DiversityNursing Blog

Company Designs Dolls With Hearing Aids, Birthmarks So All Kids Can Have A #ToyLikeMe

Posted by Erica Bettencourt

Wed, May 20, 2015 @ 02:32 PM

By Kimberly Yam

www.huffingtonpost.com 

o DOLLS 570 resized 600A toy company is taking a step in the right direction. 

After parents of children with disabilities called for more diversity in kids' toys through social media campaign, Toy Like Me, MakieLab, a 3-D-printing toy company based in London, announced last week that it will help make that a reality.

Inspired by pictures on the Toy Like Me Facebook page of "hand-modified toys" with canes, wheelchairs and other additions parents made to reflect their kids' disabilities, the company has begun designing inclusive accessories, like hearing aids and walking aids, to go with their 3-D-printed, customizable "Makies" dolls 

The first wave of products has been produced and is ready to hit the online store, a press release indicated.

The company is also testing made-to-order facial birthmark accessories, and is working on a toy wheelchair, a k-frame walker and a longer cane, according to Buzzfeed. 

The dolls themselves cost around $115.

MakieLab Chief Technology Officer Matthew Wiggins said that the company's unique doll-making process, which is done through 3-D printing and without mass production, allows Makies to be create more inclusive toys.

"It’s fantastic that our supercharged design and manufacturing process means we can respond to a need that’s not met by traditional toy companies," he said in a statement.

Other toymakers have also been making an effort to create products that reflect real people. Last year, artist and researcher Nickolay Lamm released the "Lammily" dolls-- a line of dolls that are realistically proportioned. The toys have measurements that represent the average 19-year-old American girl and come with a set of stickers to add marks to the dolls, including acne and stretch marks.

"It can show that you don't have to be perfect," one girl said in reaction to the dolls, in a video about the product.

Topics: 3-D printed, children, medical, disabilities, dolls, toy company, toy like me

Tutu Tuesday Brings Smiles to Florida Children's Hospital

Posted by Erica Bettencourt

Mon, May 04, 2015 @ 12:39 PM

By FREIDA FRISARO

http://abcnews.go.com 

WireAP 81568d5fb53a4d3cb4394b05626b814e 16x9 992 resized 600One morning last summer, Tony Smith slipped a multicolor tutu over his scrubs in the pre-op ward of a South Florida hospital to grant the wish of a young patient heading to surgery.

A photo of the tutu-clad Smith quickly became a hit online and within weeks, Tutu Tuesday was born at Joe DiMaggio Children's Hospital.

"That day, it was all about making a patient feel comfortable. Having me put on the tutu made her feel better," said Smith, an operating room assistant who has worked at the Hollywood, Florida, hospital for almost five years. "I never knew I would have that much impact. I didn't expect it to go viral."

But it did. Once employees saw the shot, they started asking Lotsy Dotsy — resident clown and unofficial keeper of the tutu — for their own frilly skirts to wear. Department by department, hospital staff adopted Tutu Tuesday.

It begins outside the hospital named for a baseball legend, where visitors are greeted by a valet whose tutu clashes with his normal uniform — shorts and a baseball jersey.

"People laugh and ask why I'm wearing a skirt," said John Aristizabal, who takes good-natured kidding as he parks cars. "It's all for the kids, to catch a smile."

On Tutu Tuesday, smiles are contagious.

Inside the hospital, tutus are everywhere. Doctors, nurses, technicians and receptionists don the colorful layers of tulle, decorated with polka dots and fancy bows as they go about the business of tending to patients. Even Nutmeg, the in-house therapy dog, has a specially designed pink tutu. Hospital administrators also play along, wearing tutus over their business suits.

Smith said he could have never imagined that such a simple act would catch on.

"It's for the patients," Smith said. "Just seeing you in a tutu brightens their day, and it can keep them from thinking about what's really going on."

That's exactly what pediatric anesthesiologist Dr. Bob Kaye has been doing for years. He's worn a variety of funny hats and wigs to help ease the fears of his young patients. Now he's added a tutu to his routine and has found that his patients and their parents like the distraction.

"If you can dress in a way that it not threatening and silly, maybe, and make the medical professional look not like the last person who gave them a shot in the doctor's office, then it's a lot easier to feel comfortable with them," he said. "I think it's an ice breaker."

On a Tuesday morning in March, Laurel Barnett and her 13-year-old daughter Julia arrived about 5:45 a.m. for surgery.

"Of course, not having any coffee and then coming in and seeing everyone in tutus is quite amusing," Barnett said. "It's not what you expected to see. It does give children a sense of relief that these people are not only here to help them, but there to have fun as well. It kind of takes their mind off of things."

Smith says he's not bothered at all by the stares and giggles as he makes his way through the hospital's corridors every Tuesday. He even offered his tutu to 12-year-old Brayden Wilmsmeyer, who along with his 10-year twin sisters Leah and Lexi spent spring break getting respiratory treatment at Joe DiMaggio.

The twins had borrowed tutus from two nurses for an impromptu photo session.

"Remember, you are a real man," Smith told Brayden as he pulled the tutu over his pants. "Don't let anyone tell you otherwise just because you're wearing a tutu."

