DiversityNursing Blog

www.foxnews.com 

A California cat named Vanilla Bean with a congenital heart defect got a rare chance at another life.

A team of doctors who usually treat humans came together with a veterinarian to operate on the 1-year-old Burmese cat. Blood was pooling in Vanilla Bean's heart, causing a chamber to grow larger. The defect is also found in children.

Untreated, it would lead to congestive heart failure.

A technique to correct the problem in a cat had reportedly been done only once before, by University of California, Davis veterinarian Josh Stern -- the same vet who operated on Vanilla Bean, the Sacramento Bee reports ( http://bit.ly/1PKsLYp ).

"I needed a human cardiology team to help guide me on this case," said Stern in a news release from the UC Davis Veterinary Medical Teaching Hospital. "It's so uncommon in cats. It's uncommon in children also, but they've certainly seen more cases of this than I have."

Stern teamed up with cardiologists from the UC Davis Medical Center and other vets to open the cat's chest and place catheters and balloons within Vanilla Bean's heart.

The operation was successful. Vanilla Bean lost a lot of blood, but transfusions were ready from the school's large veterinary blood bank.

The blood loss caused kidney injury, but the cat was able to go home eight days after surgery. After a four-month recuperation, an exam showed that the cat is no longer in congestive heart failure.

Stern said he expects Vanilla Bean to make a complete recovery.

By KAREN BARROW

www.nytimes.com 

Elisabeth Bing, who helped lead a natural childbirth movement that revolutionized how babies were born in the United States, died on Friday at her home in Manhattan. She was 100.

Her death was confirmed by her son, Peter.

Ms. Bing taught women and their spouses to make informed childbirth choices for more than 50 years. (“We don’t call it natural childbirth, but educated childbirth,” she once said.)

She began her crusade at a time when hospital rooms were often cold and impersonal, women in labor were heavily sedated and men were expected to remain in the waiting room, pacing.

Ms. Bing pushed for change. She worked directly with obstetricians, introducing them to the so-called natural childbirth methods developed by Dr. Fernand Lamaze, which incorporated relaxation techniques in lieu of anesthesia and enabled a mother to see her child coming into the world.

Along with Marjorie Karmel, Ms. Bing helped found Lamaze International, a nonprofit educational organization.

She became known as “the mother of Lamaze,” championing the technique in her book “Six Practical Lessons for an Easier Childbirth” (1967) and on the lecture and television talk-show circuits.

Today, Lamaze and other natural childbirth methods are commonplace in delivery rooms, and Lamaze classes, with their emphasis on breathing techniques, are attended by an estimated quarter of all mothers-to-be in the United States and their spouses each year.

For years Ms. Bing led classes in hospitals and in a studio in her apartment building on the Upper West Side of Manhattan, where she kept a collection of pre-Columbian and later Native American fertility figurines.

Ms. Bing preferred the term “prepared childbirth” to “natural childbirth” because, she said, her goal was not to eschew drugs altogether but to empower women to make informed decisions. Her mantra was “Awake and alert,” and she saw such a birth as a transformative event in a woman’s life.

“It’s an experience that never leaves you,” she told The New York Times in 2000. “It needs absolute concentration; it takes up your whole being. And you learn to use your body correctly in a situation of stress.”

There was one secret she seldom shared, however: Her own experience giving birth to her son, Peter, was decidedly unnatural. As Randi Hutter Epstein reported in her book “Get Me Out: A History of Childbirth From the Garden of Eden to the Sperm Bank” (2010), she continually asked her doctor, “Is my baby all right? Is my baby all right,” until the doctor said he could not concentrate with her chatter and gave her laughing gas and an epidural.

“I got everything I raged against,” Ms. Bing told Ms. Epstein. “I had the works.”

Elisabeth Dorothea Koenigsberger was born in a suburb of Berlin on July 8, 1914. Her parents, of Jewish descent, had converted to Protestantism years before her birth, but the family nevertheless felt the virulent anti-Semitism sweeping Germany before World War II. She was kicked out of a university two days into her freshman year, and two of her brothers — a historian and an architect — could not find work because of their Jewish background, she told The Journal of Perinatal Education in 2000.

