simplify the tricky procedure for less-seasoned surgeons.

Oh, and he’s 14 years old (Tony Hansberry II).

He says that his remarkable accomplishments are merely steps toward his ultimate goal of becoming a University of Florida-trained neurosurgeon.

“I just want to help people and be respected, knowing that I can save lives,” said Tony, the son of a registered nurse mom and an African Methodist Episcopal church pastor dad.

The seeds of his project were planted last summer during his internship at the University of Florida’s Center for Simulation Education and Safety Research, based at Shands Jacksonville.

To understand why a teenager would be a hospital intern, it’s important to know that Tony is a student down the street from Shands at Darnell-Cookman Middle/High School, a magnet school geared toward all things medical. (Students, for example, master suturing by the eighth grade.)

At the simulation center, where medical residents and nurses practice on dummies, the normally shy student warmed up to the center’s administrative director, Bruce Nappi. In turn, Nappi, a problem-solver with a Massachusetts Institute of Technology aeronautics degree, found someone willing to learn.

One day, an obstetrics and gynecology professor asked the pair to help him figure out why no one was using a handy device that looks like a dipstick with clamps at the end, called an endo stitch, for sewing up hysterectomy patients. In other procedures, it proved its worth for its ability to grip pieces of thread and maneuverability.

What Tony did next is so complicated that the professor who suggested the project has to resort to a metaphor to explain it: “Instead of buttoning your shirt side to side, what about doing it up and down?” Brent Seibel said.

Here’s the literal explanation: The problem was that the endo stitch couldn’t clamp down properly to close the tube where the patient’s uterus had been. Tony figured that by suturing the tube vertically instead of horizontally, it could be done. And he was right.

“It was truly independent that he figured it out,” Nappi said, adding that a representative for the device’s manufacturer told him that the endo stitch had never been used for that purpose.

Tony’s unpracticed hands were able to stitch three times faster with the endo stitch vs. the conventional needle driver. Further study may prove whether the same is true for more experienced surgeons, Seibel said.

In addition to cutting surgical time, the technique may help surgeons who don’t do many hysterectomies because it’s easier to use the endo stitch, he added.

Tony often speaks in the highly technical, dispassionate language of doctors. In that respect, he’s not the exception but the rule at Darnell-Cookman, said Angela TenBroeck, the school’s medical lead teacher. But he has surged ahead of others when it comes to surgical skills.

“I would put him up against a first-year med student,” she said. “He’s an outstanding young man, and I’m proud to have him representing us.”

www.nursingcenter.com

The U.S. Centers for Disease Control and Prevention reported a low HPV vaccine rate amongst teens. Other recommended teen vaccines such as Tdap and MenACWY have higher and less concerning rates. Cost isn’t to blame because private insurers cover it and government programs provide it free to low-income families. Some believe doctors are to blame, believing they are not taking it seriously enough and not recommending this vaccine as much as the others.

Four out of 10 girls and six out of 10 boys, aged 13 to 17, have not started the recommended human papillomavirus (HPV) vaccine series, according to survey results published in the July 31 issue of the U.S. Centers for Disease Control and Prevention's Morbidity and Mortality Weekly Report.

Data for the latest report came from the CDC's 2014 National Immunization Survey-Teen. The survey included 20,827 teens aged 13 to 17 in 2014. The latest estimates show that 60 percent of adolescent girls and 42 percent of adolescent boys had received one or more doses of HPV vaccine by 2014. This was an increase of 3 percent for girls and 8 percent for boys from 2013.

States that significantly increased HPV vaccinations include Georgia, Illinois, Montana, North Carolina, and Utah. The report also noted large increases in Chicago and Washington, D.C., which contributed to the overall progress. Single-dose HPV vaccination coverage is highest in Rhode Island, where 76.0 percent of girls have received at least one shot, and lowest in Kansas, where only 38.3 percent of girls have started the series. In Washington, D.C., 56.9 percent of girls have received the full series of three shots, compared with just 20.1 percent in Tennessee.

The problem isn't the cost of the HPV vaccine, as private insurers are required to cover it without co-pay and government programs are available to provide it free to children in low-income families, Anne Schuchat, M.D., director of the CDC's National Center for Immunization and Respiratory Diseases, told HealthDay. She feels the main roadblock to progress is that doctors are not making a strong enough recommendation to parents in favor of the HPV vaccine. The CDC is urging doctors to "recommend HPV vaccines in the same way and on the same day you recommend other routinely recommended teenage vaccinations," Schuchat said. "A provider recommendation is really important, and parents are waiting for that on those doctor visits."