Topics: health, healthcare, nurses, doctors, children, medical, patients, hospital, treatment, children's hospital, medical staff

Lives Of Three Babies Rescued By 3D-Printed, Growth-Flexible Implants

Posted by Erica Bettencourt

Fri, May 01, 2015 @ 11:46 AM

Written by Markus MacGill

www.medicalnewstoday.com 

kaiba gionfriddo resized 6003D printing has come to the rescue of severe cases of a childhood disease in which the windpipe is softened, leading to collapse of the airway and breathing failure. Previously lacking any adequate intervention, tracheobronchomalacia has found an innovative fix in three babies whose condition presented them with little chance of reaching young childhood.

Researchers at the University of Michigan's C.S. Mott Children's Hospital in Ann Arbor say the three boys have become the "first in the world to benefit from groundbreaking 3D-printed devices" to stent their airways in such a way as to allow the supports to keep up with their growth.

A follow-up of all three patients published in the journal Science Translational Medicine shows the personalized bioresorbable splint implants have worked with "promising results."

Pediatric tracheobronchomalacia (TBM) sees excessive collapse of the airways during breathing that can lead to life-threatening cardiopulmonary arrests (halted heart and breathing).

The cartilage supporting the airway can strengthen as children with the condition grow, the study paper goes on to explain, but severe cases of the disease require aggressive treatment - and those children are at "imminent risk of death."

Before this new approach to provide an early treatment option for TBM, the only conventional therapies available also carried life-threatening complications of their own.

Babies needed tracheostomy tube placement with mechanical ventilation, requiring prolonged hospitalization, and complications often led to cardiac and respiratory arrest. For example, the rate of respiratory arrest owing to tube occlusion runs as high as 43% of pediatric tracheostomy procedures a year.

Survivors: Kaiba, Ian and Garrett

But none of the newly developed 3D-printed devices have caused any complications for the three children treated, including Kaiba, who at 3 months old was the first to receive the new technology, 3 years ago. The stents were also inserted into 5-month-old Ian and 16-month-old Garrett.

Designed to accommodate airway growth while preventing external compression over a period of time before bioresorption, the technology allows for the particular problem of radial expansion of the airway over the critical period of growth. "If a child can be supported through the first 24 to 36 months of tracheobronchomalacia, airway growth generally results in a natural resolution of this disease," write the authors.

Senior author Dr. Glenn Green, associate professor of pediatric otolaryngology at C.S. Mott, says: "Before this procedure, babies with severe tracheobronchomalacia had little chance of surviving. Today, our first patient Kaiba is an active, healthy 3-year-old in preschool with a bright future." Dr. Green adds:

 

"The device worked better than we could have ever imagined. We have been able to successfully replicate this procedure and have been watching patients closely to see whether the device is doing what it was intended to do.

We found that this treatment continues to prove to be a promising option for children facing this life-threatening condition that has no cure."

 

Dr. Green describes in the video below how he and his colleagues at the University of Michigan worked on finding the solution.


Dr. Green strives enthusiastically for the lives of babies born with the condition, which he says in a post on the hospital's Hail to the little victors blog is often misdiagnosed as treatment-resistant asthma. He adds that it is a rare congenital condition affecting about 1 in 2,200 births, and the severe cases are even rarer, with most children growing out of the milder cases by 2 or 3 years of age.

"Kaiba's parents, April and Bryan, were left watching helplessly each time he stopped breathing, praying that something would change and doctors' predictions that he would never leave the hospital again weren't true," writes Dr. Green in 2013.

The 3D-printed splints were computational image-based designed to be customizable so that the following parameters could be made bespoke to the individual patient's anatomy on "the submillimeter scale:"

  • Inner diameter, length and wall thickness of the device
  • Number and spacing of suture holes.

Not being a closed cylinder, the design of the tubes gave an opening to allow placement but also expansion of the radius as the airways grew. All the inserts placed around the airways were made of polycaprolactone, a polymer that harmlessly dissolves in the body at a rate to allow the technology time to support the growing cartilage.

For Garrett's bespoke device on his left bronchus, the opening had a spiral shape to it, to allow a device to be fitted concurrently around, and grow with, his right bronchus, too.

Freedom from intensive care treatments

The Michigan team also share findings showing that the success of the devices meant the young children were able to come off of ventilators and no longer needed paralytic, narcotic and sedating drugs.

There were improvements in multiple organ systems and problems that had prevented the babies from absorbing food, so now they could be free of intravenous therapy.

The research doctors had received urgent approval from the US Food and Drug Administration to do the procedures, but it is early days for the strategy to become routine for babies with TBM. The case report published today was not designed to test the safety of the devices - so it may yet be possible that rare complications are found to result from treatment in some cases. Dr. Green says:

"The potential of 3D-printed medical devices to improve outcomes for patients is clear, but we need more data to implement this procedure in medical practice."

The specialist surgeon performing the operations, Dr. Richard Ohye, head of pediatric cardiovascular surgery at C.S. Mott, believes the cases provide the groundwork for a potential clinical trial in children with less-severe forms of TBM.


