So much more than a toy…

By Rachel K., a grateful mom

15873173_709235219258211_5247297050631256053_nIf you have ever wondered what happens to all of the generous donations made to your local children’s hospital, this is a great example.

My daughter is 10 years old, born with multiple disabilities and autism. We spend a lot of time getting care from over 20 different medical specialists at Connecticut Children’s Medical Center. She usually gets to pick out a sticker (sometimes two if she worked hard) after all appointments at the hospital.

Some days the promise of a sticker is the only way she can hold her stuff together. On days like today, when an early morning, 20-minute routine hearing test turned into an additional 40 minutes, to include injecting molding putty into her ears after being told she now needed hearing aids – well, let me tell you just how much it means to a mom with a limited budget when the staff says, “You need to pick out a TOY for working so hard today!”

It is an incredible gift that goes way beyond just getting us out of Day Surgery or an appointment in one piece. It gives my daughter the opportunity to not focus on the many challenges she faces. She looked forward to putting this together all day.

So thanks to all those who think of our medically complex kiddos when giving. We really, truly love you.

Connecticut Children’s Advocates: Child Restraint Systems

Below is the testimony of Connecticut Children’s Medical Center to the Transportation Committee regarding HB 6956, An Act Concerning the Use of Child Restraint Systems.

Baby in Car Seat

My name is Luis Rivera, Program Coordinator, Injury Prevention Center at Connecticut Children’s Medical Center. I am submitting testimony in support of this proposed legislation because it would help protect children in the state by expanding the existing statute requiring child restraint systems in motor vehicles.

The mission of the Injury Prevention Center at Connecticut Children’s is to reduce injury and violence among Connecticut residents. To accomplish the mission of the Injury Prevention Center we implement four core activities: research, education and training, community outreach programs, and policy/advocacy. Child Passenger Safety has been a long held priority for our center.

Connecticut has made great strides in reducing motor vehicle injuries and deaths through public policy decisions that have served to reduce the risk of children while in the vehicle. The last major upgrade to Connecticut law regarding Child Passenger Safety was in 2005; requiring children to be rear facing in a car seat until the age of one and twenty pounds, and requiring children to remain in an appropriate child passenger safety seat/booster seat until 7 years old and 60 pounds.

Our hospital, and other child passenger safety advocates support updating Connecticut State law to include best practices regarding child restraints. This bill will require that children ride 1) in rear facing seats when they younger than 2 years old and weigh less than 30 pounds; 2) in a forward facing seat with a five-point harness when they are younger than 5 years old and weigh less than 40 pounds; and 3) in a car seat or booster seat until they are 8 years old.

This bill will also prohibit rear facing seats from being installed in a front seat of any vehicle that is equipped with an active passenger-side air bag. These recommendations are backed by the American Academy of Pediatrics. This bill would bring Connecticut’s law in line with current recommendations for child passenger safety and serve to improve the safety of child passengers. Thank you for your consideration of our position.

How Dancing Makes A Difference: Crystal’s Story

By Eliza Kanner, HuskyTHON

crystal-1_huskythonOn February 18 more than 2,500 HuskyTHON participants will dance all through the night. They will spend 18 hours on their feet, dancing to raise funds for Connecticut Children’s Medical Center. When I spoke to Crystal Torraco on a Sunday afternoon, she was enjoying a day off after spending the previous night on her feet, but rather than spending it at the student recreation center at the University of Connecticut, she was making her rounds as a Registered Nurse in the Neonatal Intensive Care Unit at Connecticut Children’s.

Crystal spent her college days heavily involved with organizations at UConn that pride themselves in community service and philanthropic efforts. She was a counselor at Hole in the Wall Gang Camp in Ashford, Connecticut, and held numerous leadership positions within HuskyTHON. Dancers are asked to find their “why,” and Crystal’s “why” has changed since working at Connecticut Children’s. “I danced for my future patients and now, I donate to those who dance for the patients I take care of each and every day,” Crystal said.

Working at Connecticut Children’s was Crystal’s first choice when applying to jobs after graduating from Northeastern University’s Accelerated Bachelor of Science in Nursing (ABSN) program. “(Being involved with) HuskyTHON allowed me to go into the hospital and really see the impact it was making. So when it came down to applying for jobs, I knew I wanted to work in a children’s hospital…the first thing that came to mind was Connecticut Children’s.”

The Neonatal Intensive Care Unit strives to have continuity of care, so Crystal is with the same patient family for an extended period of time. “We take the extra time to explain things to parents and to get them involved. We value it so much” Crystal explained.

