Author: Children’s Hospital Boston staff

by Michael Agus, MD – director of Children’s Medicine Critical Care Program

Day 4

The day started with a proud smile and high five from the HUEH resident who wryly bragged, “I told you I wouldn’t need all that airway equipment.” The child had been safely transported and the surgeon had successfully removed the pebble from her trachea.

The routine has begun to set in at this point, but admissions were few on this Sunday. The weather, which had until now been in the 70s with scattered rain, hit the 80s with strong sun. With this change, the temperature in the interior of the medical tents rose to above 100F with extremely high humidity. Slight fevers are no longer clinically significant, standard intravenous fluid calculations no longer apply. Thanks to the NGOs, drinking water is plentiful and those patients, who are capable, work hard to maintain adequate hydration. The rest are dependent upon IVs or attentive family members to keep them hydrated.

Two children were doing well after their overnight emergency surgeries for perforated ileum due to typhoid and an incarcerated hernia. Their weary parents stood at their bedsides, calming them, cleaning them, cooling them and advocating for an exam or an IV check whenever possible. I stumbled upon several pediatric endotracheal tubes while searching through internationally donated supplies. These may become useful in the days to come.

I ended the day with a video chat with my three boys. They were equally interested in the child who had the pebble successful removed as in the curiosity of taking a freezing cold shower in a boiling hot country.

Day 5

When I arrived the hospital campus was packed with of hundreds lined up at the adult and pediatric triage tents. After several hours in line in the hot sun, the visitors would finally get attended to by the hospital staff. The hospital hands out food trays and food tickets to those waiting in lines, which inevitably causes a stir, and sometimes a bit more, especially when the tickets run out.

I was invited to attend the HUEH pediatric faculty meeting where I met with the chair of pediatrics and her fellow pediatricians. We discussed what resources PIH might be able to provide HUEH on an ongoing basis.  The pediatric chair and staff expressed their desire for intermittent visits by various pediatric subspecialists who are often difficult to locate in Haiti. They also expressed their deep appreciation for the assistance that they have already received. We discussed the prospects for continuing to elevate the level of care provided in the pediatric tents. The pediatric office building had been condemned shortly after the quake and all remaining equipment that had survived had since disappeared.

As I rounded with the residents in the afternoon to get updated on the admissions for the day, I met two more boys with typhoid fever, one with sickle cell crisis and acute chest syndrome, and one with delirium thought due to typhoid, but which turned out to be due to carbon monoxide poisoning due to burning trash in his tent village. Although the level was high enough (29 percent) to warrant entry into a high-tech hyperbaric chamber for treatment, we instead maximized oxygen delivery with the resources at hand, using oxygen shared evenly between him, a baby with TB and the child with acute chest syndrome.

I signed out to Kevin and his night colleagues to keep an eye on all three. Just before I rolled out, a worried father carried in his 10-year old lethargic son, covered in hundreds of pox – chicken pox. We quickly rushed him back out of the tent and brought him to the isolation tent, transferring the girl with resolving diphtheria back into one of the main tents.

This was the first 24 hour period without losing a patient, though several had decompensated. The discussions about long term support for the hospital are very rewarding.  A busy day, and judging by my headache, one when I should have drunk even more than I did.

Day 6

I awoke to another beautiful day in Haiti, though now I knew enough to understand that this would inevitably lead to unbearable heat inside the Pediatrics tents by midday. I decided today would be an infrastructure day. I found a roll of duct tape and together with my interpreter we secured all the key plugs into their connecting power strips on the web of extension cords that powered the one or two fans in each tent. We made sure all the canvas flaps were off the windows. But it wasn’t enough – later in the day a premature baby in one of the incubators in the NICU reached near fatal temperatures as his plastic, insulated home absorbed all the heat in the tent. He was rescued in time, however, by HUEH staff. A staff member estimated temperatures in the tents at over 100F.

I also had a disappointing food related moment during the day. I have been enjoying delicious rice and beans for breakfast and dinner, and eating energy bars for lunch. I admit that I have been eyeing the MREs, or US military prepared “Meal, Ready to Eat”, that another NGO working at HUEH often have. They appear to be multi-course meals in a bag with bread, main course and dessert. I have yet to get my hands on one. When I was wandering through their storage area in search of medication burettes, a commodity in these parts, I came upon a group of volunteers with more than 20 Domino’s pizzas. It looked like they were still hot. I secretly got on the walkie-talkie to alert my PIH colleagues that there was pizza to be had, and one immediately pointed out over the radio that secrets aren’t very well kept when they are announced over a walkie talkie. I moved quickly back to the pizza area before anyone changed their mind only to find that there were no vegetarian pizzas – all meat. For a Kosher guy, this was a low moment.

The day ended with a significant step forward for the pediatrics tents. In concert with PIH and HUEH pediatric physicians and nurses, we implemented a medication administration record for the bedside chart. Though not computer charting, it provides a safe, reliable method to know at a glance what medications the patient is on, and when they are due.

Stay tuned for more coverage of Agus’s time in Haiti.

Media expert Michael Rich, MD, MPH, director of the Center on Media and Child Health at Children’s Hospital Boston, answers your questions about media use. Last time, he discussed if what goes on in the brain during a 3D movie.

Here’s this week’s question:

What’s the harm in handing off your iPhone to your toddler for a little distraction? It all depends on how you look at it.