Topics: 3-D printing, medical technology, health, healthcare, children, medical, patients, hospital, patient, treatment, babies, TBM

How Do Race And Ethnicity Influence Childhood Obesity?

Posted by Erica Bettencourt

Wed, Apr 29, 2015 @ 10:54 AM

Written by James McIntosh

www.medicalnewstoday.com 

children lying down in a circle smiling resized 600Obesity is a serious public health problem in the US and can affect anyone regardless of age. In particular, childhood obesity prevalence remains high. As well as compromising a child's immediate health, obesity can also negatively influence long-term health dramatically. Unfortunately, some racial and ethnic groups are affected by obesity much more than others.

For example, the US Department of Health and Human Services Office of Minority Health (OMH) report that African-American women have the highest rates of being overweight or obese, compared with other racial or ethnic groups in the US.

Approximately 4 out of 5 African-African women were found to be overweight or obese and, in 2011, African-American women were 80% more likely to be obese than non-Hispanic white women.

Researchers have identified that disparities in obesity prevalence can be found just as readily among children as among adults. It is alarming that these disparities exist to begin with, but more so that they exist so early in life for so many.

In this Spotlight feature, we take a brief look at the prevalence of childhood obesity in the US and the disparities in childhood obesity prevalence that exist among different racial and ethnic groups. We will examine what factors may contribute to this disparity and what action can be taken to remedy the situation.

A growing problem

"Obesity is the terror within," states Dr. Richard Carmona, the former Surgeon General. "Unless we do something about it, the magnitude of the dilemma will dwarf 9-11 or any other terrorist attempt."

These are strong words, but they illustrate the scope of the obesity problem. According to the Centers for Disease Control and Prevention (CDC), in 2009-2010, over a third (35.7%) of adults in the US were obese.

On average, childhood obesity in the US has not changed significantly since 2003-2004, and overall, approximately 17% of all children and adolescents aged 2-19 years are obese - a total of 12.7 million.

There are a number of immediate health problems that childhood obesity can lead to, including:

  • Respiratory problems, such as asthma and sleep apnea
  • High blood pressure and cholesterol
  • Fatty liver disease
  • Increased risk of psychological and social problems, such as discrimination and low self-esteem
  • Joint problems
  • Type 2 diabetes.

In the long term, obese children are much more likely to grow up to be obese as adults than children with healthy weights. Not only that, but the obesity experienced by these children is likely to be more severe, leading to further and more extreme health problems.

Significant disparities exist in obesity prevalence between different racial and ethnic groups. The CDC report the following obesity prevalence percentages among different youth demographics:

  • Hispanic youth - 22.4%
  • Non-Hispanic black youth - 20.2%
  • Non-Hispanic white youth - 14.1%
  • Non-Hispanic Asian youth - 8.6%.

From these figures taken from 2011-2012, we can see that levels of obesity among Hispanic and non-Hispanic black children and adolescents are significantly above average.

When the parameters are extended to include overweight children as well, the disparity persists. Around 38.9% of Hispanic youth and 32.5% of non-Hispanic black youth are either overweight or obese, compared with 28.5% of non-Hispanic white youth.

In 2008, Dr. Sonia Caprio, from the Yale University School of Medicine, CN, and colleagues wrote an article published in Diabetes Care in which they examined the influence of race, ethnicity and culture on childhood obesity, and what their implications were for prevention and treatment.

"Obesity in children is associated with severe impairments in quality of life," state the authors. "Although differences by race may exist in some domains, the strong negative effect is seen across all racial/ethnic groups and dwarfs any potential racial/ethnic differences."

However, if there are specific factors contributing to these disparities that can be addressed, the numbers involved suggest that attention should be paid to them. The long-term health of thousands of children in the US is at stake.

Socioeconomic factors

"Rarely is obesity in children caused by a medical condition," write the National Association for the Advancement of Colored People (NAACP) in their childhood obesity advocacy manual. "It occurs when more calories are eaten than calories burned."

The NAACP outline a number of factors that contribute to increases in childhood obesity, including:

  • The development of neighborhoods that hinder or prevent outdoor physical activity
  • Failure to adequately educate and influence families about good nutrition
  • Ignored need for access to healthy foods within communities
  • Limited physical activity in schools
  • Promotion of a processed food culture.

The CDC report that childhood obesity among preschoolers is more prevalent in those who come from lower-income families. It is likely that this ties in with the disparity with obesity prevalence among different racial and ethnic groups.

"There are major racial differences in wealth at a given level of income," write Caprio, et al. "Whereas whites in the bottom quintile of income had some accumulated resources, African-Americans in the same income quintile had 400 times less or essentially none."

Fast food and processed food is widely available, low cost and nutritionally poor. For these reasons, they are often associated with rising obesity prevalence among children. According to Caprio, et al., lower-cost foods comprise a greater proportion of the diet of lower-income individuals.

If adults need to work long hours in order to make enough money to support their families, they may have a limited amount of time in which to prepare meals, leading them to choose fast food and convenient processed food over more healthy home-cooked meals.

Living in high-poverty areas can also mean that children have limited access to suitable outdoor spaces for exercise. If the street is the only option available to children in which to play, they or their parents may prefer them to stay inside in a safer environment.

