boston childrens hospital

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Calling All Gene Detectives: Solve Diagnosis Mysteries To Win Contest, Play Role In Film

 

What in the world is wrong with Dr. Katia Moritz?

When she was 43, Moritz felt like she had life all figured out. Always a high-energy extrovert, she would begin her workdays as a clinical psychologist treating severely ill patients at 7:15 a.m., and get home in time to be with her three young children after school.

There was no time for slacking in a life so full, so when she was scheduled for a minor diagnostic procedure that involved inserting a tube down her throat to look into her stomach, she figured she’d recover from the sedation and come right back to work that afternoon.

But afterward, she felt so sick she went to bed and slept for three days. “I felt like I was poisoned,” she recalls. “It felt like the worst flu ever. I had a low grade fever, my body hurt, everything hurt. After a few days, I improved, but I never felt well. And then it became an episodic illness — a few days later I’d get it again, and a few weeks later I’d get it again.”

Moritz, now 48, has never been the same. For the last five years, she has seen dozens of doctors, trekked to leading medical centers around the country in search of a diagnosis and cure, to no avail. Her fevers come and go, and other symptoms; sometimes it’s hard to swallow, even walk.

Dr. Katia Moritz shares a happy post-interview moment with 5-year-old Jeremy, who is also undiagnosed. (Courtesy "Undiagnosed")

Dr. Katia Moritz shares a happy post-interview moment with 5-year-old Jeremy, who is also undiagnosed. (Courtesy “Undiagnosed”)

If this were the television show “House,” or the popular New York Times column “Think Like A Doctor,” her story would have a neat ending, a solution to her mystery. But as Moritz has learned in her exhaustive travels, in real life, a great many people — millions of them, she estimates — are clearly very sick but never get the answer that could help them get well. Call them “the undiagnosed.”

Now, she’s working on a documentary on their plight (see the trailer above) and — in a lucky convergence — she’s combining forces with the bright minds at the cutting edge of genomic research to seek answers.

Five undiagnosed patients from the documentary are the focus of a new contest run by Boston Children’s Hospital, titled “CLARITY Undiagnosed.” Aiming to advance the field of genomic medicine — using a patient’s gene information in the clinic — it offers a $25,000 prize to the research team that best solves the patients’ diagnostic mysteries.

In an unusual twist for such an exercise in competitive crowd-sourcing, the teams may also appear in the documentary that Moritz is creating. Titled simply “Undiagnosed,” It is still filming and thus far chronicles the patients’ struggles but has no happy endings. (The medical detectives can also opt out if they’re camera-shy.)

“The probability that we’re going to find something in any of these individuals is about 50 percent.”

– Dr. Isaac Kohane

Up to 30 competing teams in the CLARITY contest will be given each patient’s full medical record — no small file, given the medical odysseys they have endured. The contestants will also be given extensive data on the patients’ genes.

Teams have until June 25 to apply, says Dr. Isaac Kohane, chair of Harvard Medical School’s Department of Biomedical Informatics, and they will then have two months to work. Results will be announced in November.

“I would say that, based on the performance from the Undiagnosed Disease Program at the National Institutes of Health, the probability that we’re going to find something in any of these individuals is about 50 percent,” Kohane says. Continue reading

Outpouring On Beloved Prouty Garden Continues: Traumatized Kids Need It

The fountain in Prouty Garden at Boston Children’s Hospital (Jesse Costa/WBUR)

The fountain in Prouty Garden at Boston Children’s Hospital (Jesse Costa/WBUR)

News this week that the Prouty Garden at Boston Children’s Hospital can be bulldozed continues to draw impassioned pleas to reconsider the garden’s fate. Here, Dr. Elliott B. Martin, Jr., a psychiatrist at Newton-Wellesley Hospital and Assistant Clinical Professor of Psychiatry Tufts University School of Medicine, adds his thoughts. (This is the second powerful letter we’ve received from defenders of the garden. We also welcome letters from the other side.)

I am writing in hopes of continuing the narrative around the fate of the Prouty Garden at Boston Children’s Hospital. I have been involved now for several months in the effort to save the therapeutic space, and the letter yesterday from Ms. Ellen Gilliam has inspired me to build upon her story, in hopes that others will add their own chapters.