There are an increasing amount of iPhone apps created specifically for your children. Whether they’re educational or not, is up in the air.

Children’s media expert, Michael Rich, MD, MPH, talks to Parenting this week about the pros and cons of letting your tot take over your phone.

Do you have a question about your child’s media use? Ask it today!

by Michael Agus, MD –  director of Children’s Medicine Critical Care Program

A few weeks ago, multiple waves of teams from Children’s Hospital Boston left under the auspices of Project Hope for the USNS Comfort, which remains anchored in the harbor of Port-au-Prince. As Comfort’s mission began winding down, Robert Truog, MD was able to transfer and join a land-based effort already underway through Partners In Health (PIH). I was scheduled for the Comfort as well and due to Bob’s efforts was able to re-deploy to the same site right after he left.

Day 1
I boarded a plane early in the morning on Thursday, March 4 from Boston to Miami. In addition to a large pile of energy bars, mosquito netting and a camping pillow, I brought donations from my kids’ school, including stuffed animals and drawing pads from my 1st grader’s class.

The front page of The Boston Globe the prior day had pictured Cardinal O’Malley visiting sick children in a tent at a Catholic hospital in Haiti – St. Francois de Sales. I was able to use the picture to show my 3 sons (ages 13, 10 and 6) where I would be the following day. In the airport in Miami, I ran into the Cardinal and we discussed his and my trips. He expressed continued amazement at what he described as the worst human disaster of our time.

I boarded the packed plane to Port-au-Prince along with over a hundred missionaries from various groups, many singing spiritual songs as they found their seats. Several Haitians were among the passengers as well. A serious mood pervaded the air, now almost two months after the earthquake. Even the pilot acknowledged the two populations that filled the plane.

As we made our final approach into Port-au-Prince, we could see the USNS Comfort still anchored nearby, and although I could hardly make out collapsed buildings, far more obvious were the thousands of tents lining streets, filling parks, with hardly a single uncovered piece of land in the immediate area. In stark contrast was the beautiful mountain range towering above the valley which surrounds the city. I was met by a representative from Partners In Health who brought me to the walled, gated compound where the volunteers stay in tents. I was welcomed by the current cohort of volunteers, primarily from numerous Boston hospitals, including physical & occupational therapists, nurses and physicians.

Day 2
At 6:00 AM I breakfasted with the overnight volunteer team members who were bussed back from the hospital after their shift. I joined the day team and we rode through the battered streets of Port-au-Prince to the University Hospital, the only teaching hospital in Haiti. The hospital campus sits a few hundred yards from the devastated government capitol building which remains a caved-in memorial.

Filling the parks next to the once grand buildings are thousands of tents, some of high quality donated by foreign governments, others of sticks and tarps. And yet the streets are bustling with cars, brightly colored buses, pedestrians and vendors, many of whom have clearly moved their wares outside of cracked and crumbling stores and onto the sidewalk.

Walking around the hospital campus was a difficult combination of depression and inspiration. There were hundreds of children and adults cared for in dozens of long, overheated, overcrowded tents. Yet the Haitian faculty and staff, together with multiple NGOs and PIH were able to provide various coordinated aspects of care.

The Pediatric tents are grouped together in seven long tents, each one housing up 20 beds and cribs and one isolation tent which housed a patient with diphtheria. The tents each cater to different age groups and acuities. I spent most of my time in the acute care tent, called the Pediatric ER, but where patients may stay for days until they are well enough to move to a lower acuity tent. Many patients had one or two family members sitting and sleeping by their side, while others did not have any.

I spent the day supporting the Haitian medical residents, all of whom had suffered some sort of personal tragedy including the loss of one of their rank, a resident who was visiting with her family at home in between shifts. The majority of the dozen or so residents returned to work after the earthquake. The medical students and interns who should have been part of the care team had not yet started their year when the earthquake struck.  They still have not begun to work, stretching the care team extremely thin.

Children in these tents are almost exclusively sick with illnesses that are not directly related to the quake. The orthopedic injuries have largely been treated and those who were critically injured have already succumbed. Crowded with their families into tents or shacks without running water and little food, spread of communicable diseases is rampant with common diagnoses including TB, typhoid, malaria, or some combination of the three.

Special needs children, some of whom have lost track of their caregivers, are particularly vulnerable. I spent a large part of the day caring for a child with seizures and respiratory failure, intubating and utilizing a donated LTV-1200 ventilator for the first time in the pediatric tent. Ventilators and acupuncture needles are easier to find than tegaderms and diapers. This child survived her illness, but another was not as lucky that day.

At 9 pm the night reinforcements arrived, including fellow Medicine ICU colleague Kevin Waterman, CCRN. Kevin joined the effort in Haiti with 30 hours notice and no hesitation.

Day 3
I arrived for the day shift after hearing from the overnight crew about yet another child lost despite their best efforts. I have learned that by the time patients have made the trek from a distant neighborhood or city, they are often much sicker than when their parents first made the decision to bring them in. Newborns delivered in the tent next door to the pediatric ER have the best shot of receiving timely care, though with incubators and reliable electricity in short supply, thermoregulation (commonly compromised in premature babies) can be an absolute requirement for survival. Almost nightly members of the overnight pediatric team must respond to the cries of a mother in labor and assist in the delivery while the main OB team is involved in other pressing events.