GILLIAN MOHNEY 

Contributor: Marissa Garey

abcnews.go.com

When young kids return from a water park, you expect to see smiling faces. However, the mother of two boys, ages 5 and 7, was distressed when she found her sons with second- and third-degree burns. Daycare workers neglected to apply sun protection for the boys as they were exposed to high temperatures for hours at the water park. As for repercussions, the daycare is no longer operating, and the two brave boys are expected to recover with no permanent scarring.

Pictures of two Oklahoma boys with second- and third-degree burns have started to make national headlines after they spent hours at a water park without sun protection, according to their mother.

Shaunna Broadway was horrified to find out her fair-skinned sons, ages 5 and 7, were left without sun protection during a day care trip to a nearby water park.

Broadway said that daycare workers said that they didn’t have sunscreen for the boys and the young boys did not keep their shirts on at the park. The boys ended up in the hospital with second- and third-degree burns and were eventually airlifted to a Texas hospital for further treatment.

A video released by Broadway shows the boys screaming in pain as they receive treatment. She told ABC News she was heartbroken to see her sons injured after they spent hours in triple-digit temperatures.

“It’s been really hard to see them go through this,” she said.

The Oklahoma Department of Human Services confirmed to ABC News that the daycare center has ceased operations.

Experts say this case clearly shows how dangerous a simple trip outdoors can be for those without sun protection.

Dr. Barney Kenet, a New York-based dermatologist, said the boys were likely susceptible to severe sun damage because they appear to have very fair skin.

“Those boys are very fair and [one has] red hair, they are as fair as they can be,” said Kenet. “In high-sun community and so you can get a burn … in 15 minutes when you’re this fair.”

He guessed spending an hour or more in the sun with no protection could lead to the severe burns seen on the boys in the pictures released by Broadway.

He said while the burns look severe in the pictures, the boys will likely not suffer permanent damage.

“The future however is good,” said Kenet. “Both boys will heal up quite well ... it’s highly unlikely they will have scarring.”

He did warn that the boys could be at high risk for health complications in the future as a result of the severe burn.

“Unfortunately severe burns in childhood in this natures are an independent risk factor for skin cancer later in life,” explained Kenet.

Kenet said it’s key to apply broad spectrum sun block every two to three hours when in the sun and to try and avoid being outdoors during peak hours. He said if rambunctious kids refuse to stay indoors parents can double up on sun block and long sleeve rash guards to give protection to vulnerable children.

“They have pristine, very fair and unclimatized skin,” Kenet said of the two boys. “Baby skin, it’s very fair. They have no tan and no protection.“

The youngest patient to receive a double-hand transplant is 8-year-old Zion Harvey. A 40 person medical team at The Children's Hospital of Philadelphia performed an 11-hour operation to attach old and new bones. Then the medical team connected Zion's arteries, veins, muscles, tendons, and nerves.

The young boy has had trauma beyond his years yet, when he speaks he is so mature and upbeat. You almost forget he has had both hands and feet removed and has had a kidney transplant, all before the age of 8.

Watch here to see this impressive boy's interview. Zion looks forward to playing with his sister and throwing a football. Before his interview ended, he asked his relatives to stand up and he said to them, "I want to say to you guys, thank you for helping me through this bumpy road." We wish him smooth travels on the rest of his road!

By JANE E. BRODY

Contributor: Marissa Garey

NYTimes 

We all know someone who snores; yet, it is less common to know a child who snores. For 3 and ½ year old, Barrett Treadway, snoring is caused by sleep apnea. While this condition is most often diagnosed in overweight adults, it remains possible for children to suffer from obstructive sleep apnea. According to experts, between 1 and 3 percent of children have this condition.

Sleep apnea, if untreated, can impair normal development. A child’s memory, cognitive development, ability to learn efficiently, I.Q., and more can be affected. Treatment for this condition has proven to be effective, but there are still some long-lasting impacts. Dr. David Gozal warns, “The presence of snoring should not be viewed as a normal feature of sleeping children.” For those of you whose children snore, be aware that snoring can be associated with risks, and it can be properly treated.

Barrett Treadway, now 3½, has never been the best of sleepers, but her sleep grew increasingly worse in the last year and a half. She gets up several times a night, often climbs into her parents’ bed and creates havoc with their nights.

“We’ve known for a long time that she snores, but until a mother-daughter trip in May when we shared a bed, I didn’t realize that this was not simply snoring,” her mother, Laura, told me. “She repeatedly stopped breathing, then started again with a loud snort that often woke her up and kept me up all night.”

Barrett has sleep apnea, a condition most often diagnosed in adults and usually associated with obesity. But neither of those attributes describes Barrett, who is young and lithe, although the condition is somewhat more common in overweight children.

In most cases, the problem results when, during sleep, the child’s airway is temporarily obstructed by enlarged tonsils or adenoids or both — lymphoid tissues in the back of the throat — hence the name obstructive sleep apnea. When breathing stops for 10 or more seconds, the rising blood level of carbon dioxide prompts the brain to take over and restart breathing, typically accompanied by a loud snore or snort.