Hispanic youth and non-Hispanic black youth are more likely to come from lower-income families than non-Hispanic white youth. According to The State of Obesity, white families earn $2 for every $1 earned by Hispanic or non-Hispanic black families.

Over 38% of African-American children aged below 18 and 23% of Latino families live below the poverty line. This statistic suggests that the effects of living with a low income that increase the risk of obesity may be felt much more by African-American and Latino families and their children.

Not only do these socioeconomic factors increase the risk of obesity among these demographic groups but equally obesity can compromise a family's economic standing.

The NAACP point out that families with obese children spend more money on clothing and medical care. Additionally, as obese and overweight girls frequently start puberty at a younger-than-average age, there is a possibility that their risk of adolescent pregnancy is also higher.

Cultural factors

Alongside these socioeconomic factors, a number of additional factors exist that may be linked to an increased prevalence of childhood obesity among Hispanic and non-Hispanic black youth.

The NAACP give one such example, stating that one component of body image is how a person believes others view them or accept their weight:

"This also poses unique challenges in African-American communities because of cultural norms that accept, uplift and at times reward individuals who are considered 'big-boned,' 'P-H-A-T, fat,' or thick.'"

Cultural norms such as these may lead to parents remaining satisfied with the weight of their children or even wanting them to be heavier, even if they are at an unhealthy weight. Other sociological studies have also suggested that among Hispanic families, women may prefer a thin figure for themselves but a larger one for their children, according to Caprio, et al.

As well as being influenced by socioeconomic status, the type of foods eaten by children can be influenced by the cultural traditions of their families.

"Food is both an expression of cultural identity and a means of preserving family and community unity," write Caprio, et al. "While consumption of traditional food with family may lower the risk of obesity in some children (e.g., Asians), it may increase the risk of obesity in other children (e.g., African-Americans)."

As mentioned earlier, the promotion of a processed food culture may be a contributing factor to childhood obesity. As fast food companies target specific audiences, favoring cultural forms associated with a particular race or ethnicity could increase children's risk of being exposed to aggressive marketing.

Caprio, et al., report that exposure to food-related television advertising - most frequently fast food advertising - was found to be 60% among African-American children.

The amount of television that is watched may contribute as well; one study conducted by the Kaiser Family Foundation observed that African-American children watched television for longer periods than non-Hispanic white children.

A number of these cultural factors are associated with socioeconomic factors. African-American children may be more likely to watch television for longer, for example, if they live in areas where opportunities for playing safely outside are limited.

What can be done?

This subject area is far too detailed to do justice to in an article of this size, but these brief observations suggest that there should be ways in which the disparity in childhood obesity between racial and ethnic groups can be addressed.

Having more safe spaces to walk, exercise and play in low-income areas would give children a better opportunity to get the exercise need to burn the required number of calories each day. Improving the availability of and access to healthy food would give families more options when it came to maintaining a healthy, balanced diet.

The NAACP state that low-income neighborhoods have half as many supermarkets as the wealthiest neighborhoods, suggesting that for many low-income families, accessing healthy food can be a challenge.

These problems are ones that would need to be solved by local government and businesses that have influence over the planning and development of public living spaces. 

Caprio, et al. propose that a "socioecological" framework should be adopted to guide the prevention of childhood obesity. Such a framework would involve viewing children "in the context of their families, communities, and cultures, emphasizing the relationships among environmental, biological and behavioral determinants of health."

This approach would require large-scale collaboration, involving peer support, the establishment of supportive social norms and both the private and public sector working together.

"For health care providers to have a meaningful interaction about energy intake and energy expenditure with children/families, providers should have training in cultural competency in order to understand the specific barriers patients face and the influence of culture and society on health behaviors," the authors suggest.

In order for this disparity to be adequately addressed, a lot of work will need to be done. Not only might certain cultural norms need to be altered, but most importantly, environments will need to be provided in which children will have the opportunity to live as healthy lives as possible.

Topics: US, obesity, diversity, health, healthcare, CDC, public health, children, minority, ethnicity, race, childhood obesity

Elmo Says 'Get Vaccinated' in New Video

Posted by Erica Bettencourt

Mon, Apr 20, 2015 @ 11:23 AM

By GILLIAN MOHNEY

http://abcnews.go.com 

HT elmo psa jef 150417 16x9 992 resized 600Turns out even Muppets aren't immune to the need for vaccinations.

In a new video released by the U.S. Health and Human Services, Elmo of “Sesame Street” joined forces with the U.S. Surgeon General to encourage all children to be up to date on their vaccinations.

"I explained to him that, as Surgeon General, it is my job to help everyone stay healthy," U.S. Surgeon General Vivek H. Murthy said in a statement. "Specifically, Elmo and I talked about the importance of vaccines and making sure that all children are protected from easily preventable diseases."

While a shot may not be fun for a Muppet, even Elmo says he's ready. "Come on everybody get vaccinated with Elmo!" he said in the video.

The video was released the same day that the California State Department of Health declared the end of a recent measles outbreak that infected 147 people in the United States, with 131 people sickened in California alone.

A bill is pending in the California state legislature that would stop parents from seeking personal or religious belief exemptions that would allow their children to attend school without being vaccinated.