I, too, have worked at Boston Children’s Hospital, as a physician, specifically as a psychiatrist. Until recently, the best kept secret at Children’s Hospital had been that there is in fact an inpatient psychiatric unit there. At any given time the hospital cares for some of the most grievously traumatized children you can imagine. These are kids, ranging from seven to seventeen years old, who have suffered ungodly physical and sexual abuse, at times since infancy. These are kids who have suffered from neglect, at times to near death. These are kids with profound depression, who have tried to commit suicide, very often many times over.

Therapeutic options in such cases are extremely limited, often amounting to time, containment, support, and most importantly, love. Many, if not most, of the physically ill children at the hospital at the very least know the love of their families. For the psychically wounded there is precious little love. As we would often observe on the inpatient unit, very few people sent get well cards to the psychically ill. The clowns never came there. The celebrities, on their visits to sick children, were carefully shuttled past the double-locked doors designed to be disinviting.

In this environment two therapeutic modalities stood out as having had immediately tangible, positive effects on these children. The first was the weekly visit from the therapy dog, and the second were the daily supervised excursions to the Prouty Garden. For kids otherwise confined day and night to a tiny, cordoned off piece of hospital property these fifteen to thirty minute trips were their only connection to the greater world, the ‘world outside’, as one horrifically abused seven year old boy once described it to me. To see these kids playing in the garden one might even mistake them for “normal’ kids. To see them interact with children in wheelchairs, with children wheeling IV poles, with children sentenced to die and whose parents had nowhere else to cry, one might think they were even more than normal, that they were, at least for a few minutes, special. Continue reading

Grandmother’s Last-Ditch Plea: Save The Garden At Children’s Hospital

A 65-foot dawn redwood tree slated for removal if the plans to build on the site of Prouty Garden proceed (Jesse Costa/WBUR)

A 65-foot dawn redwood tree slated for removal if the plans to build on the site of Prouty Garden proceed (Jesse Costa/WBUR)

In response to the Boston Landmarks Commission’s vote to reject landmark status for a much-loved garden at Boston Children’s Hospital, Ellen Gilliam — a librarian in Portland, Me., and the grandmother of a child recently treated at Children’s — sent in this poignant and powerful letter:

Last summer, my newborn grandson was a patient for several months at Children’s — first in the neonatal intensive care unit, then on a surgical inpatient floor. Fortunately, with the help of the knowledge, skill, expertise, experience and dedication of the medical and support staff there, he was able to recover from surgeries and infections in the aftermath of a serious birth defect and to ultimately go home from the hospital on the day before his three month birthday.

Were it not for the Prouty Garden, we might have lost our sanity while our little guy was fighting for his life.

My family and I certainly know the confines of the NICU there. In fact, we experienced the contrast between the spacious patient and family accommodations at Mass General’s NICU, where my grandson received his initial post-surgical intensive care in a private room with sleeping space for multiple parents, and the much tighter and less convenient NICU quarters at Children’s, as described in a recent Boston Globe article by Andrew Ryan.

That said, I must also add that were it not for the Prouty Garden, we might have lost our sanity while our little guy was fighting for his life. Family caregivers are on their own at Children’s Hospital when it comes to managing the abject anxiety and heartache that accompanies a child’s illness. Indeed, I was surprised by the paucity of organized or informal options for helping family members cope with the stress. The medical staff is compassionate, but their jobs are to tend to the science and medicine of healing the patients. Rightfully so.

The author's son-in-law and grandson take in a quiet moment in the Prouty Garden, August 2014. (Courtesy)

The author’s son-in-law and grandson take in a quiet moment in the Prouty Garden, August 2014. (Courtesy)

Meanwhile, the one oasis for family was the Prouty Garden. Stepping into the cool, fresh-air of the garden, with its blooming roses and hydrangeas, its paths meandering by a water fountain and under spreading trees, one could finally exhale the pent-up terror and feel the lightness of human connection with the good earth.