After Ms. Bing’s father died in 1932, the family left the country; most members settled in England, while one sister moved to Illinois. In London, Ms. Bing studied to become a physical therapist and began work at a hospital. Mostly she helped patients with paralysis, multiple sclerosis and broken bones, but every morning she also visited the maternity ward, to give massages to new mothers and help them exercise. At the time, women were not allowed out of bed for as many as 10 days after giving birth.

She became interested in natural childbirth in 1942 when a patient handed her Dr. Grantly Dick-Read’s influential book “Revelation of Childbirth,” published that year (and later titled “Childbirth Without Fear”). Dick-Read proposed that pain during childbirth was caused by fear, and that a woman could avoid anesthesia by following a series of relaxation techniques aimed at reducing that fear.

Ms. Bing became intrigued and hoped to train with Dick-Read in the north of England, but with the war on and travel all but impossible, she began her own independent study. She read as much as she could and observed obstetricians and their patients — heavily anesthetized women who, she saw, had little control over the birth of their children.

“What I saw I disliked intensely,” she said in her interview with the perinatal journal. “I thought there must be better ways.”

Ms. Bing, who drove an ambulance during the war, began pursuing her interest in natural childbirth after 1949, when she moved to Jacksonville, Ill., to be with her sister, who had recently married. There, while working with handicapped children, Ms. Bing met an obstetrician who, she discovered, knew very little about natural childbirth. Resolving to champion the techniques, she began approaching obstetricians and having them send patients to her for one-on-one classes.

Ms. Bing had planned to return to England in about a year and was on her way back when she stopped in New York to visit friends. There she met Fred Max Bing, an exporter’s agent, and decided to stay. The two were married in 1951.

Besides her son, Ms. Bing is survived by a granddaughter. Her husband died in 1984.

In New York, Ms. Bing again started giving private childbirth education classes. They caught the attention of Dr. Alan Guttmacher, the chief of obstetrics at Mount Sinai Hospital, which had opened its first maternity ward in 1951. He asked her to teach a formal class there.

In her search for other childbirth alternatives, Ms. Bing began to learn about the psychoprophylactic method developed in the mid-1950s by Lamaze, a French obstetrician. Lamaze refined Dick-Read’s approach by incorporating breathing exercises he had observed in the Soviet Union, where anesthesia was a luxury poor women in labor could scarcely afford.

In 1960, Ms. Bing, by then a clinical assistant professor at New York Medical College, and Ms. Karmel founded the American Society for Psychoprophylaxis in Obstetrics, known today as Lamaze International.

Ms. Karmel, an American, had become a natural-childbirth crusader after seeking out Lamaze in Paris to help her deliver her first child, and her best-selling book, “Thank You, Dr. Lamaze” (1959), largely introduced the method to Americans and drew Ms. Bing’s attention.

(In the late 1950s, Ms. Bing had persuaded Ms. Karmel to smuggle into the United States an explicit French educational film, “Naissance,” depicting a woman giving natural birth. When New York City hospitals and the 92nd Street Y refused to show it in prenatal classes — they considered it obscene — the two women held a private screening at Ms. Karmel’s home on the Upper East Side. Ms. Karmel died of breast cancer in 1964.

At the heart of the methods the women promoted was the idea of family teamwork, with the father helping the mother by coaching her in responding to her contractions with breathing exercises and massaging her back, and being present during the delivery.

But in her book, Ms. Bing cautioned, “You certainly must not feel any guilt or sense of failure if you require some medication, or if you experience discomfort or pain.”

Some obstetricians were skeptical of the methods and thought Ms. Bing, not being a physician, was ill qualified to be instructing patients. But the natural-childbirth movement found a receptive public. Women coming of age in the 1960s embraced the idea of taking a more active role in childbirth and wanted fathers to participate more as well.

“It was a tremendous cultural revolution that changed obstetrics entirely,” Ms. Bing said in an interview in 1988.