Crystal feels the impact of HuskyTHON every day at work. “Huge fundraisers like HuskyTHON that go toward the hospital allows us to go beyond the normal supplies we need, it allows us to get newer technology, newer products. It helps us continually advance.”

crystal-huskython_dancersBabies born premature (prior to 32 weeks) or weighing 1500 grams (around 2.2 lbs.), are immediately placed in a giraffe warmer. This lifesaving incubator and radiant warmer auto regulates the temperature to provide a healing environment for the baby. HuskyTHON’s goal is to utilize the money raised on “100K in One Day” to purchase four giraffe warmers for the Neonatal Intensive Care Unit.

“Even one giraffe makes all the difference in a baby’s life, and the care we can provide,” Crystal said. “That’s their safe place–it’s what is keeping them warm and happy and lets us do our job safely and effectively.”

“It makes a huge difference. If we didn’t have the resources and the technology that allows us to do our job every day, it would be really hard,” Crystal said when asked about the impact HuskyTHON has for Connecticut Children’s.

“It’s hard to really see the impact you’re making when dancing, but to see it day by day in my job–and be able to do my job because of the impact HuskyTHON has–it’s huge. It’s really awesome.”

HuskyTHON Hits Home for Student Dancer and Former Patient

nicki-in-hospital-photo-1For the last 15 years, Nicole “Nicki” Cartier has had a close relationship with Connecticut Children’s Medical Center. She describes Connecticut Children’s as a “home away from home,” which makes perfect sense considering the amount of time she has spent there over the years, and the connections with staff she has made along the way.

She was first brought to the emergency room in March of her kindergarten year with what seemed like the flu.  Nicki’s parents thought they would be in and out of the hospital with a quick check-up and prescription for antibiotics. After doctor’s examined Nicki, they realized she was much sicker than anyone originally anticipated. A polyp in her intestine burst, causing an extremely rare bacterial infection to spread throughout her body. She was rushed into her first emergency surgery, which lasted 22 hours. Doctors described her situation as “one-in-a-million” and worked relentlessly to stabilize Nicki, as she returned to the operating room daily for two weeks.

After she made it through her first few surgeries, doctor’s informed her parents that there was still a very long road ahead. Nicki spent the next five months in the Pediatric Intensive Care Unit at Connecticut Children’s on life support as doctors continued to work to repair damages from the initial infection. Nicki lost a kidney, two thirds of her diaphragm, upper leg muscle and lower back muscle. When she was finally strong enough, doctors were able to take her off some of her medications and move her to a recovering inpatient floor. She worked countless hours with physical and occupational therapists to regain skills such as talking, eating, sitting, standing and writing. Day by day Nicki worked to get better in hopes that one day she would be able to go home and return to a more normal life. After 225 consecutive days at Connecticut Children’s, she was able to go home.

nicki-in-hospital_photo-2Spending seven months in the hospital is not something that the typical five-year-old will ever have to deal with, but Connecticut Children’s was there when their help was needed. As a result of losing muscles in her leg, Nicki should not be able to walk, but through physical therapy, and lots of hope, Nicki was able to train other muscles to compensate for it.

“My experiences at Connecticut Children’s were some of the toughest parts of my entire life and I wouldn’t wish that upon any other child, but it has also changed my life for the better and changed my whole perspective on life, which is something I am incredibly grateful for. Every day is truly a blessing,” Nicki said.

Nicki has stayed very connected with staff at the hospital since her discharge. Through the years of follow-up surgeries and physical therapy, Nicki and her family are always looking for ways to give back to Connecticut Children’s and she has shared her story at numerous fundraisers to benefit the hospital. “They saved my life and the only way I know how to return the favor is to spread awareness of the amazing work they do there, in hopes of other little boys and girls being able to receive the same quality care I received when I was sick,” Nicki said when asked why she gives back.

In 2007, Nicki was selected to be the Connecticut Ambassador for Children’s Miracle Network Hospitals where she was able to attend a nationwide seminar filled with children from every state who were also advocating on behalf of their local children’s hospitals. This was the first year that Nicki was invited to attend her first HuskyTHON. When looking back at her first HuskyTHON experience, Nicki recalls “As a 10-year-old child, I felt like a rock star having hundreds of college kids cheering for me and raising money for kids like me.” Growing up was hard for Nicki because not many children understood what she had medically endured, so being able to spend time with UConn students who understood the cause and were so passionate about it made her feel so special.

nicki-and-dr-bourqueNicki never missed a HuskyTHON, and when it was time for Nicki to apply to colleges, UConn was on the top of her list. “Everyone always told me to pick a school where I felt like home. Out of all the colleges I’ve ever visited, UConn, especially during HuskyTHON, was where I felt most at home.” She received her acceptance letter three days after HuskyTHON in 2014 and put in her deposit to attend UConn that same day.