When the baby was well enough to be moved to a room on the surgical floor, one of the first goals was to get him out into the fresh air of the Prouty Garden. We sat under the trees with him in a stroller, his IV pole supporting his infusions into his central line, and we had ice cream and basked in the warm sunshine. My son-in-law let himself stretch out and kick a ball around with a child who spoke no English, the sibling of another patient whose mother was quietly tending to what looked to be other siblings on a blanket on the grass. On the anxious night before a big surgery, we sat out under a Prouty Garden umbrella with a bottle of wine and reflected on how lucky we were to be in Boston, where the little guy could get the care he needs to survive and hopefully have a normal life. Continue reading

Related:

Panel Says Beloved Garden At Children’s Hospital Can Be Bulldozed

Prouty Garden at Boston Children's Hospital (Jesse Costa/WBUR)

Prouty Garden at Boston Children’s Hospital (Jesse Costa/WBUR)

Andrew Ryan of The Boston Globe reports here:

Prouty Garden, long a refuge at Boston Children’s Hospital for ailing youngsters and their families, can be bulldozed to make way for an expansion that includes a new neonatal intensive-care unit after a key city commission voted Tuesday night to reject pleas to protect the space as a landmark.

After an emotional hour of public comment, the Boston Landmarks Commission voted 7 to 1 to deny landmark status, effectively allowing the hospital expansion to proceed. Commissioners acknowledged they had grappled to find the greater good in a dispute in which the goal of both sides was to heal and comfort sick children.

The “Save Prouty Garden” Facebook page confirms that report here. WBUR’s Deborah Becker and Lynn Jolicoeur reported on the long-running fight over the garden’s fate back in 2013 here. The report begins:

Noise from traffic, construction and sirens dominates this neighborhood of some of the nation’s premier hospitals — but not in one spot tucked among the buildings of Boston Children’s Hospital.

The space many refer to as an oasis is called Prouty Garden, a half acre of grass, mature trees, flowers and fountains. It’s been a sanctuary for stressed families, sick children and hospital staff since 1956, when a patron created and endowed it. A Scientific American article last year called it “one of the most successful hospital gardens in the country.” That same article quotes research showing the benefits of hospital gardens in reducing anxiety, pain and blood pressure.

But now, citing a desperate need to expand, Children’s Hospital has developed plans to build a 10-story, 500,000-square-foot building on the site of the garden. The decision is not final. But many patients’ families are distraught.

The Globe reports that Anne Gamble, who led the charge to preserve the garden, said after the Tuesday evening vote that she “needed time to consider the next course of action.”

Cautionary Tale: Vomiting Bouts And False Positive On Urine Test For Pot

Hollis Tufts, the teen who tested positive -- incorrectly -- for cannabis use in a cautionary tale published in the journal Pediatrics (Courtesy of the family)

Hollis Tufts, the teen who tested positive — incorrectly — for cannabis use in a cautionary tale published in the journal Pediatrics (Courtesy of the family)

The title got me: “13-Year-Old Girl With Recurrent, Episodic, Persistent Vomiting: Out of the Pot and Into the Fire.”

What pot? What fire? Oh, dear, recurrent vomiting. What troubling case report was this, in this week’s Pediatrics journal?

The case, written up by Dr. Diana Felton of Boston Children’s Hospital and colleagues, was indeed troubling, but also instructive, on two counts:

First, its main lesson: a medication for gastrointestinal problems — a proton pump inhibitor called pantoprazole — can cause a false positive result on a urine test for marijuana use.

And second, though marijuana is generally known to have anti-nausea effects, it has been increasingly recognized over the last decade that heavy, long-term use can bring on cycles of vomiting, a phenomenon called Cannabinoid Hyperemesis Syndrome. (It can also bring on compulsive bathing in hot water. I know. Sounds crazy. But I’m not making it up. More on that later.)

She remembers the thought, “What on earth are they saying? This is crazy! All we’ve ever done is care for our child…”

Dr. Felton and colleagues write that as the use of organic and synthetic cannabinoids — pot-like compounds — increases, “the number of patients with Cannabinoid Hyperemesis Syndrome will surely grow.”