I treated a 1-year old who aspirated a pebble on her birthday three days prior and had been in severe respiratory distress ever since. She was in need of specialized equipment to safely extract the oblong stone, which was lodged deep in her trachea. PIH staff located a surgeon and equipment in two locations in the country. As my shift ended and the HUEH pediatric resident prepared to transport her to the nearer location, I quickly reviewed various rescue techniques in case the patient came into trouble, including holding her upside down by her legs and banging the stone out – obviously not an optimal mode of extraction.

Stay tuned for more coverage of Agus’s time in Haiti.

An amazing new software program developed by Gil Alterovitz, PhD, a research fellow in the Children’s Hospital Informatics Program, that turns gene and protein expression data into music, could help doctors hear whether their patients’ health has taken a turn for the worse.

WBUR recently did a story on the new software. “We felt that music, in some sense, can serve as a translator,” Alterovitz said in the piece. “There’s more and more information presented, so…we need a way to present it to the brain…in a way that it can handle it.”

We recently did a story on Alterovitz’s work in Vector, our research magazine, and Technology Review did a cool audio/video presentation that compared the sounds of sickness to the sounds of health.

By Jonathan Kraft, president of The Kraft Group and New England Patriots

As a long-time supporter of stem cell research, I’m proud to announce the launch of a new Children’s Hospital Boston Web site that we hope will demystify the science of stem cells and answer some of the public’s questions about them. For the past three and a half years, my wife, Patti, and I have served as co-chairs of Children’s Hospital Boston’s Stem Cell Task Force because we believe that stem cells hold incredible promise for the future of health care. During this time I’ve gotten to know Len Zon and George Daley, the two physician-scientists who head up the hospital’s Stem Cell Research Program, and I believe that the work they are doing will revolutionize health care.They’ve explained to me how stem cell research will open the door to each of us creating our own personalized repair kits, a way in which we could replace damaged cells with healthy cells, potentially eliminating years of pain, suffering and devastating economic consequences from diseases that now take a heavy toll on all of us. We could vastly improve the quality and length of our lives and especially those of our children.

In talking with Drs. Zon and Daley, I’ve come to believe that there’s no greater opportunity to change science and medicine – and improve and save lives – than through stem cell research. As a businessman, I know the economic cost of maintaining the status quo versus investing in change. The United States is spending trillions of dollars each year to treat – not cure – diseases like diabetes, sickle cell anemia, ALS and Alzheimer’s. Stem cell therapies that are currently in development provide a very real opportunity to cure these diseases.

Today, on the one-year anniversary of the government lifting the ban on federal funding for stem cell research, Children’s is launching a new Web site that will be filled with information that we hope will help the public better understand the science at the core of all of our efforts.

I am convinced that stem cell therapies will deliver better medicine at a lower cost to society and, based on their extraordinary achievements in the field, I am supporting the work of Drs. Zon and Daley because no team is better positioned to realize the tremendous potential of stem cell research.

by Dennis Rosen, MD – Associate Medical Director of Children’s Sleep Laboratory

A lot of research has been done about how not getting enough sleep affect someone’s ability to function. Whether this is shown in how someone performs on tests measuring cognitive abilities, behavior or even behind the wheel of a driving simulator (and responding worse than some whose blood alcohol levels exceed the legal limit), the results all support the premise that getting enough sleep is crucial if someone wants to achieve their full potential.

A new study has found that sleep deprivation interferes with people’s ability to distinguish between the facial expressions of others, specifically to determine whether they are happy or angry.

In this study, 20 people were deprived of sleep for 30 hours and then asked to look at photographs of faces, each displaying a different emotional state – happy, sad and angry – at various levels of intensity. Then they were allowed to sleep and retested 24 hours later. The responses from both days were compared, as well as to those of another group of 17 people who served as controls, undergoing the same testing two days in a row without sleep deprivation.

The researchers found that there was a significant weakening in the ability of those who had been tested while sleep deprived to distinguish between angry and happy facial expressions in the moderate intensity range. This difference disappeared after recovery sleep and was greater in women than in men.

What is the significance of these findings? First, they expose yet another area in which getting enough sleep is critical for normal daily function. They may also explain why overtired children become especially grumpy and moody and are just generally less pleasant to be around the more sleep deprived they are. Some of this may result from a decrease in the ability to accurately interpret messages and signals being given by family members, resulting in exaggerated or even inappropriate responses.

One question that arises which I find especially intriguing is what this may mean for children (and adults) with autism, who by definition have difficulties interpreting social cues. It is known that the prevalence of sleep disorders in children with autism is much higher than in the general population. So, one could ask whether the sleep disturbances seen are solely a consequence of the autism, or whether they not only coexist, but also play a role in strengthening some of autistic features. If that is the case, perhaps we should be more aggressive in treating sleep disorders in this population.

While the numbers in this study were small, it certainly raises many important questions, which will no doubt continue to be looked at going forward.

Read more of what Rosen has to say on children and their sleep on his blog, Sleeping Angels.

Here’s a quick look at what Thrive was up to last week.

Do you know how dangerous drowsy driving is for your teen? Teen brains really are different. Parents consider hastening death for terminally ill children. Do small changes in our diet really add up? Children’s Facebook page is named one of the best hospital pages. A Children’s critical care nurse tells her story about caring for Haitian earthquake victims on the USNS Comfort. Do you know how to recognize the early signs of autism? Learn why it’s important for young boys and girls to see female characters on screen. Children’s hearing needs to be protected beginning at a very young age.