Ms. Bing was modest about her role in the movement. “It wasn’t really a movement by Lamaze or Read or me,” she told the Disney-owned website Family.com. “It was a consumer movement. The time was ripe. The public doubted everything their parents had done.”

But she rejoiced in the outcome. “We are not being tied down anymore,” she said in 2000. “We’re not lying flat on our backs with our legs in the air, shaved like a baby. You can give birth in any position you like. The father, or anybody else, can be there. We fought for years on end for that. And now it’s commonplace. We’ve got it all.”

Lamaze, himself, did not acknowledge Ms. Bing, never responding to her requests for an interview even though she had made his name part of the American vernacular. During their only meeting, at a lunch in New York, he directed all his comments to a male obstetrician at the table.

“I’ve never thought of myself as someone with a legacy of any kind,” Ms. Bing said in an interview at an Upper West Side cafe. “I hope I have made women aware that they have choices, they can get to know their body and trust their body.”

“If my ideas supported feminist ideas,” she continued, “well, that’s all right. But I’ve never been politically active.”

By SYDNEY LUPKIN

http://abcnews.go.com 

If not for a stranger halfway around the world, 8-year-old Grant Berg wouldn't be alive today, his mother said.

Grant needed a bone marrow transplant, but after an international search, it was an 18-year-old German college student who came to his rescue in 2011, Grant's mother, Kristi Berg told ABC News. And on Sunday night, Grant and his hero met for the first time at the Los Angeles International Airport.

"I've imagined it so often in my mind and now it is reality," Grant's bone marrow donor, Marvin Zumkley, 22, told KABC-TV, ABC's Los Angeles station. "It was crazy. It was overwhelming, and it was just a good feeling."

A year and a half before the transplant, Grant was diagnosed with aplastic anemia, a rare but serious condition in which the bone marrow stops producing new blood cells, Berg said. This includes red blood cells, which carry oxygen; white blood cells, which fight off infection; and platelets, which mend blood vessels and stop bleeding, according to Dr. Hillard Lazarus, who directs UH Case Medical Center's novel cell therapy program in Cleveland but has not met or treated Grant.

"You need to treat this thing," Lazarus said, adding that it's often unclear what causes aplastic anemia. But only about 600 to 900 people are diagnosed with it every year.

Berg said Grant was getting different kinds of transfusions every week for a year and a half before the transplant.

"For a year and a half, he lived off other people's blood," Berg said. "I can't even count the amount of transfusions he had."

And then Zumkley's bone marrow changed Grant's life, she said. “It means everything to me," she added.

Grant was also born with only part of his cerebellum, so he'll be tested later this year for genetic conditions, she said.

After staying up well past his bedtime to meet Zumkley, Grant fell asleep in the car on the ride home to Temecula, California, Berg said. The plan is for Zumkley to relax for a few days, visit Disneyland and find other ways to enjoy southern California and get to know Grant, she said.

Written by Honor Whiteman

www.medicalnewstoday.com 

Infants born preterm are known to be at greater risk for neurodevelopmental disorders. Now, a new study by researchers from King's College London in the UK brings us closer to understanding why - premature birth reduces connectivity in brain regions linked to cognitive functioning.

First author Dr. Hilary Toulmin, of the Centre for the Developing Brain at King's College, and colleagues publish their findings in the Proceedings of the National Academy of Sciences.

Preterm birth - defined as the birth of an infant before 37 weeks gestation - affected more than 450,000 babies in the US in 2012.

It is a leading cause of neurological disability among children in the US. Babies born preterm are at higher risk of cerebral palsy, autism and attention-deficit hyperactivity disorder (ADHD), among other intellectual and developmental conditions.

For their study, Dr. Toulmin and colleagues set out to gain a better understanding of the brain connectivity among babies born preterm in an attempt to uncover clues as to why preterm babies are more likely to develop neurodevelopmental problems.

The researchers used functional magnetic resonance imaging (fMRI) to analyze the connectivity between two specific brain regions - the thalamus and the cortex - among 66 infants. Of these, 47 were born prior to 33 weeks gestation and 19 were born at full term - between 37 and 42 weeks gestation.