Freshman year, Nicki joined the HuskyTHON Management Team, seeing the dance marathon from a new perspective. “Thousands of UConn students have put in countless fundraising hours to support patient like me. It has been amazing to be on the other side and be able to dance in support of other kids at the hospital. I know exactly what they are going through and that just pushes me to work harder to make the event even more successful year after year.” She has made lifelong connections with other families from the hospital, and HuskyTHON is the one event every year that brings them all together.

Nicki continues to be an inspiration to her peers. “It has meant the world to me to see so many other UConn students become so passionate about something that has been such a large part of my life. I’ve had an amazing success story through Connecticut Children’s and it is such a great example of the amazing things can be done there.” This year’s event will be Nicki’s third HuskyTHON on the Management Team.

nicki-1-huskython-photo“The amount of money we have been able to raise is incredible, but what inspires me to keep going is seeing the way it has made such a positive mark on the UConn community. It is amazing to be able to say I was a part of making that happen.” Nicki continues to be amazed at the time students put into making the event a success, even if they have never personally received care at Connecticut Children’s.

HuskyTHON’s success is a reflection of the dedication students at UConn have to making a difference in the lives of kids in Connecticut. “College is a time for making lasting memories, and for so many of us, the best memories have been at HuskyTHON because it has allowed us to use our energy to make a difference and together we have been able to do something incredible.”

 

 

Connecticut Children’s Advocates: Safe Driving Instruction Courses

Below is the testimony of Connecticut Children’s Medical Center to the Transportation Committee regarding HB 5680, An Act Concerning Parent Attendance at Safe Driving Instruction Courses.

Man holding car keys

My name is Kevin Borrup, Associate Director, Injury Prevention Center at Connecticut Children’s Medical Center. I am an Assistant Professor of Pediatrics at the University of Connecticut School of Medicine. I am submitting this testimony in opposition to the proposed bill which would allow some parents of prospective teen drivers to skip the mandatory two-hour parent/teen safe driving class.

Before commenting on the bill, I want to provide you with some background about Connecticut’s only hospital dedicated exclusively to children. Connecticut Children’s is a nationally recognized, 187-bed not-for-profit children’s hospital serving as the primary pediatric teaching hospital for the University of Connecticut School of Medicine and the Frank H. Netter MD School of Medicine at Quinnipiac University, as well as a research partner of The Jackson Laboratory.

Families across the region rely on our ability to deliver the highest level of care. When another hospital is unable to provide what a child requires, we are ready to help. Last year, 3,906 patients required a transfer to Connecticut Children’s from another hospital in order to obtain the high level of specialized pediatric care they needed.

Through our Office for Community Child Health, Connecticut Children’s ensures that families have access to a comprehensive system of community programs and services that supports them in promoting their children’s optimal healthy development. Our programs tackle critical contemporary issues in children’s day to day lives that can adversely affect their health and development including asthma, home hazards, domestic violence, teen driving safety, teen suicide prevention, and sexually transmitted diseases. Visit our Advancing Kids blog at https://advancingkids.org/.

The mission of the Injury Prevention Center at Connecticut Children’s is to reduce injury and violence among Connecticut residents. To accomplish this mission, we implement four core activities: research, education and training, community outreach programs, and policy/advocacy. Teen driving safety has been a long held priority for our center.

Connecticut has made great strides in reducing teen motor vehicle injuries and deaths through public policy decisions that have served to reduce the risk for teens. The last major upgrade to Connecticut’s graduated driver licensing law was in 2008 when the mandatory two-hour parent class came into effect.

Our hospital, the driver training schools, and advocacy groups all support keeping those 2008 upgrades to the law intact. This bill would serve to weaken a very important aspect of the law which ensures that teens and parents are aware of the laws and their responsibilities. When parents have the “driving” talk and stay active in their child’s driver training, and post-licensing driving, teens are safer. Should this bill move forward, we are endorsing a view that the safety of a child is less important than ensuring that parents do not experience an inconvenience.

And, what do parents say about this class? Parents agree that attending this class is worthwhile with 85% agreeing that the course was excellent or good, and 90% agreeing that the class helped them as a coach of their teen.*

This bill is only about the convenience, or inconvenience, that is prioritized by some parents over safety. My response: let’s put safety first and make sure that every teen who goes through this process has the attention of their parent. It matters. Thank you for your consideration of our position.