Now to their tale. The patient was a 13-year-old Massachusetts girl who suffered from recurrent bouts of vomiting, a condition known as Cyclic Vomiting Syndrome. She was on her fourth bout of vomiting in six weeks when she was brought in to the Emergency Department, retching.

Hit by a stroke while still in the womb, the girl could not speak, and had been hospitalized repeatedly for such vomiting attacks. This time, among other tests, “the treating physician opted to send a urine toxicology screen to evaluate for possible Cannabinoid Hyperemesis Syndrome.” It came back positive for cannabinoids. Social services got involved. A protective order was filed.

“Given the patient’s severe physical and developmental limitations, it was clear that she was unable to access or administer the cannabinoids herself,” the paper says.

Let’s just pause for a moment to put ourselves in the place of the patient’s parents. I imagine myself exploding: “So you’re accusing us of giving our disabled daughter so much pot that it made her throw up? Are you out of your mind???”

Not too far off, says Jessica Tufts of Topsfield, whose daughter, Hollis, now almost 15, was the patient in the paper. She remembers the thought, “What on earth are they saying? This is crazy! All we’ve ever done is care for our child…”

“They bring me into a room and they say, ‘We just wanted to let you know that Hollis has tested positive for cannabinoids,” she recalls. “I said, ‘How on earth could she be getting it? We don’t smoke it. We don’t cook it. We never even touched it. So how is she getting it?’ I flew into a panic because she can’t say, ‘Somebody at school is feeding me pot brownies or whatever.’ We were trying to figure out all the points of contact that could possibly explain it.”

And, “We got progressively more terrified, because, as the mom of a child who’s going to be limited all her life and can’t tell you what’s going on, your worst nightmare is that some caregiver who is out of your control has done something to her.” Continue reading

How 3D-Printing Helped A Little Girl With A Rare Facial Defect

Check out this excellent story about a little girl named Violet born with a rare defect, a Tessier facial cleft, that left a fissure in her skull, and how 3D-printing is helping doctors take on these kinds of complicated surgeries. The piece is in today’s The New York Times and written by health reporter and CommonHealth contributor Karen Weintraub, who offers a little background:

Violet Pietrok was born nearly two years ago without a nose. Her eyes were set so far apart that her mom compared her vision to a bird of prey’s. There was a gap in the skull behind her forehead.

There was no question she would need drastic surgery to lead a normal life. But few surgeons have seen patients with problems as complex as Violet’s. Her parents, Alicia Taylor and Matt Pietrok, who live near Salem, Oregon, brought her to Boston Children’s Hospital, to Dr. John Meara, who had operated before on kids with Tessier facial clefts.

As part of Children’s Pediatric Simulator Program, Meara was able to get several 3D printed models made of Violet’s skull. By handling and slicing up the models, he got a better sense of what had gone wrong and how best to fix it.

Such 3D-printing is becoming more commonplace in complex surgeries, allowing doctors views and knowledge they can’t get on their screens.

Continue reading

If You Build A Crew Program For Overweight Kids, They Will Row — And Get Fitter

photo
OWL On The Water participants bring a shell out of the Community Rowing boathouse in Brighton, and to a dock on the Charles River. (Jesse Costa/WBUR)Alexus Burkett, left, helps carry the shell toward the water. (Jesse Costa/WBUR)(Jesse Costa/WBUR)(Jesse Costa/WBUR)(Jesse Costa/WBUR)Coach Sandra Cardillo instructs the kids before they go out onto the water. (Jesse Costa/WBUR)(Jesse Costa/WBUR)Rowing coach Kate Simeon instructs the kids out on the Charles. (Jesse Costa/WBUR)An OWL On The Water boat moves past the Community Rowing facility as daylight fades. (Jesse Costa/WBUR)

There was no comfortable place for 17-year-old Alexus Burkett in her school’s typical sports program of soccer and lacrosse and basketball.

“They don’t let heavyset girls in,” she says.

Alexus was “bullied so bad about her weight,” says her mother, Angelica Dyer, “and there was no gym that would take her when she was 14, 15 years old. There was no outlet.”

But Alexus has found a sports home that is helping her bloom as an athlete: an innovative program called “OWL On The Water” that offers rowing on the Charles River specifically for kids with weight issues.