Other stories we’ve been reading:

Read one father’s story on how he became an advocate for safer teen driving. Check out these safe driving tips for your teen. [Read about the dangers of drowsy driving.]

Advertising guilt doesn’t curb binge drinking. Teen alcohol and marijuana use is on the rise. [A recent teen drug survey predicted this.] Young people who smoke marijuana for long periods of time are more likely to risk psychosis.

Despite studies proving otherwise, some parents still believe that vaccines cause autism. Gene therapy is closer to restoring eyesight to blind patients. [Read about how a novel surgery saves one baby’s vision.] A blood test can help sort out milk allergies. [Watch Brett go through a milk exposure desensitization trial.]

Screening athletes could prevent sudden deaths. [Read a Children’s cardiologist’s views on screening athletes for heart disease.] Check out this list of the best Wii workout games. Educational videos don’t help babies learn. [Read about Disney giving refunds on Baby Einstein videos.]

A new study suggests that BPA may raise the risk of asthma in kids. [Read what every parent needs to know about BPA.] Household dirt won’t raise the asthma risk in infants. Childhood cancer survivors are at an increased risk of bladder tumors.

Kids are snacking about three times a day. [Take a look at these healthy snacking tips for kids.] Sleep habits determine fat gain in younger adults. [Does sleeping late keep your kids slim?] Obese kids are more prone to certain injuries.

Amazingly, bullying numbers are down. [How can you address bullying?] The House voted to protect students against abusive discipline. Mouth-to-mouth CPR is better for kids.

by Dafna Lemish, PhD

Actress Geena Davis’s recent speech to the United Nations highlighted a concern that researchers of children and media have been speaking about for many years. The programs on the screens our children view – on television, computers, movie theaters or even their mobile phones – portray a world of gross gender inequality: Girls still appear marginal to society.

Indeed, a recent study of children’s television in 24 countries, including the United States, found that there are two boys on average for every girl character. Furthermore, girls and boys continue to be represented in traditional, conservative and stereotypical ways: Girls appear largely as emotional and passive, hypersexual, and are overly concerned with consumption, beautification and romance. Boys are portrayed as aggressive, adventurous, rational, technologically-oriented, risk taking and “womanizing.” The more exciting stories and challenging adventures in the media still happen to boys rather than girls.

Most of the video, computer games and even television programs continue to be oriented towards boys’ tastes and interests. The media industry continues to operate under their working axiom: Although girls will watch boys’ shows, boys will not watch girls’ shows. Therefore, they would rather cater to boys.

In addition, commercial corporations continue to divide and drive boys and girls into two different media worlds by assigning different toys, clothing and games for each. Have you noticed recently how the aisles in the big toy stores are divided between the girls’ pink area and the boys’ metallic-grey-blue one?

While these are all well-documented facts, researchers are only now learning about the long term implications of this situation for our children’s well-being and healthy development. Some of the questions we are studying include:

• What kind of role models do these stereotypical images of boys and girls provide our children?
• What kind of aspirations do they foster?
• What do they tell children about whom they are and who they can strive to become?

What we do know from earlier studies is that when presented as marginal to the narrative, as a passive minority mainly concerned with appearance and attracting boys, girls learn that this is the way society values them. These studies demonstrate that girls learn from media images to experience themselves as inferior and to limit their ambitions for themselves and for their futures.

Boys, on the other hand, internalize the pressure to be “muscular,” “daring,” in control of their emotions and of others (people, animals and technology alike). While girls learn that their most important quality is their sexual appeal, boys learn that they are defined by their aggressiveness. These are not the kinds of lessons that promote a healthy sense of self or a humane environment for fostering mutual respect.

Furthermore, these gender-segregated childhoods provide different contexts for children’s social development. Such an environment does not necessarily prepare them for mutual understanding and collaboration. Nor does it foster common interests, friendships and recognition of such basic human commonalities as:

• Both girls and boys are children who share the same challenges, aspirations, morality, dreams and hopes
• Children of both genders need love and friendships, have adventures and overcome difficulties
• Both are curious and eager to explore their surroundings, and both struggle with their multiple identities
• Both sets of children are trying to carve their place in the world

The good news is that awareness to these issues is growing. There is an expanding body of knowledge about the images of gender in media and we are learning more and more about their implications

A lot of these efforts are available on Children’s Center on Media and Child Health’s website. Geena Davis has established an advocacy and research institute that focuses on gender equity in films and television. Many producers of quality television, internet sites and computer games are working towards changing these images and seek to create a more healthy media environment for children.

My own work in this area has documented many ways by which we can contribute to this process of change. But most importantly, the adult members of our families can make a difference in the everyday choices we make for our children’s media exposure –

• In the movies we take them to
• Computer games we encourage them to play
• Television programs we watch with them
• And comments we make about sexist images or aggressive boys

Aimee Lyons instructs a mother on how to care for her baby after he leaves the Intensive Care Unit on the Comfort.

by Aimee Lyons, RN, BSN, MSN

When I got the call from Project Hope to go to Haiti, I didn’t think twice. They called me on a Monday and the next day, Tuesday, I was on a plane, heading towards devastation unlike any I’d ever seen.

Although I have been a part of the Massachusetts National Disaster Team, I’d never actually been deployed to work in a disaster environment before. I only had my training and 20 plus years of critical care nursing experience to take with me.