* from a study by Neil Chaudhary of Preusser Research Group in 2010 and a study of driving schools conducted by Kevin Borrup of Connecticut Children’s Medical Center in 2014.

A Clinical Perspective: My Visit to Haiti

Dr. Brendan Campbell, surgeon at Connecticut Children’s Medical Center, speaks to his clinical colleagues about his most recent trip to Haiti and the challenges and opportunities that present themselves.

campbell-in-haiti

The poverty, pathology and ethical dilemmas you collide with in Haiti force you to think creatively about clinical problems because the options for establishing a diagnosis, providing treatment and dealing with complications are limited.  Surgical volunteerism at Hopital Sacre Coeur in Milot makes you think differently about what providing high quality surgical care means and puts your troubles back home in clearer perspective.

One of the hardest things to appreciate before you try and perform a surgical procedure in Haiti are the challenges of putting the infrastructure in place that allow it to happen.  The CRUDEM organization which runs Hopital Sacre Coeur does a remarkable job making sure that these basic requirements are met (i.e., electricity, running water, security, and hospital staff), so that the medical and surgical teams that visit for one week at a time can focus on providing clinical care and teaching.  For us this means sorting out which pediatric surgical cases exceed the capabilities of the local surgeons, and how we can best help the surgeons there while providing pragmatic education.  The Lancet Commission on Surgery proposed a group of 3 bellwether procedures (i.e., Caesarian section, laparotomy, and treatment of open fractures) to identify hospital systems operating at a significant level of complexity that would allow them to do most other surgical procedures.  Hopital Sacre Coeur meets this standard, but it’s not clear how accurately this standard can be extrapolated to pediatric surgical cases.  The emerging field of “global pediatric surgery” in low and middle income countries is largely uncharted territory about which we still have a lot to learn.

The unique thing about trying to provide safe and responsible pediatric surgical care in Haiti is that you have to get comfortable feeling really uncomfortable.  If you are easily frustrated, prone to temper tantrums in stressful situations and are unable to adapt to changing circumstances – Haiti’s austere clinical environment isn’t for you.  Cancellation of scheduled cases for spurious reasons (without speaking with us), poor quality basic surgical instruments and scrub techs unfamiliar with pediatric surgical customs and priorities are a few of the challenges we encountered this past week.

In Northern Haiti, we have identified an opportunity to help the local surgeons manage patients with anorectal malformations. While we don’t yet have a “mega-team” (i.e., fully staffed/equipped anesthesia and OR team) geared toward a single congenital anomaly (e.g., cleft palate surgery, cardiac surgery) that some groups have developed, we’re making some progress in that direction.  Simple things that we take for granted back home can be a real impediment to getting these fairly complex reconstructive cases done efficiently and safely in Haiti.  A few examples include not having equipment to optimally position the patient (we’re used to doing these operations on babies, many Haitian patients are older/larger), poor quality surgical instruments that won’t handle small needles and substandard lighting in the operating room.

Virtually all the kids we see who were born with anorectal malformations, survived beyond the neonatal period because Haitian general surgeons gave them colostomies when they were newborns (i.e., relieving the intestinal obstruction and allowing them to feed and grow).  This is lifesaving for the patient and allows the definitive procedure to be delayed indefinitely.  The challenge for the surgeon is that with the more complicated anomalies there is no option for a pressure-augmented distal colostogram and no equipment to perform vaginoscopy/cystoscopy for the purpose of surgical planning…

So, at the end of our third short-term surgical trip to Hopital Sacre Coeur I think we’re getting a little better. We understand that these trips should not occur in isolation.  Having an unflappable pediatric anesthesiologist (Rich Kuntz) makes the anesthesia part safe.  We have a spreadsheet to track our anorectal malformation cases, monitor our results objectively and to try and plan our case list ahead of time.  Our team led by Dr. Rob Freishtat (Children’s National) included nurses, a pediatrician, a pediatric ER doc, physician’s assistant, a respiratory therapist and two child life specialists and they all did an amazing job and were a lot of fun to spend time with.  Next year we hope to bring a scrub tech from Connecticut Children’s and Drs. Hight and Kuntz both want to return.

Visiting the same hospital and building relationships with the local surgeons and staff is mutually beneficial.  To quote another surgeon, “It is much better to pick one country and serve it well, than to hopscotch all over Africa, going everywhere and truly getting nowhere.” (World J Surg 2010;34:466-470). We still have a lot to learn about providing pediatric surgical care in Haiti, but hopefully we’re getting somewhere, and making the lives of a handful of Haitian children a little better along the way.