While nationwide the rate of vaccination remains high, pockets of unvaccinated people have led to recent outbreaks of diseases formerly thought of as eliminated or extremely rare.

Vaccines helped stop 21 million hospitalizations and 732,000 deaths of children in the United States from 1994 to 2013, according to the U.S. Department of Health and Human Services.

Topics: surgeon general, health, healthcare, children, diseases, vaccinations, muppets, sesame street

Researchers Identify Brain Signaling Linked To 'Cooties' And 'Crush' Phenomenons In Children

Posted by Erica Bettencourt

Mon, Apr 13, 2015 @ 11:06 AM

Written by Honor Whiteman

www.medicalnewstoday.com

amygdala activity resized 600Researchers have identified a signal in the amygdala brain region of young children that stimulates aversion to the opposite sex and induces interest in the opposite sex as children enter puberty.

Published in the Journal of Cognitive Neuroscience, the study challenges previous beliefs about the role of the amygdala, according to the researchers.

Lead investigator Eva Telzer, of the University of Illinois at Urbana-Champaign, says the amygdala was once believed to be a threat detector. "But increasing evidence indicates that it is activated whenever someone detects something meaningful in the environment," she notes. "It is a significance detector."

To reach their findings, Telzer and her team enrolled 93 youths aged 7-17 years to the study and assessed their attitudes toward children of the same sex and of the opposite sex. 

In addition, the researchers used functional magnetic resonance imaging (fMRI) to assess the brain activity of 52 youths aged 4-18 as they viewed same- and opposite-sex faces.

Amygdala activity wanes between the ages of 10 and 12

The team found that young children aged 4-7 years had more negative attitudes toward the opposite sex - a finding they say supports the "cooties" phenomenon, in which young children steer clear of the opposite sex with the belief that they may "contaminate" them if they get too close.

"Only the youngest children in our sample demonstrated a behavioral sex bias such that they rated same-sex peers as having more positive (and less negative) attributes than opposite-sex peers," say the researchers.

Interestingly, children of this age showed increased brain activity in the amygdala region of the brain as they viewed faces of the opposite sex. "And so we think the amygdala is signaling the significance of cooties at this developmental period," says Telzer.

The researchers found that among children between ages of 10 and 12, there was no difference in the amygdala's response to same- and opposite-sex faces.

However, they saw a significant increase in amygdala response to the opposite sex from 12 years onwards - just as children begin to enter puberty. The researchers say this may correspond with the "crush" phenomenon, in which pubescent youths become captivated with the opposite sex.

"When puberty hits, gender becomes more significant again, whether it's because your body is changing, or because of sexual attraction or you are becoming aware of more rigid sexual boundaries as you become more sexually mature," says Telzer. "The brain is responding very appropriately, in terms of what's changing developmentally."

In May 2014, Medical News Today reported on a study published in the Proceedings of the National Academy of Sciences, in which researchers found changes in cerebral blood flow levels differ between girls and boys during puberty, with such levels rising in girls and reducing in boys.

The researchers of that study - led by Dr. Theodore Satterthwaite of Perelman School of Medicine at the University of Pennsylvania - say the findings were linked to higher risk of anxiety in females and increased risk of schizophrenia in males.

"These findings help us understand normal neurodevelopment and could be a step toward creating normal 'growth charts' for brain development in kids," says Dr. Satterthwaite. "These results also show what every parent knows: boys and girls grow differently. This applies to the brain as well."

Topics: studies, health, brain, children, medical, amygdala, opposite sex, puberty, brain activity

Hayley Okines Dies From Rare Premature Aging Disease Aged 17

Posted by Erica Bettencourt

Mon, Apr 06, 2015 @ 01:53 PM

Written by Honor Whiteman

www.medicalnewstoday.com 

hayley okines resized 600

Progeria or Hutchinson-Gilford Progeria Syndrome (HGPS), affects around 1 in 4-8 million newborns worldwide. There are approximately 200-250 children living with the condition across the globe at any one time.

Progeria is caused by an abnormal protein in the LMNA gene, called progerin, which interferes with the production of lamin A - a protein that stabilizes a cell's nucleus. This disruption causes children with progeria to age up to 10 times faster than normal.

On Thursday evening, it was announced that 17-year-old progeria sufferer Hayley Okines - from Medical News Today's hometown Bexhill in East Sussex, England - had passed away.

Hayley's mother, Kerry Okines, posted the sad news on Facebook: "My baby girl has gone somewhere better. She took her last breath in my arms at 9.39 pm."

Hayley - who BBC News say had the "body of a 104-year-old" - was being treated in the hospital for pneumonia, but she returned home shortly before she died. "She came home for an hour and she saw her puppies, little brother Louie and her sister Ruby," Hayley's father, Mark Okines, told BBC News on Friday.

"I think she wanted to come home to say goodbye to everybody," he continued. "I think she knew that yesterday was going to be the time."

'We remember her tremendous courage and determination'

Children with progeria rarely live past the age of 14, often passing away from ailments that affect the elderly, such as heart disease and stroke. 