Rarely, a child may have what is called central sleep apnea, in which the brain temporarily fails to signal the muscles that control breathing.

Experts say that between 1 percent and 3 percent of children have sleep apnea that, if untreated, can disrupt far more than a family’s restful nights. Affected children simply do not get enough restorative sleep to assure normal development.

If not corrected, the condition can result in hyperactivity and attention problems in school that are often mistaken for attention deficit hyperactivity disorder (A.D.H.D.) and sometimes mistreated with a stimulant that only makes matters worse.

Affected children can be excessively sleepy during the day. Barrett’s preschool teachers have said she is hard to awaken from her nap. A child’s memory, cognitive development, ability to learn and I.Q. can suffer as well. Daytime irritability is not uncommon. Barrett’s parents report that her low tolerance for frustration when she can’t get her way has worsened in recent months.

However, once the condition is effectively treated, the child’s behavior can improve drastically, and most young children are able catch up on developmental milestones that might have been delayed.

Nonetheless, there can be subtle long-lasting effects, Dr. David Gozal, then at the University of Rochester, and colleagues reported in 2008 in Seminars in Pediatric Neurology. The research found that “children who snored frequently and loudly during early childhood were at increased risk for lower academic performance later in life, well after snoring had resolved.”

Dr. Gozal, a pediatric sleep specialist now at the University of Chicago Medical Center, warned that “the presence of snoring should not be viewed as a normal feature of sleeping children, since it indicates the presence of increased upper airway resistance.”

In 2008, he reported that 1 percent to 9 percent of infants and toddlers and 3 percent to 5 percent of children aged 9 to 14 habitually snore. Even if a snoring child’s sleep is not disrupted, he explained, “snoring is, in fact, associated with a higher risk for neurobehavioral deficits.”

For example, multiple studies have found that hyperactivity and inattentive behavior often affect children who snore habitually, as well as those with obstructive sleep apnea, but behavioral problems improve following surgery to remove the obstructing tissue.

In more severe cases of obstructive sleep apnea, with its breathing pauses and disrupted sleep, Dr. Gozal wrote, the combination of fragmented sleep and a diminished supply of oxygen can result in hard-to-reverse injury to “multiple target organs and systems” if the problem is left untreated or treatment is unduly delayed.

Adenoids and tonsils typically enlarge from infancy through childhood, then shrink during adolescence and adulthood. If during early childhood these tissues grow faster than the bones of the nose and throat, they can reduce the size of a child’s upper airway, making it difficult for the child to breathe when asleep.

Both genetics and ethnicity play a role in a child’s risk of developing obstructive sleep apnea. The combination of genes that determine facial structure and the thickness of oral tissues play a role, and the condition is more common among blacks than whites, even when body weight is taken into account.

In an interview, Dr. Gozal said a proper diagnosis should always precede surgery. He suggested that pediatricians routinely ask parents six questions at every well-child visit:

■ Does your child stop breathing during sleep?

■ Does your child struggle to breathe while asleep?

■ Do you ever shake your child to make him or her breathe again when asleep?

■ How often does your child snore?

■ Do you have any concerns about your child’s breathing while asleep?

■ How loudly does your child snore?

If sleep apnea is suspected, Dr. Gozal said, the next step should be a sleep study to confirm or rule out the diagnosis before considering surgery. “A clinical assessment and physical exam by the pediatrician or an ear, nose and throat specialist is insufficient to make a diagnosis,” he said.

While surgery to remove overly enlarged tonsils and adenoids is most often used to correct sleep apnea in children, milder cases may respond to the use of a steroidal nasal spray and oral anti-inflammatory medication, Dr. Gozal and colleagues have reported.

Even when properly treated, obese children may still have the problem and, without significant weight loss, may need to use a mask attached to a positive airway pressure (PAP) machine to help keep their airways open during sleep.

Although children may have difficulty adjusting to the bulky mask, it can significantly improve their behavior and quality of life, even if used just three hours a night, Carole L. Marcus, a professor of pediatrics at the Children’s Hospital of Philadelphia, and her colleagues reported in 2012 in The American Journal of Respiratory and Critical Care Medicine.

Eleanor Goldberg and Marissa Garey

www.huffingtonpost.com 

Not many people have instilled a social change like Dwayne Szot, an artist from northern Wisconsin. Dwayne Szot is far from a typical artist—he is an innovative artist who creates work that allows kids with disabilities to complete simple childhood activities. Despite the situation they’ve been given, Szot’s work enables kids with disabilities to paint, draw, blow bubbles, and more. For a kid like Madison, an 8 year old diagnosed with spinal muscular atrophy, Szot’s work has proven to be life changing. Inspired by his foster siblings with disabilities, Szot strives to help kids experience and enjoy life to it’s fullest all over the world.