The team says they focused on the connectivity between the thalamus and the cortex because these are the brain connections that develop quickly during preterm infants' care in neonatal units.

Preemies showed reduced connectivity in brain area linked to higher cognitive functioning

Among the babies born at full term, the researchers found the connectivity between the thalamus and the cortex was very similar to that of adults, which the researchers say supports previous findings that infants are born with mature brain connections.

Among the preterm infants, however, the team identified reduced connectivity between areas of the thalamus and areas of the cortex associated with higher cognitive function. This may explain why preterm babies are at greater risk of neurodevelopmental problems later in childhood, say the researchers.

What is more, brain scans of the preterm infants revealed increased connectivity between the thalamus and an area of the primary sensory cortex that plays a role in processing signals from the face, lips, jaw, tongue and throat.

Preterm infants' earlier exposure to breastfeeding and bottle feeding may explain this finding, according to the team.

The team says the earlier a preterm baby was born, the more pronounced the differences were in brain connectivity.

Overall, the team believes their findings bring us a step closer to understanding why infants born preterm are at higher risk of neurodevelopmental problems.

Senior author Prof. David Edwards, also of the Centre for the Developing Brain at King's College, says modern science has allowed the team to assess brain connectivity among preterm infants - something he says would have been "inconceivable" only a few years ago.

"We are now able to observe brain development in babies as they grow, and this is likely to produce remarkable benefits for medicine," he adds.

Dr. Toulmin says the next steps from this research will be to gain a better understanding of how their findings are associated with learning and developmental problems among preterm children as they get older.

www.npr.org 

Over the last week, Baltimore's unrest has captured the nation's attention. Images of burning cars, the sounds of angry protesters and then peace rallies have dominated the airwaves and headlines.

As the city's health commissioner, I heard other stories. I spoke with a 62-year-old woman who had a heart attack a year ago and who had stopped taking her blood pressure and blood-thinning medications. Her pharmacy was one of the dozen that burned down, and neither she nor the other people in her senior housing building could figure out where to get their prescriptions filled. Her pills ran out two days before, and she'd planned to hold out until the pharmacy reopened.

A 55-year-old man called our health department. His mother was "stringing out" her inhalers and now had a cough and difficulty breathing. He also told us he had difficult-to-control diabetes and was using insulin every other day. He now was urinating frequently and reported blurry vision — symptoms of out-of-control diabetes. We called an ambulance to transport them both to the ER.

In the wake of fires and violence, the initial priority for health officials was to make sure that our acute care hospitals were protected and that staff and patients could get to them safely. In the immediate aftermath, our focus was on ensuring that injured patients got triaged and treated.

Nobody knew what lay ahead and how much more violence was to be expected. We worked with hospitals, the Fire Department, and other city and state partners to develop a hospital security plan and to convene daily phone calls with every hospital and health clinic.

As the days went on, we heard from more Baltimoreans. These were not the ones waving signs or appearing on national TV. These were people who were just trying to get by.

There was a 74-year-old woman who had abdominal pain for two days. She stayed in her apartment and put up with the pain rather than seeking care, because she thought she'd heard that her health center was closed. A middle-aged couple worried about their 22-year old son who was suffering from a manic episode. They didn't know who was available to help.

Our health department, under the leadership of Mayor Rawlings-Blake, worked with the Maryland health department and private partners around the city and state to provide these essential services. We set up the Baltimore Healthcare Access List to provide up-to-date and accurate information about closures and hours of operation for hospitals, clinics and pharmacies. We developed and implemented a Mental Health/Recovery Plan that included an around-the-clock mental health crisis line along with teams of licensed mental health professionals who were deployed in affected neighborhoods for group counseling and debriefing.

Things that seemed straightforward often were not. Transferring prescriptions from one pharmacy to another would seem easy. But what happens if the pharmacies are in different chains, or if the one that closed was an independent pharmacy where all records were destroyed? The nearest pharmacy may be just a few blocks away, but what if the patient has limited mobility and even a few blocks are prohibitive?