Hayley was told she would not live past the age of 13, but in 2007, the teenager began undergoing pioneering treatment at Boston Children's Hospital, MA, as part of the first clinical trial for the condition.

In September 2012, MNT reported on the success of this trial, revealing how a farnesyltransferase inhibitor (FTI) improved the weight, bone structure and cardiovascular health of children with progeria.

In a statement following Hayley's death, the Progeria Research Foundation praised the teenager for her contribution to progeria research:

"The entire PRF community mourns the loss of one of our shining stars, Hayley Okines. Hayley was one of the first participants in the ongoing progeria clinical trials. Hayley was a pioneer - and one of the reasons that we now have the first treatment for progeria. Today we remember her tremendous courage and determination."

Hayley was an avid campaigner for progeria awareness, hailed locally and nationally as an inspiration for people with and without the condition. The teenager penned two books detailing her experiences of living with progeria - "Old Before My Time" and "Young at Heart" - and took part in numerous interviews.

As well as for her contribution to progeria awareness and research, Hayley was highly admired for her positive outlook on life, writing in "Young at Heart:"

"My life with progeria is full of happiness and good memories. Deep inside I am no different from anyone. We are all human."

Our thoughts and prayers are with Hayley's family and friends at this difficult time.

The news of Hayley's death comes just 15 months after it was announced Sam Burns, a boy from Foxborough, MA, had died from progeria aged 17.

Topics: children, Hayley Okines, HGPS, premature aging disease

Grandfather's Grief Inspires Project to Help Sick Kids

Posted by Erica Bettencourt

Tue, Mar 10, 2015 @ 02:59 PM

Elisha Fieldstadt

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Red toy wagons, used to help caretakers to transport ill children to and from treatments and appointments, are a staple in the hallways of Children's Healthcare of Atlanta. The pediatric patients' IV poles have always had to be pulled awkwardly behind the wagons — until a grandfather and his son decided that needed to change.

Roger Leggett's granddaughter, Felicity, was diagnosed with a brain tumor at the age of 4 in 2011. While visiting the young girl during her treatment at Children's Healthcare of Atlanta (CHOA), Leggett and his son, Chad, saw a mother pulling her child in a wagon, struggling to also drag his IV behind. "Chad looked at me and said: 'There's gotta be a better way to do that,'" Leggett told NBC affiliate WXIA.

Chad tragically died of heat stroke just a few weeks later, but Leggett remembered that moment, which inspired him to create the not-for-profit, Chad's Bracket, which is dedicated to connecting IV poles to patients' red wagons, according to the organization's Facebook page. With help from students at Chattahoochee Technical College, Leggett has affixed IV poles to more than 100 wagons at CHOA, and is hoping to fill requests from hospitals around the country, according to WXIA. His workshop is currently based in the bed of his late son's pickup truck.

Felicity received news recently that she is in remission, and Leggett is humbled by the support his efforts have garnered. "I don't feel I deserve the praise. I'm just trying to make the time a child and parents spend at CHOA easier and safer," Leggett said.

Source: www.nbcnews.com

Topics: Children's Hospital, IV poles, health, children, medical, patients, hospital, care

Visiting Nurses, Helping Mothers on the Margins

Posted by Erica Bettencourt

Tue, Mar 10, 2015 @ 02:02 PM

SABRINA TAVERNISE

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When it came time to have the baby, Shirita Corley was alone. Her mother was at the casino, her sister was not answering her cellphone, her boyfriend had disappeared months earlier, and her father she had not seen in years.

So she got in her green Chevy TrailBlazer and drove herself to the hospital.

“I feel so down,” she texted from her hospital bed. “I’m sick of these deadbeats. I’m sick of having to be so strong.”

The message went not to a friend or family member, but to a nurse, Beth Pletz. Ms. Pletz has counseled Ms. Corley at her home through the Nurse-Family Partnership, which helps poor, first-time mothers learn to be parents.

Such home visiting programs, paid for through the Affordable Care Act, are at the heart of a sweeping federal effort aimed at one of the nation’s most entrenched social problems: the persistently high rates of infant mortality. The programs have spread to some 800 cities and towns in recent years, and are testing whether successful small-scale efforts to improve children’s health by educating mothers can work on a broad national canvas.

Home visiting is an attempt to counter the damaging effects of poverty by changing habits and behaviors that have developed over generations. It gained popularity in the United States in the late 1800s when health workers like Dr. S. Josephine Baker and Lillian Wald helped poor mothers and their babies on the teeming, impoverished Lower East Side of Manhattan. At its best, the program gives poor women the confidence to take charge of their lives, a tall order that Ms. Pletz says can be achieved only if the visits are sustained. In her program, operated here by Le Bonheur Children’s Hospital, the visits continue for two years.

It is Ms. Pletz’s knack for listening and talking to women — about misbehaving men, broken cars, unreliable families — that forms the bones of her bond with them.

She zips around Memphis in her aging Toyota S.U.V. with a stethoscope dangling from the rearview mirror. Her cracked iPhone perpetually pings with texts from her 25 clients. Most of them are young, black, poor and single. Few had fathers in their lives as children, and their children are often repeating the same broken pattern.