When Madison was first diagnosed with spinal muscular atrophy, her doctor didn’t know a whole lot about the genetic condition. She flat-out told Madison’s fearful parents that their baby wouldn’t make it to her 2nd birthday.

“That was pretty tough,” Jennifer Miller-Smith, Madison’s mom, told The Huffington Post.

Seven years later, while the second-grader relies on a wheelchair and faces the disease’s degenerative effects, Madison is “thriving,” her mom proudly shared. A lot of that is thanks to Dwayne Szot, an artist who has committed his career to inventing tools that enable kids with disabilities to paint, draw, blow bubbles –- pretty much do anything any typical child gets to do.

Before Madison met Szot, an innovator based out of a small fishing town in northern Wisconsin, the 8-year-old often felt frustrated and helpless. While she wanted more than anything to play with her friends, she was often relegated to the sidelines due to her condition.

SMA causes the body’s muscles to weaken over time, making it impossible to perform such simple tasks as flipping a switch. Those with SMA type 2, like Madison, will never be able to walk or stand up, according to the U.S. Library of National Medicine.

But when Madison met Szot at an SMA conference in Los Angeles two years ago, her world opened up in a way she had always hoped, but wasn’t sure was possible.

Since the late 1980s, when Szot unveiled the first edition of his painting wheelchair, the artist has spent his days building upon his current inventions and developing new ways to engage with kids with limited physical ability.

“What I do in the studio is create a means for a full completeness of experiences,” Szot told HuffPost at an event in west Miami in April. “It’s not just about mark making. It’s about that opportunity to experience and enjoy life to it’s fullest.”

Szot knew from the time he was a child in the foster system in the Midwest that he would pursue a career in art. But it was one that wouldn’t involve fame or fortune.

“I knew growing up that I was never going to be this kind of art guy who put paintings on the wall in a museum,” Szot said. “I wanted to be the kind of art guy who made something that was going to create social change –- that was going to make a difference. And there’d be a usefulness to what I did as an artist.”

Szot was particularly inspired by his foster siblings with disabilities, and how they adapted together to make their everyday routine work.

He recalled how he and the other kids were always late for the school bus. To help his sister with cerebral palsy get there just a bit faster, he started dragging her along in a wagon.

It was those childhood experiences, and simple adaptations, that inform his work today.

Szot, for example, first developed his art roller with a National Endowment for the Arts grant nearly 30 years ago. It involves attaching PVC pipe and a print plate to the base of a walker or a wheelchair. After it’s filled up with paint, the user just rolls and can create a massive mural.

He uses similar technology for the Walk Chalk and Roll, which allows kids in wheelchairs to draw on the sidewalk with chalk.

“It taught our kids that they can do sidewalk chalk and they can create these magnificent paintings and such, with just a little bit of adaptability,” Miller-Smith said of Szot’s tools. “Now that we connected something to [Madison’s] wheelchair -- now she can do it.”

When he’s not toiling in his workshop, Szot takes his tools on the road, both around the U.S. and abroad, to show children with a range of conditions that they no longer need to live their lives as bystanders.

Szot’s inventions have taken him as far as Saudi Arabia and Mexico. But this year, his workshops are all based in the U.S. He’s making stops in Detroit, Chicago and Portland, Maine, among other major cities.

This past spring, Szot set up shop at the Patricia & Phillip Frost Art Museum at Florida International University, which allowed Madison to reconnect with the man who changed her life on her own turf.

Together with Miami-Dade Department of Cultural Affairs, the Children's Trust and All Kids Included, the event invited 200 kids, both those with disabilities and without, to play together using Szot’s tools.

For parents, participants and museum staff seeing Szot’s work for the first time, the experience was eye-opening.

“I use the word ‘genius’ very rarely,” Jordana Pomeroy, the museum’s director, told HuffPost. “And I think it’s very appropriate in describing the work that [Szot] does with kids with physical challenges.”

Newly diagnosed families that are just beginning to grasp what their children’s conditions mean for the long term felt particularly hopeful.

Kaden, 14 months old, was diagnosed with SMA about half a year ago. He’s never crawled or rolled over and will never walk.

Just playing with a toy is a challenge for him since he has to use nearly every muscle to prop himself up and keep himself from falling over, his mom, Katie Myers, said.

But after watching Kaden spend the afternoon painting murals and playing with an adaptive kite, Myers said she felt reassured about her baby’s prospects.

“Being able to see how much he loves life and loves the world, and wants to be a part of the world -- it changes our whole perspective," Myers said. "Despite the situation he’s been given, the world is his.”