And, as we saw, what happens when the best-laid plans aren't known to residents? We arranged for individuals affected by pharmacy closures to call one central number — 311. Our health department team would then take care of the rest on a case-by-case basis, arranging for prescription transfers, transportation and medication delivery.

Amid all the news, our public health information wasn't getting through to all our community members. So we mobilized student volunteers from Johns Hopkins and other local universities to go door-to-door in all senior buildings in affected neighborhoods. We visited over 30 churches and knocked on hundreds of doors.

It is now a week after the initial wave of violence and unrest. Our city is quieter, but our work is nowhere near done. As we look to rebuilding and recovery, our efforts must be focused on addressing the needs of all those affected, including the ones whose stories we don't usually hear.

By FREIDA FRISARO

http://abcnews.go.com 

One 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."

www.foxnews.com 

After roughly 40 years, U.S. health regulators are seeking data to see if the cocktail of ingredients in antiseptics used in hospitals, clinics and nursing homes are as safe and effective as they were once considered.

The Food and Drug Administration said on Thursday it is asking manufacturers for more data, including on absorption, potential hormonal effects and bacterial resistance of thehe 'active' ingredients in antiseptics, to see if they are still appropriate for use in a health care setting.

Since the review of health care antiseptics in the 1970s, things have changed, the FDA noted, alluding to a shift in frequency of use, hospitals' infection control practices, technology and safety standards. (1.usa.gov/1EUrzCd)

An independent panel of experts to the FDA raised similar concerns last year. In 2013, the regulator issued a warning to manufacturers, saying it was aware of at least four deaths and multiple infections caused by over-the-counter antiseptics. (1.usa.gov/1DNxOSp)

Commonly used active ingredients in health care antiseptics include alcohol and iodine. Data suggests that, for at least some of these ingredients, the systemic exposure is higher than previously thought, the agency noted.

"We're going to try to answer their questions in great detail as called for, but we believe the FDA already has sufficient data on these products," said Brian Sansoni, a spokesman for American Cleaning Institute (ACI), a trade association for the cleaning products industry.

The FDA said no health care antiseptics were going to be pulled off shelves as of now, and that their review excluded home-use antiseptics such as antibacterial soap and hand sanitizers.

The new data request relates only to health care antiseptics covered by the over-the-counter monograph, a kind of "recipe book" covering acceptable ingredients, doses, formulations and labeling. Once a final monograph is implemented, companies can market their product without having to go through the FDA.

Companies will have one year to submit the data, which the FDA will evaluate before determining if the OTC monograph needs to be revised.

"We're concerned if the FDA takes maybe a too narrow view regarding the safety and effectiveness data – depending how the final rule ends up – they could take effective products or ingredients off the shelves," Sansoni said.

Written by Markus MacGill

www.medicalnewstoday.com 

3D 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.

By Jacque Wilson and Deborah Brunswick

www.cnn.com 

It was just another day with another massive allergic reaction. 

She can always tell when one is coming on. "I just get this overwhelming sense of -- they call it impending doom." Her labradoodle, Moose, starts alerting, licking her hands frantically.

"I'll feel like I'm being stabbed in the stomach, and then it gets hard to breathe and my throat and tongue start swelling. And we have to treat it really fast." 

On that particular day in March, multiple EpiPens didn't slow the reaction. The paramedics who arrived to take Brynn to Greenville Memorial Hospital, or "Hotel Greenville" as she likes to call it, knew her well. When she asked for her security blanket, they knew to hand her her smartphone.

"New day, new crisis," Brynn quips as she tells the story, as if it's about her first day of college or a shopping trip gone wrong. It might as well be. When you're allergic to life, a near-death experience is no big deal. 

Center of attention

Less than a week after her trip to the hospital, Brynn, 21, is back at home in Easley, South Carolina. She lies on her back, her head near the foot of her bed, chattering away as her mom changes the access to her chest port. 

Melissa Duncan, a paralegal by day, dons a mask and surgical gloves before disinfecting the area around the tube that's connected to Brynn's jugular vein. The disinfectant burns, and Brynn's blood pressure hits 150/102. Her heart rate rockets to 128. 