“I was lost, going from house to house,” recalled Onie Hayslett, 22, who was homeless and pregnant when she first met Ms. Pletz two years ago. Her only shoes were slippers. “She brought me food. That’s not her job description, but she did it anyway. She really cares about what’s going on. I don’t have many people in my life like that.”

Infant mortality rates in the United States are about the same as those in Europe in the first month of life, a recent study found, but then become higher in the months after babies come home from the hospital — a period when abuse and neglect can set in. (The study adjusted for premature births, which are also higher in the United States partly because of poverty. They were kept out of the study, researchers said, because the policies to reduce them are different.)

In Memphis, where close to half of children live in poverty, according to census data, the infant mortality rate has long been among the country’s highest. Sleep deaths — in which babies suffocate because of too much soft bedding or because an adult rolls over onto them — accounted for a fifth of infant deaths in the state, according to a 2013 analysis of death certificates by the Tennessee Department of Health.

When Ms. Pletz recently visited Darrisha Onry, 21, she saw Ms. Onry’s week-old child, Cedveon, lying beside her on a dark blue couch. The room was warm, small and crowded with a large living room set, a glass table, porcelain statues of dogs and an oversize cage holding two tiny, napping puppies.

“Where is he sleeping?” Ms. Pletz asked.

Cedveon started to cry, and Ms. Onry walked out of the room to make his bottle.

“The safest place for him is alone by himself on his back in his crib,” Ms. Pletz said, scooping up Cedveon, who had launched into a full-throated squall.

A little later, Ms. Pletz said, "You know never to shake the baby, right?”

Ms. Onry nodded.

Ms. Pletz continued: “Nerves get shot and sometimes people lose their cool. If that happens, just put him on his back on a bed and close the door, and take a little rest away from him.”

The program is unusual because it is based on a series of clinical trials much like those used to test drugs. In the 1970s, a child development expert, Dr. David Olds, began sending nurses into the homes of poor mothers in Elmira, N.Y., and later into Memphis and Denver. The nurses taught mothers not to fall asleep on the couch with their infants, not to give them Coca-Cola, to pick them up when they cried and to praise them when they behaved. The outcomes were compared with those from a similar group of women who did not get the help.

The results were startling. Death rates in the visited families dropped not just for children, but for mothers, too, when compared with families who did not get the services. Child abuse and neglect declined by half. Mothers stayed in the work force longer, and their use of welfare, food stamps and Medicaid declined. Children of the most vulnerable mothers had higher grade-point averages and were less likely to be arrested than their counterparts.

The program caught the attention of President Obama, who cited it in his first presidential campaign. His administration funded the program on a national scale in 2010. So far, the home visits have reached more than 115,000 mothers and children. States apply for grants and are required to collect data on how the families fare on measures of health, education and economic self-sufficiency. Early results are expected this year.

“The big question is, can the principle of evidence be implemented in a large federal program?” said Jon Baron, president of the Coalition for Evidence-Based Policy, a nonprofit group in Washington whose aim is to increase government effectiveness in areas including education, poverty reduction and crime prevention. “And if so, will it actually improve health?”

Experts say federal standards are too loose and have allowed some groups with weak home visiting programs to participate, even if they show effects on only trivial outcomes that have no practical importance for a child’s life. Congress should fix the problem, Mr. Baron said, warning that the program in its current state is “a leaky bucket.”

“If left unchanged, essentially anyone will figure out how to qualify,” he said.

Its future is not assured. Funding for the home visiting initiative runs out as early as September for some states, and if Congress does not reauthorize it this month, programs may stop enrolling families and the $500 million the Obama administration has requested for 2016 will not be granted. Last week, its supporters urged Congress to extend it.

In Tennessee, where home visiting programs have bipartisan support, infant mortality is down by 14 percent since 2010, and sleep deaths dipped by 10 percent from 2012 to 2013. State officials credit a multitude of policies, including the home visits.

Ms. Pletz worries that she has helped only a handful of her clients truly improve their lives. But Ms. Corley, 28, the mother who drove herself to the hospital, said Ms. Pletz, who has been visiting her for two years, had made a difference. She “has been my counselor, my girlfriend, my nurse,” Ms. Corley said. Ms. Pletz helped her cope with the disappearances of her children’s fathers, taught her to recognize whooping cough and pushed her to set career goals, she said.

“She knows more about me than my own family does,” Ms. Corley said. “I feel like I’ve grown more wise. I feel stronger for sure.”

The morning after Ms. Corley gave birth, Ms. Pletz brought her breakfast: eggs, flapjacks and bacon. The new baby, Daniel, lay in a clear plastic crib next to Ms. Corley’s hospital bed, and the two women talked over his head like old friends.

“Can I pick him up?” Ms. Pletz asked.

Ms. Corley replied: “I think he’s waiting on it.”

Source: www.nytimes.com

Topics: parents, affordable care act, mothers, infant mortality, nursing, family, nurse, nurses, children

College Kids Make Robotic Arms For Children Without Real Ones

Posted by Erica Bettencourt

Tue, Mar 10, 2015 @ 12:39 PM

 Daphne Sashin

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By the time Cynthia Falardeau read about Alex Pring, a little boy who got a battery-powered robotic arm last summer, she had made peace with her son Wyatt's limb difference. 