She has lost more than 50 pounds over half a year, but more importantly, says her mother, “They’ve given me my daughter’s smile back.”

Alexus Dwyer during warm-ups before instruction time. (Jesse Costa/WBUR)

Alexus Burkett stretches during warm-ups before “OWL On The Water” instruction time. (Jesse Costa/WBUR)

“It’s given me a lot of good strength and it’s making me more outgoing,” Alexus says. “We’re all best friends and we’re all suffering with the same problem — weight loss — so we’re more inspiring each other than we are competing against each other.”

OWL On The Water offers a small solution to a major national problem: According to the latest numbers, 23 million American kids are overweight or obese, and only about one quarter of 12-to-15-year-olds get the recommended one hour a day of moderate to vigorous physical activity. Heavier kids are even less likely to be active, and only about one-fifth of obese teens get the exercise they need, the CDC finds.

“I know I need to be active, but please don’t make me play school sports!” That’s what exercise physiologist Sarah Picard often hears from her young clients at the OWL — Optimal Weight for Life — program at Boston Children’s Hospital that sponsors OWL On The Water.

Many gym classes still involve picking teams, “and my patients are the ones that are always picked last,” she says. “You’re the biggest one, you’re the last one, you’re picked last, and you’re uncomfortable.”

They are strong, powerful people.

– Sarah Picard

School fitness testing is important, Picard says, but it, too, can be an ordeal: “I have kids who sit in my office and tell me that they didn’t go to school for a week because they wanted to miss the fitness testing,” she says.

While many a coach might see bigger bodies as poorly suited to typical team sports, Picard sees them as having different strengths. Particularly muscular strength.

“What I’ve observed is that these kids are much better at strength and power-based activities,” she says. And rowing is particularly good for them, she says, because though it is strenuous, it is not weight-bearing, and thus more comfortable for heavier bodies — yet a heavier, strong body can pull an oar much harder than a smaller person’s body. The program begins by building on that muscular strength, she says, and then works on aerobic fitness. Continue reading

Lessons From Boston Children’s: When Hackers Attack Your Hospital

Boston Children's Hospital (Wikimedia Commons)

Boston Children’s Hospital (Wikimedia Commons)

Last April, during the parents-versus-hospital custody dispute over teenager Justina Pelletier, Boston Children’s Hospital found itself under cyberattack, apparently by the hacker group Anonymous. The hospital’s website was flooded by traffic that hindered its operation, and other online operations were affected as well.

The assault brought widespread condemnation — BetaBoston called the attackers not activists but “criminals” — and subsided after about a week.

Now, Dr. Daniel Nigrin of Children’s offers some details and lessons from the assault in the latest New England Journal of Medicine: When Hacktivists Target Your Hospital.

He writes that the attack began with a warning message on Twitter relaying a set of demands, and then the hackers posted “the home and work addresses, phone numbers, and e-mail addresses of some of the people involved in the case (a tactic called ‘doxing’). The hackers also posted technical information about the hospital’s public-facing website, suggesting that it might become a target.” A few weeks later, the “distributed denial of service” — the flood of traffic — attack began.

Nigrin writes:

Over the course of the next week, the hospital was subjected to several other attacks that were intended to do more than affect its Internet connectivity. These included multiple attempts to penetrate its network through direct attacks on exposed ports and services, as well as through the use of “spear phishing” e-mails, which are intended to get recipients to click embedded links or open attachments that would provide a means for the attackers to gain access to the portion of the hospital’s network behind its firewall.

No patient data were damaged or exposed, Nigrin writes, but the experience underscores the important of planning for the possibility of losing Internet connectivity. Continue reading

Complex Cases Of ‘Parent-Ectomy,’ From New Yorker To Boston Globe

(An EPA photo, 1973, via Wikimedia Commons.)

(An EPA photo, 1973, via Wikimedia Commons.)

Is this a trend? A pendulum swinging? First came the heartbreaking story in the Dec. 2 New Yorker magazine of a single mother who left her three-year-old son alone in his crib one day to go to work, and lost custody of him — never to regain it again, no matter how she tried. It’s headlined ‘Where Is Your Mother?‘  I read every word with mounting horror as it became ever clearer that in the wake of her one mistake — admittedly a very bad one — and her inability to persuade the legal system to give him back to her, Niveen Ismail would lose her beloved son forever.

