Helping Hands in Haiti

haiti 1Dr. Brendan Campbell, Medical Director of Pediatric Trauma at Connecticut Children’s reflects on his weeklong visit to Haiti; where he, retired pediatric surgeon, Dr. Donald Hight and pediatric anesthesiologist, Richard Kuntz, provided surgical care to patients of all ages at the Hopital Sacre Coeur in Milot.

We learned a lot over the 7 days we spent in Milot, and hopefully managed to have a positive impact on a few Haitian children.

The fact that at least two of the patients we operated on last year had died over the last 12 months gives you a sense for what living in abject poverty does to your health status.

haiti 2In 5 days we performed about 20 operations (thank you Rich Kuntz!), and are getting better at selecting the most appropriate cases to do (i.e., those that are beyond the expertise of the Haitian general surgeons, and do not require resource intensive post-op care). We saw many unusual medical cases including cutaneous anthrax, strongyloides, and diphtheria. I won’t bore you with the details of these, or depress you with the details of the many children we saw dying from malnutrition.

It’s always a pleasure to operate with Dr. Hight. His interest and enthusiasm for learning in the twilight of his surgical career makes me think that he chose his life’s work wisely. (I think) His and my approach to handling fundamental surgical problems is similar, and we both have the necessary patience and adaptability to navigate the many challenges that arise in austere surgical environments…

haiti 3Quality improvement is a different animal in a hospital powered by 3 diesel generators that operates mostly on donated supplies and equipment. You have to pare down your expectations, recognize the substantial diagnostic and clinical limitations, focus on the most beneficial and cost-effective interventions, and realize the critical importance of exercising surgical restraint.

And though the luggage (including medical supplies) for two-thirds of our team never arrived, our team somehow still managed to cobble together enough toys and treats to have a Christmas party for the children at the hospital. This event takes on special meaning in a country where Christmas Day is really no different than any other day.

Season’s Greetings

From watching the news lately, it seems that  between the weather report and the end of the broadcast we will typically see one of those stories that makes you smile, laugh or feel comforted by the goodness of humanity.

The morning and evening news stories are usually a little different during the holiday season, however, and with good reason.  We often see more stories about people being helped during a crisis, meals being served at a soup kitchen, or my particular favorite – toys that are collected for our patients here at Connecticut Children’s.

 

My name is Jim Shmerling and I’m the new President and Chief Executive Officer at Connecticut Children’s.  One thing you should know about me is I feel it’s extremely important to stay connected with you in as many ways possible. One way to do that is through storytelling.

Stories like the one mentioned above are of particular interest to me because they help pull back the curtain on the wonderful work being done every day at Connecticut Children’s and by many other organizations in this community.  It’s so important to shed light on all the good that’s being done not just during the holidays but all year long.

In fact, the generosity of this community is one of the first things I noted when I moved here from Denver less than 2 months ago.  I’ve worked in pediatric healthcare for over 35 years.  Much like the weather here in Connecticut, it can be unpredictable and ever changing. It’s easy to get caught up in the details, but one walk through the halls of our Medical Center quickly puts things in perspective for me. It also helps me focus my attention on our vision – to make the children of Connecticut the healthiest in the nation.

So during this holiday season, I want to take this opportunity to not only introduce myself but to thank our employees, as well as the businesses and organizations who are not taking a holiday from the holidays, but who will be busier than ever meeting needs, doing good, solving problems and making kids better.

Every single one of these stories deserves a nod on the news.  We appreciate the work you do and the difference you make in our community and in our patient’s lives.

Finally, as we prepare to ring in 2016, I can say that I’m quite excited to spend my first New Year’s in New England.  I look forward to experiencing new places and meeting new people, but I’m most looking forward to the new growth and new opportunities in store for Connecticut Children’s.  That said, I make you this promise:  We will continue to provide you and all the children who enter our doors with the care they deserve in the most efficient, safest and friendliest way possible. We are your neighbor, but most importantly we are always here when you need us.

Warm Regards-

Jim

Hope for the Holidays: Joey’s Story

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We were holding our breaths with Joseph from his 2nd day of life. He started turning yellow and was very, very sleepy. The day after we were discharged from the hospital, he was directly admitted to the NICU for hyperbilirubinemia, which is severe jaundice. After 4 long days, he was discharged. After a few weeks, the jaundice cleared, and we thought we were in the clear. Just a quick follow up at 3 months old to make sure everything still looked great.

The doctor walked into the exam room with Joe’s lab results and she said “Well, his bilirubin is totally resolved, that’s not an issue at all. But he is neutropenic. Do you know what that is? Has he been sick recently?” Then all I heard was “it’s probably not cancer, but we need to make sure.”

Neutropenia is, by definition, “an abnormally low count of neutrophils, a type of white blood cell that helps fight off infections, particularly those caused by bacteria and fungi.”