"The meds we have to give her to keep her alive, she reacts to," Melissa says, shaking her head. "Never in a million years did I think I would be doing this. "

Brynn was seemingly a normal kid -- until she wasn't. Yes, she was a fussy baby. Yes, she got sick often as a child, Melissa muses out loud -- but what kid doesn't? Brynn was also incredibly energetic, always the center of attention. Her father, Barry, jokingly rues the day she learned to talk. She started taekwondo at the age of 9 and had her black belt by the time she was 11. That was the same year doctors diagnosed Brynn with IBS, or irritable bowel syndrome. 

"She's always been --" Melissa Duncan pauses. 

"High maintenance!" Brynn fills in with a laugh. 

It wasn't until shortly before her 16th birthday in 2010 that Brynn had her first serious allergic reaction. The next two years became a blur of sick days and doctors' appointments.

Brynn saw specialist after specialist. The gastrointestinologist diagnosed her with gastroparesis, or partial paralysis of the stomach muscles. A cardiologist said she had POTS, or Postural Orthostatic Tachycardia Syndrome -- meaning that when she stood up for longer than a few minutes, her blood pressure dropped, leaving her light-headed and nauseated. A Wake Forest doctor diagnosed her with Ehlers-Danlos syndrome, a connective tissue disorder that causes fragile skin and overly flexible joints. 

After doing hours of research, Melissa, Barry and Brynn came up with their own diagnosis: mast cell disease. They found a specialist online, Dr. Lawrence Afrin, who at the time was working in Charleston. They waited nearly nine months to see him, but hearing him confirm their suspicions was life-changing.

Mast cells are the regulators of your immune system. They're the ones that release histamine when a bug bites, or when you come into contact with an allergen. They basically sound the alarm that lets the rest of your immune system know something is wrong.

Until recently, the only mast cell disease doctors had identified was mastocytosis, which is characterized by "abnormal proliferation and activation" of the body's mast cells -- meaning there are way too many and they act in strange ways. 

But in the last few years doctors such as Afrin have started to recognize that there are many different layers to mast cell disease. For instance, Brynn has mast cell activation syndrome, meaning her mast cells act strangely, but they're not growing in number. 

"It's like I'm living in a 24/7 allergic reaction," Brynn explains simply. 

Fruit, vegetables, milk, soy, nuts, smoke, perfume, the sun -- you name it, Brynn is allergic to it. But it's not really about the specifics; the allergens change depending on how "angry" her mast cells are that day, she says. On good days, she can eat small amounts of plain meat or mashed potatoes. On bad days, even using her feeding tube causes her extreme pain. 

Not everyone with mast cell activation syndrome has it as bad as Brynn does. "Oh God, no," Afrin says when asked. "No, no, no, no." 

But mast cells are located in your connective tissue, including your skin and the lining of your stomach and intestine. They can affect every system in the body, Afrin says, so the disease is capable of causing all the symptoms Brynn experiences.

You have to ask yourself, he says: "Is this poor patient so uniquely unlucky to have acquired so many different, independent problems? Or is it more likely that there is just one thing going on?"

Of course, having a diagnosis didn't make living with mast cell disease any easier. 

In 2012, Brynn was admitted to the hospital 30 times. She started having seizures and episodes of dystonia -- painful, violent muscle contractions that are "scary to see and scary to experience." On multiple occasions, doctors have had to put casts on her legs to prevent her joints from bending in the wrong direction.

"I've seen doctors and nurses step back, kind of like 'What is this?'" Barry Duncan says. 

Every time she went to the ER, Brynn was given a large dose of steroids to calm the inflammation. She's now steroid dependent -- and likely will be for life. 

"We could be here for days, and you still would not understand all the inner workings of Brynn and all of her medical issues," Melissa Duncan says. "But I think the underlying one is the mast cell disease, which is a beast, and continues to become a bigger beast, day by day."