Life Experiences Shape Surgeon’s Desire to Care for Children

This article was first published in the Hartford Business Journal. Dr. Christine Finck, Surgeon-in-Chief at Connecticut Children’s Medical Center and associate professor and principal investigator at UConn Health, was recently named as one of nine Health Care Heroes in Greater Hartford. The title recognizes individuals working in health care who “share a common passion for the services they provide and life-changing impacts they have on the lives of others,” and “[make] a difference in the community every day.” Finck and her fellow award-winners were honored in December at the Connecticut Convention Center in downtown Hartford.

30ccmc160108As a pediatric surgeon, Dr. Christine Finck sees her share of babies born with esophageal atresia, a defect where the tube between the mouth and stomach fails to connect. Finck treats up to a dozen infants born with these long gaps in their esophagus each year.

Typically, treatment involves closing the gap with a piece of the stomach or intestines – which brings the possibility of rejection – or stretching the esophagus by pulling the two ends together. That procedure requires a long hospital stay, Finck said, and can possibly be painful for the babies.

“Here’s this poor kid in the ICU who’s getting their esophagus stretched,” said Finck, who is surgeon-in-chief at Connecticut Children’s Medical Center. “It’s kind of a morbid type of procedure. I just felt that there should be a better way.”

As an associate professor in the Department of Pediatrics at UConn Health, Finck and a team of researchers are working hard to find that way, using tissue engineering to develop new methods for treating the condition, which affects one in 4,500 babies.

Finck has partnered with Biostage, a biotech company that has developed a polyurethane tube known as a scaffold that can be seeded with a baby’s own cells. The scaffold is then implanted as a placeholder to bridge the gap in the esophagus. Over time, the esophagus begins to grow around the scaffold, Finck explained.

“After about three weeks, we take out the scaffold and let the rest of the esophagus regenerate,” said Finck. The scaffold is then replaced with a stent to keep the esophagus open. When removed, “a fully regenerated esophagus is left behind,” she said.

Cells for the procedure can be taken from biopsies of the esophagus, from stem cells in amniotic fluid, or from bone marrow. Her team is currently examining which cells produce the best outcome. The procedure can also be used for adults with esophageal cancer or kids whose esophagus is burned after ingesting lye or other caustic substances.

Finck said clinical results in animal models have been successful. “We can do gaps of about 10 centimeters now, which is novel,” said Finck, whose research also focuses on lung disease in premature infants. She expects the procedure will be available for patients in about five years.

A native of Long Island, Finck earned her bachelor’s in biology from Boston University in 1990 and her medical degree from the State University of New York Health Science Center in Syracuse in 1994. She did her fellowship in pediatric surgery at Arkansas Children’s Hospital, and spent five years at St. Christopher’s Hospital for Children in Philadelphia before joining Children’s, where she has high praise for her team.

“Having a team that works and shares your vision is the best,” she said. “That’s when you get things accomplished.”

Growing up, Finck always wanted to be a doctor and loved taking care of children, a trait she inherited from her schoolteacher mom. She said she fell in love with pediatric surgery “the minute I did it,” and enjoys building relationships with patients’ families.

Reflecting on her career, Finck said two unexpected life events profoundly influenced her. “My first husband passed away from a brain tumor when I was in fellowship,” she said. “That gave me a true vision of being on the other side – of being at the mercy of hospital care.”

Years later, while working in Philadelphia and remarried to her current husband, she adopted her daughter Isabelle, one of her tiny patients.

Isabelle, now 11 and healthy, was born with her intestines outside her body, a condition that required multiple surgeries. Her mother, a teenager with no family support, had confided in Finck that she wasn’t able to care for the infant.

“It just came out of my mouth: ‘I’ll take her,’” Finck recalled. “I remember she turned all red and said, ‘That would be wonderful because you know her best.’”

Finck, who also has two biological children, 8 and 5, said her experience parenting an infant with a complex medical condition continues to drive her research, and helps her empathize with her patients’ families.

“She’s one of the most compassionate and dedicated people I’ve ever met,” said Shefali Thaker, a postdoctoral fellow working as a research associate in Finck’s lab. “She will push and strive to see that all of the children she interacts with are comfortable, and that their families are comfortable. She goes above and beyond every single time.”

Post doc and research associate Todd Jensen called Finck a wonderful mentor to new physicians beginning their research. “She’s supportive and helps them find their niche,” he said.