I was deployed to work on the USNS Comfort, a Navy ship that travels around the world providing medical and surgical care to people in need. On the helicopter ride from Port-au-Prince to the ship, all of the earthquake’s wreckage became very clear. I flew over fires, crumbling houses, throngs of people on the streets and tent cities. I’d never witnessed anything like that before.

I was on the ship for three weeks and it felt like I was encapsulated in my own little world. The ship was like a small city that never slept. I’d never been on a ship for such a long period of time before where I could not leave.

I worked 18 straight shifts that were each 12 hours long and I mostly worked at night, 6 p.m. to 6 a.m. As a critical care nurse, I’ve seen a lot of trauma. But nothing I’ve done before can even come close to what I saw on that ship. I had to clean bricks and mortar out of children’s heads, eyes, mouths and body wounds. I assisted in amputations that would probably not have been necessary in the States.

Working in such a heightened emotional environment takes its toll. It was a hard environment to be in because everyday a few people died. When my patients died I knew it was sometimes because we didn’t have the medicine and technology on the ship that would’ve been available if they were in the States.

Whether here at Children’s or on the ship, the hardest part of my job is watching mothers struggle with the death of their children. However, on the Comfort we could only offer them the technology that was available. The moms would ask for more to be done, but nothing else was possible. When the moms would ask me what they were to do now that their child had died, I was at a loss for words. I had witnessed what the earthquake had done to their homes and their country. It was heartbreaking to me to have to tell them  that not only would they have to leave the boat, the only shelter they had for the time being, but they’d have to do it without their child. Some chose to carry their dead children off the ship to go home with them as a family.

The wonderful thing I learned about the Haitian culture is that they are so family oriented. I had a sense of this here in the States, but being immersed in the culture really brought the message home. It was amazing to see how the families cared for each other while on the boat. I loved this. I loved that in caring for the child I was also caring for the family.

Of course, it was hard not to become attached to some of the patients I treated on the ship. I treated a 30-week old preemie twin who was separated from his mother and twin. The day before I was to transport the twin off the ship, his twin and mother were found. I was able to transport the entire family to another hospital and en route the mother asked me to take her children back to the States with me. She already has six other children and wanted a better life for them. As tempting as her offer was (I already have four children of my own and if you know me, I would have gladly taken two more), the translator had to tell the mom that I didn’t want to go to jail for kidnapping. The mom laughed when she heard that.

Working on the USNS Comfort was an extremely humbling experience. When I came home I wondered if I’d made any difference at all. The devastation there is just so huge and widespread. I know that some of the kids who survived will be okay, but there are others I worry about – those that are sent back to the street to live. Was it worth it for them and all of the effort to keep them alive just to go back and live with no food, no water and no home?

I would go back to Haiti in a heartbeat, but my children would prefer that I stay at home. Coming home and having plenty of food to eat and water to drink made me realize exactly what it is that I have and what Haiti doesn’t. Haiti is one of the poorest countries in the world and they’re devastated now.

Thinking back to my time on the USNS Comfort, I realize how amazing it was that so many strangers could come together in a time of disaster and work for the bigger goal.

For parents already dealing with the sadness, anger and guilt of having a child with a terminal illness, watching that child experience pain in her last days is excruciating.

In a study led by Children’s Hospital Boston and Dana-Farber Cancer Institute’s Joanne Wolfe, MD, MPH, which was covered today in The Boston Globe and Time magazine, more than one out of eight parents who were surveyed considered hastening the death of a child with terminal cancer, with their child’s suffering increasing the likelihood of such thoughts. Five parents said they actually asked a caregiver to speed up their child’s death. “The fear of pain is the critical factor for parents with regard to hastening death,”said Wolfe in the Time article.

To help parents deal with the agonizing decisions they must make in situations like these–and to help the final days of a terminally ill child’s life be as pain-free and fulfilling as possible–Wolfe and Children’s created the Pediatric Advanced Care Team (PACT) in 1997. PACT staff manage patients’ pain and symptoms, address issues related to family dynamics, help open lines of communication and coordinate home care.

One essential part of the PACT program is Comfort Corners, which are home-like living spaces at Children’s for patients receiving end-of-life care and their families. The large, natural sunlight-infused spaces hold many family members, who can stay with the child 24-hours a day. Prior to PACT, 38 percent of patients died in an intensive care setting; since PACT’s founding, that number has dropped to 22 percent.

PACT results in more–and earlier–discussions about hospice care, eases suffering and improves communication. “There need to be opportunities for families to express their fears and for us to be able to indicate what is possible in terms of controlling pain and discomfort at the end of life,” said Wolfe in the Boston Globe article.

Listen to Wolfe talk to NPR about this study.

One of the hardest things to hear when you are pregnant is that there is something wrong with your baby.

When he finished the ultrasound, he said he’d back in a minute to talk about “some things.” I’ll never forget the way my heart dropped out of my chest at that moment.

For Meera Oliva, learning that her son, Elan, would be born with a cleft lip and palate was devastating.

I could barely speak. All that came out was crying. I tried to pull it together enough to just get out the words “cleft lip.”

