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:

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.

Ray Tye with Children's patient, Omar

Ray Tye, a successful businessman turned noted children’s philanthropist, died yesterday morning at the age of 87. Tye was devoted to helping children in medical need.

Tye helped numerous patients receive care at Children’s Hospital Boston, many coming from all over the world. Fernanda Medeiros, manager of the International Center at Children’s, worked side-by-side with Tye to help children from foreign countries receive life-saving treatments. “The world has lost a great, great man,” Medeiros tells The Boston Herald.

One of the many patients whose care he helped pay for is Omar, who was badly injured while traveling to Baghdad. He needed extensive reconstructive surgery and the Ray Tye Medical Foundation donated $100,000 to help cover medical expenses. Tye also lobbied on behalf of Omar and his family to receive political asylum in the United States, which they were recently granted.

Dumanel Luxama, a boy from Haiti with a rare congenital facial malformation, was another child Tye helped. You can read Dumanel’s story and watch a video about him here.

Tye’s generous spirit will be remembered by many, especially those of us here at Children’s. Our thoughts and prayers go out to him and his family.

Thrive would like to congratulate Children’s Hospital Boston’s Facebook fan page for reaching more than 100,000 fans. That’s almost enough people to fill up Fenway Park three times!

To celebrate, we’d like to share some of the most popular posts on Children’s Facebook fan page with you.

• Valentine’s Day: This post received more interactions than other any post in Children’s Facebook history.
• Cardiac Grant: Most liked post.
• Thrive stories: You’re an Ava-what? and Call of Duty were the most popular Thrive stories Children’s Facebook fan page linked to.
• Fan favorites: Dr. Judith Palfrey Carries the Olympic Torch and Haiti: Children’s Response to a Country in Need were loved by Children’s Facebook fans.
• Celebrity Visits: Bruins, Celtics and Boys Like Girls

If you’re not one already, become a Children’s Facebook fan today!

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.

The Tafts have turned Erica's gluten-free diet into a family affair.

by Tara Taft

Although my husband called her “Smiley,” our happy baby, Erica, was clingy and cranky. For two months, we cleaned up after our 22-month-old as she vomited every day and watched in growing alarm as her tummy grew more and more distended, while her arm and leg muscles atrophied. Her pediatrician thought she had a virus, but she wasn’t getting any better. After four weeks, he referred us to Children’s Hospital Boston, where her gastrointestinal doctor suspected celiac disease.

A blood test and endoscopy confirmed it, and the diagnosis brought relief. The disease was causing Erica’s immune system to damage the villi in her small intestine, resulting in her body’s inability to absorb nutrients. The prescription was simple: All we had to do was eliminate gluten, a protein found in wheat, rye and barley, from her diet. But my husband, Sandy, and I were overwhelmed and at a loss. What could Erica eat? What would we eat? Giving up rye and barley would be easy, but not wheat. Our family ate a lot of pasta and pizza, crackers and pretzels. I thought Erica would never have an easy-bake oven, go out for pizza or bake chocolate chip cookies.

I threw away every food with wheat: flour, crackers, bread, cookies, soy sauce. I began giving away my favorite baking cookbooks and scrubbed every pan. I bought a new toaster and forbade my husband from putting wheat toast in it. The gluten-free tapioca bread I bought at the health food store tasted like cardboard, the specialty crackers crumbled and the wheatless cookies had an after-taste. Keeping gluten-tainted crumbs away from the gluten-free food was stressful, so for the first few months, the whole family ate gluten-free. It wasn’t easy, but it worked: As we rid wheat from her diet, Erica’s demeanor began to change and she was happier. Once again, she deserved the nickname Smiley.

Our lives had changed. We ate out less frequently and found it difficult to be spontaneous. We had to be assertive at restaurants, holiday gatherings, birthday parties and, later on, at schools. Not everyone was understanding and helpful. But then our lives changed again. Our nutritionist at Children’s introduced us to the hospital’s Celiac Support Group. Here, the parent of another patient said, “I’m sorry,” when I told her my daughter had been diagnosed. I realized she was recognizing my grief and my loss. A few months later, I sat at a support group meeting listening to a social worker describe the five stages of loss and explaining how people with celiac disease experience those stages. It was comforting to know that my feelings were not unusual. In fact, they were expected, especially the first year on the diet.

The group offered education, resources, tips, discussions about research, recipes and, best of all, friends for me and for my daughter who completely understand what it’s like to live gluten-free. I learned where to buy gluten-free products and which restaurants had gluten-free menus. I was introduced to list-servs and Web sites and was able to sample and buy gluten-free products at meetings. I discovered a whole new way of baking through their recipes and cooking demonstrations.

While these meetings continue to inform me, it’s the people who make the group so worthwhile. Erica and her gluten-free friends decorate cookies and dance at the annual holiday parties, swim and scramble for piñata candy at the summer picnic, and play games or participate in a scavenger hunt with other kids at the fall and spring meetings. At these functions, Erica knows that she can eat everything. They are the only events where she doesn’t feel different or left out.

I have made friends as well. Zelia gave me the name of her favorite cake mix; Susan gave me her favorite pumpkin muffin recipe; Mary listened to my concerns; Sue gave me a cupcake holder; Maria recommended a cookbook. As I became more comfortable with the diet and the disease, I began sharing what I’ve learned with newly diagnosed families. I hosted a gluten-free holiday cookie swap and made gluten-free ice cream sandwiches for a few of the kids we’d met. After six years of mostly taking, I decided it was my turn to give, so I joined the board.