Now, the Boston Globe is running an investigation into cases of “medical child abuse” — in which parents are accused of hurting their children through medical interventions and can lose custody if they are ruled a threat. The Globe’s story focuses on a dispute between Boston Children’s Hospital staffers and a West Hartford couple, Linda and Lou Pelletier, whose 15-year-old daughter, Justina, has been hospitalized at Children’s for months. I read every word of this one, too, admiring the reporters for wading into a very contentious tale, and imagining the pain of parents deprived of contact with a very sick child. Then I got a shock at the end of today’s story: The case is still live, its ending unclear, a decision expected soon: From today’s story, Frustration On All Fronts In Struggle Over Child’s Future:

In the bitter cold of last Thursday morning, on the final day of the trial to determine Linda and Lou Pelletier’s fitness as parents, Juvenile Judge Johnston prepared to hear testimony from the witness at the center of it all. Justina was wheeled into the fourth-floor courtroom of the Edward Brooke Courthouse in Boston. Continue reading

Knees, Food, Periods: Top 10 Medical Tips If Your Daughter Plays Sports

(AP Photo/Gerald Herbert)

(AP Photo/Gerald Herbert)

You could call this “Title IX Medicine.”

Title IX, of course, refers to the landmark 1972 anti-discrimination law that gave huge added impetus to school sports programs for girls, helping create cohorts of more athletic grrrrrrrls.

In Title IX’s 40-plus years, American girls’ participation in high-school and college sports has jumped more than 10-fold to well over 3 million. That means many stronger, healthier girls — but it also means more girls at risk for sports-related injuries and what’s known as the Female Athletic Triad, a worrisome mix of poor nutrition, menstrual dysfunction and danger to bone health.

This week, Boston Children’s Hospital announced the creation of its new “Female Athlete Program,” aimed at treating “the entire female athlete – not just a single injury.”

“We know that the build of girls — both their musculature and bone structure — is different than boys’, as is their hormonal milieu,” said the program’s co-director, Dr. Kathryn Ackerman. “We really need to start tailoring our care of these athletes in a slightly different way.”

Certain specific issues need extra attention among girl athletes, she said. They’re at a five to eight times higher risk of anterior cruciate ligament knee injuries. “Aesthetic” activities like ballet tend to be linked with higher risks of eating disorders. If menstrual cycles become abnormal, bone development could suffer.

Some articles suggest that girls’ soccer is second only to men’s football in terms of concussions.

The new program aims to contrast with the traditional piecemeal approach to girls’ injuries and other health issues, Dr. Ackerman said. For example, “A girl comes in having sustained multiple stress fractures, and no one has asked her about her menstrual status or her calcium or Vitamin D intake or her overall caloric intake.” Some studies, she said, suggest that up to 60 percent of girl athletes have at least one component of the Female Athlete Triad: eating dysfunction, loss of menstrual cycle or low bone density.

Dr. Ackerman, herself a former national team rower, and the program’s co-director, Dr. Martha Murray, an orthopedic surgeon with a swimming background, kindly generated this list of their top 10 tips for parents of girl athletes. Dr. Ackerman expands in the comments below.

Dr. Kathryn Ackerman (Courtesy BCH)

Dr. Kathryn Ackerman (Courtesy BCH)

1. Your daughter can minimize her risk of ACL (anterior cruciate ligament) injury with a simple training program.

It would include hamstring strengthening, landing bio-mechanics, core stability and overall muscular balance. More details in the program’s ACL handout.

2. She needs to be getting good nutrition to play well, especially enough calories and the right amount of calcium and vitamin D.

Calorie counts depend on a girl’s level of activity and growth, but she should be getting 1,300 milligrams of calcium a day until she’s 19, then 1,000 milligrams a day until menopause, when calcium again needs an increase. Vitamin D recommendations vary, but many bone experts recommend at least 800 international units a day for a blood level of at least 30. More details on nutrition here. Continue reading