On The New York Times’ Motherlode blog, Meera shares her story, from learning about cleft lip and palate to all the surgeries – performed by Children’s John Mulliken, MD – Elan, has had to “cure” his cleft lip.

by Dennis Rosen, MD – Associate Medical Director of Children’s Sleep Laboratory

Sleepiness is a major cause of motor vehicle accidents, and teenagers and young adults seem to be especially at risk. Teenage drivers are three times as likely to be involved in car accidents than middle age adult drivers and studies have shown that two-thirds of sleepiness-related crashes occur in teens and young adults.

In order to better understand the scope of the problem, high school juniors and seniors were surveyed by the researchers about their sleep and driving habits.

Over half of the students complained of excessive daytime sleepiness. This is not surprising, as they reported an average of 7.3 hours of sleep per night during the week, compared with 8.9 hours of sleep per night on weekends. This compares with what the students themselves felt they needed – which is slightly over nine hours per night – which has been shown in other studies as about the average sleep requirement of adolescents.

A little less than half of the students reported sleepiness while driving, yet only 19 percent reported actually doing something to combat the sleepiness, such as taking a break, while the rest simply continued to drive, hoping not to fall asleep behind the wheel.

Eight percent of the students reported being involved in near-miss crashes that they thought occurred because they were excessively sleepy. Of those involved in motor vehicle accidents, 15 percent attributed them to excessive sleepiness. Interestingly, “only” 11 of the crashes were blamed on alcohol. One can’t help wondering if the numbers would have been even higher if the researchers could have gone back and interviewed those who were involved in fatal crashes.

The findings of this study are very important for teenagers, their parents and anyone who finds themselves getting sleepy while driving. They demonstrate just how commonplace the problem is, as well as how infrequently its severity is recognized by drowsy drivers, putting themselves and others at terrible risk.

While everyone knows not to drink and drive, there is much less awareness about how dangerous drowsy driving is, and that it absolutely needs to be avoided. When I see teenagers with excessive daytime sleepiness in my clinic, I always bring up the subject of drowsy driving and caution that if they feel sleepy while driving, they need to either –

• pull off the road and take a break (a nap or a stretch)
• have a caffeinated drink
• give someone else the keys
• call someone to come get them

Unfortunately, because this is such a commonplace problem, the message that drowsy driving can kill needs to be spread by parents, teachers, physicians and public safety groups, in the same way that groups such as Mothers Against Drunk Driving have raised public awareness about the dangers of drunk driving.

Read more of what Rosen has to say on children and their sleep on his blog, Sleeping Angels.

Read Children’s youth advisers’ tips on healthy sleep habits.

Here’s a quick look at what Thrive was up to last week.

The presence of athletic doping in sports is explored. Read Maggie Hickey’s story about how her invisible epidemic was caused by a concussion. Learn all about psychiatric medication and children. Preemies’ pain threshold is lower than previously thought. Claims of vitamin-fortified, sugary foods are hard to swallow. Learn choking prevention tips for your children. Stem cell research opens the window on premature aging. There are DSM changes that can affect your family. What goes on in the brain during a 3-D movie? How having a family changes your views on the environment.

Other stories we’ve been reading:

This newborn care program promises to dramatically reduce the number of stillborn births. IVF babies are four times more likely to be stillborn.

Is diabetes to blame for birth defects? [Read Minnie’s story about living with Type 2 diabetes.] Taking antidepressants while pregnant can slow fetal development.

What you eat during pregnancy can impact your baby’s chance of having certain allergies. Can peanut allergies be cured? [Watch Brett’s journey to overcome his milk allergy.] The lactose intolerant population might be smaller than we think.

Poverty in childhood can shape neurobiology. [Read about how more children than ever are relying on food stamps.] Twenty percent of children don’t see a dentist annually. [Did you know that February is Children’s Dental Health Month?]

H1N1 hasn’t peaked yet. [Have your questions answered about whether or not your child should get the H1N1 shot.] A new vaccine has been approved for child infections. [Read about the new immunization schedule.]

Does obesity rehab for kids work? [Read about the First Lady’s obesity initiative.] Physically fit students do better academically. Playing the Wii could help stroke rehabilitation. [What are the effects of “exergames” like the Wii?]

By Aaron Bernstein, MD, MPH, physician in Medicine at Children’s and faculty, Center for Health and the Global Environment

For many parents, having kids changes everything (or almost everything). Sleep schedules, meal choices, work routines and more may get revamped with the birth of a child. The transformation, though, often goes still deeper.

More so than at any other point in life, new parents rethink their relationship with the environment and especially how it may affect the health of their child. Find a home with newly purchased water filters and air purifiers, hormone-free meat and milk, pesticide-free produce and whose inhabitants spend more time spent outdoors than most and you likely have found yourself the home of a family with young children.

The appearance of so many new things speaks to how potent a child’s presence can be to their parents’ views on the environment and well-being. That parents have been influential advocates for improvements in the quality of air, water and food in the United States over the past 50 years, then, comes as little surprise.

In the next 50 years as parents think about the environment and their children they will increasingly embrace another cause for the sake of their children’s health: climate change. Though most people know that climate change affects the weather, and some can identify fossil fuel combustion as the cause of upheaval in temperatures and precipitation patterns, few people identify climate change as a health concern, particularly for children. But it most assuredly is.

In a word, climate change means uncertainty. When it comes to Earth’s climate, we’re lucky to be living right now, because for the past 15,000 years, it has been uncharacteristically stable. Temperatures have stuck within a range befitting our well-being, allowing for, among other things, widespread agriculture and an ample fresh water. But climate change threatens to propel us out of that stable pattern.