Her premature baby had been born with his right arm tangled in amniotic bands. At a week old, doctors amputated his dead forearm and hand. They were afraid his body would be become infected and he would die. Falardeau mourned her boy's missing arm for years but, in time, embraced her son as he was. 

Wyatt also learned to adapt. They tried a couple of prosthetics when he was younger and each time the toddler abandoned the false limb within months. 

"His main interest was to create a shocking response from onlookers by pulling it off in the grocery store," Falardeau wrote on CNN iReport. In truth, she had been more concerned about getting him therapy for his autism-related delays -- the limb difference was secondary.

So when a friend shared a story from the "Today Show" with Wyatt in mind, about a team of University of Central Florida (UCF) students and graduates that made an electronic arm for 6-year-old Pring using a three-dimensional printer on campus, Falardeau was defensive. 

"He doesn't need this," she thought. 

Her fifth-grader had a different reaction: "I want one of these robot arms!" Falardeau remembers Wyatt telling her and her husband. "I could ride a bike! I might even be able to paddle a kayak!" 

There were other things the 12-year-old boy said he would do if he had two hands. A proper somersault. Clap with two hands. Dance with a pretty girl with one hand on her back and the other leading. Stuff she hadn't really thought about but he clearly had.

Falardeau got in touch with the Orlando students through E-Nable, an online volunteer organization started by Rochester Institute of Technology research scientist Jon Schull to match people who have 3-D printers with children in need of hands and arms. The organization creates and shares bionic arm designs for free download at EnablingTheFuture.org that can be assembled for as little as $20 to $50. Middle and high school student groups and Girl and Boy Scout troops are among those donating their time and materials to assemble limbs for kids and give them to recipients for free.

The UCF team, which operates a nonprofit called Limbitless Solutions, is special because it's the only group in the 3-D volunteer network making electronic arms. Most 3-D arms are mechanical, which presents a challenge for children without elbows. With mechanical arms, the child opens and closes their hand by bending their elbow. The students came up with the idea for an electronic arm with a muscle sensor that allows the child to open and close their hand by flexing their bicep.

"It's really just a step-by-step process of solving problems. The first problem we solved was: how do we make the hand move electronically? And then: how do we attach this arm to a child?" said sophomore Tyler Petresky. "It's just one problem after another we keep solving. That's what engineering is all about." 

The Centers for Disease Control and Prevention estimates about 1,500 babies in the United States are born with upper limb deformities each year. Comprehensive statistics aren't available for the number of children with amputations, such as Wyatt. 

The UCF project started when Albert Manero, an engineering doctoral student, heard a story on the radio about one of the inventors of the 3-D printed hand. He got involved with E-Nable and met Alex, a local boy teased because of his missing arm, and set about designing a robotic replacement. They gave it to Alex for free. 

"My mother taught us that we're supposed to help change the world," Manero said at the time."We're supposed to help make it better." 

The students were blown away by what happened after that. The "Today Show" and other national news outlets featured stories about Alex and Manero, and then they got international attention. Families in more than 25 countries have asked the UCF students to help their children. In February, Microsoft highlighted the team in a social media campaign celebrating students using technology to change the world.

Each electronic limb takes about 30 to 50 hours to make and assemble. The students use the printer in the school's manufacturing lab and cover the cost of materials -- about $350 -- through donations.

Petresky got involved with the design of Pring's hand because Manero knew he was good with electronics. 

"He bribed me with some pulled pork sandwiches. I went over to his house and helped him out with electronics," he said. "I found out he was working on an arm, and I thought that was the coolest thing in the world."

Eventually Manero moved to Germany for a Fulbright scholarship and left Petresky in charge of running the operations in Orlando.

Petresky says they ask every family about the child's favorite color, superhero and interests, so the new limb can "not just be a piece of plastic ... but be a part of them." 

As they've designed the bionics, they've learned that kids don't necessarily want to blend in. Children have requested colorful designs inspired by superheroes, Disney's "Frozen," and in Wyatt's case, the blue-skinned men from "Blue Man Group." For Christmas, the group upgraded Alex's plain vanilla white arm to a new one resembling Optimus Prime from "Transformers."

"We quickly found out this is much less about fitting in and feeling normal, and much more about expressing yourself," Petresky said. "There's a large aspect of being artistic and being creative."

The team has made electronic arms for five children and are working with three more kids including Wyatt. He traveled with his mom to UCF last week and practiced flexing his muscle to make the hand open and close.

He expects to get fitted with his new arm later this month.

His mom, Cynthia, was most excited about seeing Wyatt being celebrated for who he is.

"The adoration of college students was an affirmation that money can't buy. He was wrapped in the joy of leading and advising students on how to help children like himself," she wrote in her iReport. "Wyatt felt like he was making a difference for himself and other children."

As they got ready to leave the campus, her son told her he can't wait to see what he will accomplish with his new arm. And someday, he said, he wants to go to UCF and help other kids like him.

Source: www.cnn.com

Topics: robotic, limbs, robot, technology, health, children, medical, patients, college, students, robotic arm, 3-D printer

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