I’m now co-chair of Children’s Celiac Support Group, and while I enjoy editing the newsletter and making sure the events run smoothly, I find connecting people and helping them discover that they’re not alone to be the most rewarding. When the moderator of our expert panel at our members’ forum asked how many people in the audience were new members, 75 percent raised their hands. I knew then that everything we’d done to make that meeting happen was worth it.

When Erica was diagnosed, my family entered a whole new world we didn’t know existed. People have helped us, and we’ve helped others. My son, Tommy (12), and Erica (now 10) look forward to arriving early at group events and helping to set up. Erica has written for the newsletter, Tommy has helped with childcare and Sandy has acted as moderator. With so much information available now over the Internet, I’m sure there are some people who don’t feel it’s necessary to join a support group, yet being part of one has had a tremendously positive impact on our lives. My daughter has learned to overcome adversity, and both my son and daughter have learned the rewards of helping people. Although living gluten-free can still have its challenges, being part of a support group has made all the difference.

A new study shows that gluten free camps are extremely helpful for kids with celiac disease.

For more information on celiac disease, watch these helpful videos.

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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.

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

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.

If your adolescent child has been exposed to secondhand smoke, he may already have heart disease. That’s the message of a new study published this month.

Researchers in Finland followed around 500 children from age 8 to 13. Every year they did a blood test that measured their exposure to tobacco smoke in the previous few days. At age 13, they looked at the arteries of the children using ultrasound, to measure their thickness and health, and measured their levels of Apolipoprotein B, which gives a direct measure of the lipoproteins that can cause heart disease. They found that healthy 13-year-olds with exposure to tobacco smoke between 8 and 13 had thickening of the major arteries and higher levels of Apolipoprotein B. While the effects were worse in the kids with the highest exposure to tobacco smoke, they were present in kids with even modest exposure.

This is scary stuff—especially when you add it to what we already know about the dangers of secondhand smoke:
•    According to the American Cancer Society, each year it cases 46,000 deaths in non-smokers who live with smokers, and 3,400 lung cancers in non-smoking adults
•    Every year, it causes between 150,000 and 300,000 lung infections in children less than 18 months old, leading to between 7,500 and 15,000 hospitalizations
•    Children with asthma who are exposed to cigarette smoke have more frequent and severe asthma attacks
•    Children living with smokers can have slower lung growth
•    Secondhand smoke is responsible for more than 750,000 middle ear infections in children every year
•    Exposure to cigarette smoke increases the risk that a baby will die of Sudden Infant Death Syndrome (SIDS)
•    Exposure during pregnancy (just exposure—the woman doesn’t have to smoke herself) can lead to low-birthweight babies
•    While exposure to the actual smoke is the most dangerous, more research is suggesting that the particles that get into things like hair, clothing and furniture (those particles that make people smell like cigarette smoke) are toxic as well—so smoking away from people may not be enough

It’s no surprise, then, that a 2006 Surgeon General’s report said that there is no safe level of exposure to secondhand smoke. But despite this, exposure is still happening—in the workplace, in public places, in far too many homes and in cars (for those who think that rolling down the windows makes smoking in the car okay, a study from New Zealand showed that even with the windows down, the exposure was the same as in a smoky bar!)

It’s time for zero tolerance. Here’s how we can start:
•    If you smoke, quit.  You don’t really want to hurt the people around you, do you? I know that it’s not that easy—but there are treatments that can help. Talk to your doctor.
•    Boycott the houses of people who smoke.  I know this sounds rude, but what’s more important: being polite, or the future health of your family? And who knows, when Grandma or Uncle George realizes that you are serious about not visiting with the kids, it might just be the impetus they need to quit.
•    To the extent that it is possible, don’t let your children be around cigarette smoke. Before you say yes to a playdate, ask if there’s anyone who smokes—if there is, have it at your house instead. Don’t go to restaurants that have a smoking section. Avoid public smoking areas.
•    Support smoke-free policies in the workplace and your community. The goal should be for all workplaces to be smoke-free. Nobody should be forced to take a health risk in order to make a living!
•    Talk to your kids about smoking. According to a 2007 CDC survey, 20% of high school students smoke. That’s better than 23% in 2005, but still too high. Make sure your kids get the message loud and clear from you that smoking is a really bad idea (if you smoke yourself, it’s going to be hard to get that message across!)

Working together, we can make a difference—and we have to.  The lives of our children are at stake.

Whether it’s Chocolate Cheerios advertising that it “may reduce the risk of heart disease”, Juicy Juice claiming it aids “brain development” or Nestle’s Drumsticks showcasing it has “0g Trans Fat” but leaving out that eating them may actually help make you fat – the Food and Drug Administration (FDA) is fed up with false and misleading claims on food labels.

The FDA has sent out a group of letters warning companies about their misleading advertising practices. The commissioner of food and drugs, Margaret Hamburg, M.D., stated on the FDA’s website, “Today, ready access to reliable information about the calorie and nutrient content of food is even more important, given the prevalence of obesity and diet-related diseases in the United States.”

The FDA sent out 17 letters in total addressing the questionable labeling on 22 food products. You can view a list of all of these products on the FDA’s website.