We started picking up information very quickly. Any fever of 100.4 or greater and Joe needed IV antibiotics within an hour. If he didn’t get them, and obtained a bacterial infection, he would get sepsis and die. Quickly. We switched his care to Connecticut Children’s Medical Center after meeting with Dr. Parikh for a second opinion, and he confirmed everything we already knew. He also confirmed the type of neutropenia Joe had, autoimmune, and reaffirmed to us that it is usually outgrown in a few years.

You never forget the first fever. He was 5 months old, and it was the middle of the night. 3 days before Christmas. Why are they always the middle of the night? We live an hour from the hospital. Parents of chronically ill children know how much this can affect a marriage. As much as you love each other, those rushed trips to the hospital make things so stressful. Every hospital stay was a minimum of 48 hours. 48 hours. 48 hours. 48 long hours. 48 hours is only two days. But two days in a hospital with an infant can seem like a lifetime. The shifts change, but everything is the same. Pokes, middle of the night vitals, residents, vending machines. You have to call out of work, find somebody to watch your dog, get your mail. You inevitably leave your comb at home, or extra hair ties, and when you’ve waited a really long time to take a shower, a missing comb seems like a really big thing.

Joseph May_1

After the first stay, we went home, and isolated ourselves. No grocery trips, no visits to see Santa, no family reunions, no holidays, nothing that could put his health in jeopardy. But babies still get fevers.

The second hospital stay, we found out he was severely allergic to a particular antibiotic. I thought he was going to die as he turned purple, started vomiting, and struggled to breathe. The third hospital stay, we missed a concert my husband had bought us tickets for. The fourth hospital stay was Easter. The fifth was his first birthday. At that point, we decided to start him on a life changing drug called Neupogen. We administered shots to him at home once or twice a week. Neupogen is a bone marrow stimulating drug so it boosted his neutrophil production. Side effects? Bone pain. He would cry every night after we gave him the shots. All we could do was rock him and wait for it to pass. That was July 2013. The hospital trips decreased greatly after that. We expanded our safety net-storytime and gymnastics once a week. He still got sick, but the Neupogen helped him fight. I was breastfeeding and was constantly told that was the best thing for him-breastmilk provided immunities he may not have had otherwise.

Joe had a bone marrow biopsy shortly after starting the Neupogen and everything looked normal-still no cancer. Just neutropenia. God bless anesthesiologists-I can’t imagine putting children “under” day in and day out and having to deal with parents like me.

When our second son was born May 2015, we were able to bank his cord blood and tissue for free, thanks to ViaCord’s Sibling Connection program in the event Joe could ever benefit from a transplant.

Then came August 2015. At a regular quarterly appointment, we realized Joe had neutrophils. A lot of them. Dr. Parikh had us hold off on the next neupogen dose, and we saw Joe’s numbers stay up. We started holding our breaths again, now full of hope instead of fear for the first time since he was born. August to November. 3 months and over 10 lab draws.

Joseph May_3

Monday, November 23rd, Dr. Parikh formally discharged Joseph from the care of hematology. As quickly as it had begun, it was over. I have learned so much from this 29 month old of mine, and from his journey. Be nice to nurses. It’s okay to cry. Trust your doctors. Trust your gut. Let people help you. Don’t be afraid to ask questions. Never, ever, ever give up hope. If you don’t have hope, you don’t have anything at all.

Love,

Emily May, Joseph’s mom

PS-If you’re reading this, I urge you to consider registering to become a bone marrow donor with BeTheMatch. We are the lucky ones. Many other children and adults need your help.

Hope Changes Everything

By Brian Duffin, Emma’s Dad

Doctors and medical researchers use terms like “breakthroughs” and “advances” to discuss their work in treating patients and looking for new drugs and treatments. The work that these medical professionals do is essential to the health and well-being of those who require curative care and treatment in a hospital setting. In a facility like Connecticut Children’s Medical Center, there are other important considerations to keep in mind, like the overall well-being of the children receiving care.

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When my daughter, Emma, was receiving treatment for Leukemia at Connecticut Children’s, my wife and I quickly learned that some of the most important “breakthroughs” and “advances” were sometimes measured by giggles and smiles. One of the most important facets of treatment for children–and their parents, btw–doesn’t come in an IV or a pill; it’s a four-letter word dispensed liberally by the team at Connecticut Children’s: HOPE!

Hope comes in the form of an art kit, a board game, a new toy, or the smile of a nurse, doctor, or other staff member. Hope was one of the watchwords for my wife and me while our daughter received chemotherapy on the 8th floor of the Medical Center. Our family motto was then and remains today: Hope changes everything.