A change in our climate can affect our welfare in a number of ways. It doesn’t take a statistics guru to recognize that raising the temperature of the planet by several degrees on average (which is our best guess as to where we’re headed by 2100 unless we make some drastic changes to how we get our energy) makes heat waves more likely and more severe. A brutal week-long heat wave baked Europe in 2003. Temperatures in Paris hit 104 degrees Fahrenheit for seven days; tens of thousands of people lost their lives. Although no individual weather event can be pegged as a singular consequence of climate change, the best available science indicates that greenhouse gas warming that has occurred to date doubled the odds that such a severe heat wave might occur.

Too much heat in and of itself isn’t healthy, but heat also factors into other health problems. With the right mix of tailpipe emissions, heat catalyzes the production of ozone – one of smog’s dirtiest players – that can trigger asthma flares and, as emerging evidence suggests, may promote the development of asthma.

Heat also melts ice, and since more than half the water supply in Western states comes from snow, more heat is not good news. With warmer temperatures, the snow melts and doesn’t come back, thereby worsening water scarcity and quality in the West.

The changing climate also affects food. Heat harms livestock just as it may harm us. In 2006, a weeklong summer heat wave in California lead to the deaths of more than 25,000 cattle and 700,000 fowl.

Crops too may have trouble with high temperatures. Where an insect can survive and how often it can reproduce depends directly on how warm it is. Warming opens the door to pests and pathogens on staple crops like corn and soybeans that were previously frozen out of contention. Warming doesn’t discriminate among insects, either. Bugs that transmit diseases to humans have also been on the move to adapt to temperature shifts and this may affect a number of infections, including Lyme disease here in New England, West Nile Virus and others.

So what can a parent to do? A lot, actually.

• According to the most recent census data, parents are among the 20 percent of Americans who carpool, take public transit or bike to work.
• They have taken an increasing interest in farmer’s markets, which have tripled in number in the past 15 years, and they are eating more locally grown fruits and vegetables.
• They reuse things more often and recycle what’s left over: the percent of municipal solid waste diverted from landfills has doubled since 1990. Tellingly (if somewhat sadly) more Americans recycle than typically vote in a presidential election.
• They replace incandescent bulbs with compact fluorescent bulbs (CFL) so that nearly 30 percent of all lighting now uses CFLs (in 2006 this figure was less than 10 percent).

To get a sense of how important each of these actions is to reducing greenhouse gas emissions, consider that:

• about 15 percent of America’s greenhouse gas emissions come from local transportation
• roughly 12 percent of emissions stem from transportation of food (note that if you drive a gas guzzler to a farmer’s market the carbon savings are likely lost)
• almost 10 percent of an average home’s energy use goes into lighting and that CFLs use a quarter of the energy that incandescents do. (For those concerned about the small amounts of mercury in CFLs, consider that most of your mercury exposure comes from the burning of coal for electricity).

Note that none of these actions were initiated to reduce greenhouse gas emissions. Surveys show that people carpool and install CFLs to save money; eat local produce because it tastes better and they like knowing where their food comes from; recycle because, well, that’s what Americans do. And that may be the most important point of all.

If we are to tackle climate change, the path to success is one of habit and routine. While some may do what’s necessary because they believe it will make the world healthier for their children, or because they’d rather avoid uncertainty, or simply because it’s the right thing to do, many will not.

To lay a path that keeps us in the climate groove, parents need to let policymakers know that dealing with climate change matters, especially for their and their children’s health. Only with good policies will the choices that reduce our carbon footprints be the ones that are easier on our wallets and our minds. But most important of all to our success may be the value of your example to your child, and how you lead your life in regard to the planet you live on and that they will grow-up in, especially at that moment you think anew about the environment because of your child.

This New York Times article offers another pediatrician’s advice on ‘Green’ Parenting.

Read this Q&A with Bernstein on the Green Nursery blog.

Media expert Michael Rich, MD, MPH, director of the Center on Media and Child Health at Children’s Hospital Boston, answers your questions about media use. Last week, he discussed if parents are legally responsible when their teens engage in sexting.

Here’s this week’s question:

Q: I took my sons to see Avatar over vacation, and while I sat there with giant 3D glasses on, I wondered if scientists know anything about whether 3D affects how children process the experience of a movie?
Thrilled by 3D in Wilmington, MA

A: Dear Thrilled by 3D,

This question gets at the heart of what’s interesting and exciting about three-dimensional (3D) movies. They absolutely affect your children’s experience of movie, much as they affect yours. Why? Because the more heavily the brain is involved with sensory motor processing, the less energy it has for other tasks.

To understand why that’s true, look at something a certain distance from yourself with just one eye, and then the other; it will appear to move. That’s because you are constantly synthesizing the two different two-dimensional (2D) images from your two eyes into a single 3D image. The way a 3D movie works is that two separate 2D images are projected onscreen at the same time.  The glasses you wear block out one image or the other so that each eye sees only what was designed for it to see, which helps your brain combine them into one 3D image.

So what does your brain do when you’re sitting in a theatre, looking at a giant screen, wearing 3D glasses, swimming in surround sound, and processing the 24 images that flip by per second?  Your brain dutifully processes those stimuli—and does little else. In fact, your pre-frontal cortex, which is involved in impulse control, future thinking, and moral choices, is basically inactivated in this process. That’s part of why you “get lost” in the movie.