 Living in a bubble

Brynn spent her 19th birthday in the hospital. An allergic reaction made her miss a zip lining trip for her 20th. On December 31, her 21st birthday, when many young adults would be out celebrating the legal drinking age with friends, she was at home still recuperating from Christmas. She had joined the holiday festivities by eating a special pizza -- made with fake bread and fake cheese. 

"It's nasty," Barry Duncan says with a laugh. "It's the worst pizza you've ever tasted." But "for her, the worst pizza you've ever had ... tastes really good."

Brynn dreams about real stuffed crust pizza sometimes. And mozzarella sticks. Occasionally she lets her spunky attitude drop, and you see that she understands the effect her illness has on those around her. 

Her parents have spent weeks sleeping in cramped hospital chairs. Her younger siblings have missed vacations and school ceremonies; they've learned how to inject Brynn with an EpiPen, and how to hold her limbs still during a dystonia episode. 

"There's a lot of guilt that goes along with having a chronic illness," Brynn says. "You feel like a burden. And people can tell you you're not, but no matter what, in your head, you feel that you are."

She has moments when she gets jealous of her high school friends who are doing all the things she can't -- attending college, moving out, finding boyfriends. She and her new friends, others with chronic illnesses she met online, have a saying: "Single and ready to mingle -- as long as you have good health insurance."

And with a giggle, the dark moment passes. Skyping with her friends keeps her spirits up. She's prolific on Instagram, with more than 5,300 followers, and writes regularly on her blog, which is called "Brynn's Bubble." 

"A lot of people with this disease ... do, in a sense, have to live in a bubble, because it's really difficult to get the symptoms under control," Brynn says. "You spend a lot of time alone. And it can be very isolating. But thanks to social media, I haven't felt alone."

Over the last two years, Brynn and her family have made progress in managing her disease. She was one of the first patients in the nation to be put on a continuous IV of antihistamine. Intravenous immune globulin, or IVIG, therapy, when a healthy donor's plasma is used to boost a patient's immune system, cut in half the number of drugs she needs. 

Of course, she still needs a lot -- a compounding pharmacy delivers a box to her house once or twice a week. The meds make her brain foggy. She punctuates conversations with "Where'd that thought go?" But that doesn't stop her from talking. She plans to keep talking until mast cell disease receives the attention she feels it deserves. 

"'You don't look sick' -- that's one of the comments that I get a lot. Or they say, 'At least it's not cancer,' and that's another hard one, because these illnesses can be just as devastating," Brynn says. "The difference is they're not understood. And the only way to change that is to somehow bring awareness to it."

Early in her taekwondo career, Brynn's instructor told her that she could win a match before it even began -- just by staring down the opponent. She plans to fight mast cell disease the same way.

BY SEAN DENT

http://scrubsmag.com 

Pens that don’t work? Socks that cut off your circulation? Cheap key chains? Yep, those sound like some Nurses Week gift failures to me!

I have some suggestions for gifts I think every nurse would appreciate for Nurses Week. Here are two major ones (you can thank me later!):

A real lunch break

• You know, the kind of lunch break that involves leaving the nursing unit, or even leaving the premises all together. The kind where you actually taste your meal instead of inhaling it on the go. Maybe even a full hour-long lunch so we could enjoy the food we eat and take our time getting back on shift.

IOU: A time out

• A certificate that allows you the ability to just call a time out. I’m talking stopping everything, putting your hands in the air and taking a “Calgon moment.” No explanation necessary, just produce the IOU. We should be able to use this IOU whenever the need arises. You could even put an expiration date on it, although I doubt it would take long to use this one up.

Here are a few more random ideas for gifts:

• A valet ticket for parking
• A free lunch (or more than one)
• IOU: One time you get to leave work early
• IOU: One time you get to come to work late
• IOU: One request for a new pot of coffee be made (when the pot is empty)
• IOU: One admission paperwork completion
• IOU: A free breakfast

Don’t get me wrong, I’m always appreciative of the recognition, but I think if we’re going to celebrate all things nursing, then the gifts should be worth the year-long wait!!

Any other suggestions? What would be a great gift for you this Nurses Week?