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Emma turned eight during her third and final round of chemotherapy prior to receiving a life-saving bone-marrow transplant from her brother. While a hospital is probably not the place that any child would choose to celebrate a birthday, the child-life specialists at Connecticut Children’s worked to make it an extraordinary and special birthday for Emma. You should have seen the look of wonderment in her eyes as she unwrapped a shiny new Nintendo 3DS. Emma’s gift came by way of the generosity of others. That gift had far more value to my daughter than its monetary worth. Emma’s gift was priceless; her smile was memorable; the hope was lasting.

Thanks to the generosity of so many, not only during the holiday season but throughout the year, many more children just like my daughter will have hope for the holidays. As these children and their families seek for some measure of normalcy in their new normal of hospital life, these gifts will bring smiles and perhaps, even for a small moment, they won’t be a patient in the hospital, but a child with a new toy for Christmas.

FACING THE FACTS: THE FLU VACCINE

By Dr. Nicholas Bennett, Medical Director, Connecticut Children’s Division of Infectious Diseases & Immunology

Bennett_Flu Photo

It’s that time of year again – influenza season. And that means it’s time for the annual flu vaccine. Flu is perhaps unique in that it has such a rapid mutation rate that it requires new shots every year to try to keep up with the strains, and every year we hope that the selection made in February matches the viruses that will be circulating in the following winter…

The most common myth about the flu shot is that it can give you the flu – it can’t. The shot is a killed vaccine, it’s not even a whole virus. You might catch a cold at about the same time or you might simply be feeling the vaccine work…but it’s not the flu. I’ve had the flu. I’ve had the flu shot. They’re nothing like each other. The vaccine allows your body to produce antibodies (special immune proteins) that will inactivate the virus without actually getting the real infection.

The second myth is regarding its effectiveness – or rather, it’s not a myth but more negative impressions. Some years the vaccine isn’t great – at best it might be 60-70% effective at reducing symptoms of influenza, and in recent times it has gone as low as 30% when a strain showed up that wasn’t even in the vaccine. The argument goes “if it’s only 50-percent effective, why bother?” Well that’s a lot like saying “seat belts only reduce the risk of serious injury in a crash by 50% -so why bother?” The simple fact is, regardless of effectiveness, if you don’t get immunized you have 0% protection! And that’s a real statistic about seat belts by the way – the flu shot is typically more effective than seat belts. Whodathunkit?

All children aged 6 months and above should be immunized to protect themselves – children with immune deficiencies or existing respiratory diseases are at even higher risk for developing complications from influenza. The most common option is the killed vaccine (the shot) but for many kids the live nasal spray is a nice pain-free alternative. The nasal vaccine isn’t recommended for children with asthma unfortunately – in the same way as a common cold can trigger a wheezing episode, so can the live flu vaccine – they should get the shot, as well as everyone around them to protect them!

And it’s for this reason that everyone at Connecticut Children’s Medical Center gets a flu shot. Everyone. Every year. Even staff who aren’t actually taking care of patients. We have made a commitment to protect ourselves, our colleagues and our patients as best we can. You should expect nothing less from the people who take care of your children.

Get your PJs on… Make a difference!

By Nicholas Wesoloskie

On December 11th people across Connecticut will stand together in support of the kids at Connecticut Children’s Medical Center who wear PJs for days weeks or longer while fighting cancer and other serious illnesses. I hope one day to see everyone across the state, come together on this day to help these patients.

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In 2011, as a 2nd grader, I started PJ Day for the Kids to help other brave kids like my sister. When Charlotte was just 3 weeks, old she was diagnosed with cancer. She fought courageously for her entire first year of life. We are so thankful for the amazing doctors and nurses that helped her get healthy. She is in 3rd grade now and over 7 years cancer free! We want to help other kids and families as they go through similar experiences.

Once a year, kids wear their PJs to school in honor of the kids at Connecticut Children’s. They are asked to bring a donation of $1 or more, or a toy for the treasure chests at the hospital.

PJ Day for the Kids has really taken off this year getting support from 19 schools, 42 Dunkin Donuts stores, 5 Highland Park Market’s, 9 Domino’s Pizza’s and many more small businesses. The staff at all Connecticut Children’s locations are joining in too this year! It is clear how strongly everyone feels about helping these kids.

Many have a story to share like Chery Trudon, of ERA Blanchard and Rossetto. Her daughter had cancer at the same time as my sister. Chery has been PJ Day’s largest supporter, donating $100 from each house she sold this year, totaling over $2500 as of August!

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Other friends from the hospital have started PJ Day events in their towns, like Farmington, Wethersfield, Rocky Hill, West Hartford and Tolland. It seems like new schools join every day!

It’s not too late for a school or business to join in. Help spread the message about the miracles that happen at Connecticut Children’s and help raise funds and spirits. All donations benefit the Division of Hematology and Oncology at Connecticut Children’s. You can donate today or learn more at http://pjday.kintera.org.

Our dream of having the whole state standing together in support of the kids is closer to reality!