These facts can make for an immersive movie experience, which can be quite enjoyable—and also quite overwhelming. For children, the extra processing that their brains have to do may make them more vulnerable to the content. In other words, if something in the movie would have scared them in 2D, it will likely be even scarier in 3D. But children’s fear is an issue to consider with any movie, so read up on the movie’s content before you go, whether it’s 2D or 3D.

Something else worth mentioning is that many people experience nausea during a 3D movie. That’s because the signals that your brain is receiving from your eyes say that you are moving in relation to your immediate surroundings, but your inner ear (in charge of balance) is saying that you’re not moving. If the nausea is not so bad that you’d avoid 3D movies all together, one way to reduce these feelings during a 3D movie is to close your eyes or look away from the screen.  This will remove the competing stimuli and help reorient you in actual space.

Enjoy your media and use them wisely,
The Mediatrician®

Do you have a question about your child’s media use? Ask it today!

by Stuart Goldman, MD, Co-Director of Children’s Mood Disorder Program

The American Psychiatric Association’s Diagnostic and Statistical Manual of Mental Disorders (DSM) is in the draft stages of revising their fifth edition. While the DSM has limitations and at times is a bit controversial in the psychiatry community, it is the official diagnostic guide. The new edition which is scheduled for 2013 has a few suggested changes that could have some impact on your child and family.

1. Asperger’s syndrome will lose its own classification and be merged with Autism.

Differentiating between these two disorders has long been difficult, and the data increasingly concludes that Asperger’s and autism are dimensions of the same illness. There are pros and cons to this merging.

The con is that those diagnosed with Asperger’s might feel more stigmatized by an autism diagnosis (which is generally seen as far more severe). People with Asperger’s feel like they may be quirky and different, but they have their own successes in the world. Many patients with “classic autism” are quite limited and those with Asperger’s may feel like they’re being brought down by an autism diagnosis.

The pro is that the autism diagnosis can give people, particularly very young children, access to a greater range of services. So it may help those on the more autistic side of the spectrum get early intervention and fare much better in life.

2. Instead of diagnosing far too many children with bipolar disorder, a new diagnosis of temper dysregulation with dysphoria will be used to curb the use of the pediatric bipolar label.

Accurately diagnosing pediatric bipolar disorder has been very challenging. None of the prior (or expected) DSM manuals have adjusted the diagnosis for children. In the mid-to-late 90’s, some psychiatrists unofficially broadened the diagnosis to include children with severe temper tantrums and mood problems.

Further study revealed that while there are groups of children with markedly disregulated moods and challenging behaviors they don’t fit the traditional diagnosis of bipolar disorder. In fact, these kids grow up to have problems with depression, substance abuse and behavioral problems, not bipolar disorders. Hence the new diagnosis that captures the two key characteristic problems, angry outbursts and unpleasant mood.

For families it will mean revisiting the treatment that their children are getting and may cause confusion for some. Ultimately being taken out of one of the more poor prognosis categories will be a hope for relief.

3. Cutting will be classified as a mental disorder instead of as a symptom of borderline personality disorder.

People cut themselves for a variety of reasons, but the majority of them don’t have borderline personality disorder. For many young people, cutting has become a culturally acceptable way of dealing with stress. This new classification means that clinicians and families will have to determine if it’s symptomatic of real trouble or just a challenging phase. Moving cutting away from being a symptom of a character disorder (borderline) and into a more defined syndrome will do a great service for some patients.

4. Binge eating is being added as an eating disorder.

While for some, binge eating should not be labeled a disorder, there are those who binge eat to the extent that it causes dysfunction in their lives. Now that it can be diagnosed as a separate disorder from bulimia nervosa, treatment may become more readily available.

Walking down the cereal aisle at the supermarket, it’s impossible to miss the declarations of health benefits prominently located on the fronts of the colorful boxes. The Nutrition Facts Panel—a valuable consumer resource that lists a product’s sugar, salt, fat and calorie content—is usually printed on the side of the box. But do parents searching for a healthful choice even bother to read the nutritional information when the front of the box suggests the product is made of “whole grain goodness” and “immune-boosting” vitamins?

Unfortunately many don’t and that’s a real problem, says David Ludwig, MD, PhD, in a commentary co-authored with Marion Nestle, PhD, MPH, and published in the Journal of the American Medical Association (JAMA). “We’ve arrived at the deplorable situation of Cocoa Krispies being marketed as a way to protect children from H1N1 flu, because it has a few added vitamins,” says Ludwig.

Consumers tend to believe claims on the front of packages, according to recent research, and perceive health statements to be endorsed by the government. But few health claims on food products have any basis in science at all. And unlike medications, food product labels don’t have to disclose their potential ill effects, such as obesity from high added sugar content.

Since the early 1900s, when the FDA prohibited food labels from bearing statements that were “false or misleading in any particular,” food manufactures and the federal government have been at odds over using unsubstantiated health claims in marketing. Now, the FDA is intending to examine the entire issue of front of package labeling, with the goal of making the systems used “…nutritionally sound, well-designed to help consumers make informed and healthy food choices.”

But Ludwig and Nestle think it’s logistically unfeasible to come up with system to validate health claims, and are advocating an all-out ban on front of package health claims. Read the excerpt of the commentary in JAMA and let us know what you think. Should misleading health claims be allowed? Is there any middle ground?