Steven’s Incredible Journey Begins with 140-Day NICU Stay

steven-lefevre-nicu-photoMegan Lefevre’s first pregnancy was a difficult one. She threw up about three times a day and lost 12 pounds in the process. But the difficulties she endured during her pregnancy did not prepare her or her husband, Paul, for the challenges that lay ahead when their son, Steven, was born prematurely at 27 weeks on Oct. 24, 2012 –three months early.

“I woke up with terrible back pain and my stomach was as hard as a rock,” the Woodbury resident recalled. Following a 12-hour stay in a local hospital, Megan was transferred to UConn Health at John Dempsey Hospital for the next four days. While there, she gave birth to Steven, who weighed 2 pounds, 15 ounces, and measured 15½ inches long. But after 28 hours in Connecticut Children’s Neonatal Intensive Care Unit (NICU) in Farmington, Steven was rushed to Connecticut Children’s Medical Center NICU in Hartford, where he underwent emergency surgery to fix a perforation in his small intestine.

It was the first of several surgeries, dozens of procedures and “countless scares” for Steven’s parents. Steven remained in Connecticut Children’s Level 4 NICU for the next 140 days and returned several times to the Medical Center for follow-up treatment and hospitalization.

Big Scares
“Our first big scare was driving from Farmington to Hartford,” said Megan, who teaches first grade in Oakville. “We worried whether our baby would live.” “At one week old, Steven had a grade 2 brain bleed and increased fluid,” Megan said. “The following week, he had a grade 3 brain bleed with increased fluid. The blood vessels in premature babies’ brains are very fragile and can burst easily,” she explained.

lefevremomchild4x6Their second big scare came when Steven needed surgery for hydrocephalus, a condition in which fluid accumulates in the brain after brain bleeds. Initially, a reservoir was placed from which the neurosurgeons could draw off the extra fluid as needed. After his brain bleeds, Steven had pauses in his breathing because of the increased pressure in his brain from his hydrocephalus.

“His heart rate would drop and his blood oxygen level would drop,” Paul said. “Sometimes he would turn gray, other times he would turn blue and need oxygen resuscitation.” After undergoing shunt surgery to permanently drain the extra fluid, Steven was remarkably better, his father said.

Overcoming the Obstacles
From pneumonia and chronic lung disease to an enlarged liver and urinary tract infections, Steven fought many battles in his first few days, weeks and years of life. From weekly eye exams for grade 3 retinopathy of prematurity that can lead to blindness – to surgery for a tethered spinal cord – he also underwent numerous procedures and has been followed by many specialists along the way, including Marilyn Sanders, MD, a Connecticut Children’s neonatologist, who cared for Steven during his NICU hospitalizations. “He had many problems typically seen in very preterm babies and some unusual ones, including surgical and growth concerns,” said Dr. Sanders, who continues to follow him in Connecticut’s Children’s Neurodevelopmental Follow-up Program. “Given how sick he was in the NICU, he has done amazingly well.”

“Steven came home from the hospital in March of 2013,” his mother said. “He began rolling around at 10 months, sitting at 12 months, crawling at 18 months and walking at 2 years of age.”

In October 2015, at age 3, he started preschool. “He can walk, he can talk. He’s an easygoing child, who is very likeable and very social,” Megan said.

steven-lefevre-family-photo-fall-2016Grateful for Care
Steven’s family – which includes half-brother Matthew, 17, and sister Shayla, who turned 1 in March – is happy about his progress.

“We are so grateful for how well he is doing because of the amazing help he received,” said Megan, who keeps in touch with many of Steven’s caregivers at Connecticut Children’s. “He had the best care possible.”

Connecticut Children’s Advocates: Kelly’s Story

Kelly Ray, patient at Connecticut Children’s Medical Center, shares her inspiring story with members of the  Appropriations Committee on February 16, 2017.

fullsizerender-00000005Senator Osten, Senator Formica, Representative Walker, members of the Appropriations Committee, thank you for this opportunity to speak to you all today on behalf of the hospital that saved my life. My name is Kelly Ray, I was born here in Connecticut, I am fourteen years old and a pediatric cancer survivor.

On August 27, 2012, my mom noticed a strange swelling on my left shin and took me in for an X-ray. That X-ray led to a slew of tests and finally, a biopsy of my shin bone to inspect a suspicious lump. When I awoke from surgery at Connecticut Children’s, I was diagnosed with bone cancer: Osteosarcoma, in my left tibia.

Dr. Michael Isakoff, (also known as Dr. Mike) my oncologist at Connecticut Children’s, explained that I would need almost a year of intensive chemotherapy, that I would lose my hair and that I’d have to spend over 120 nights in the hospital and have 5 surgeries throughout the course of treatment.

No one likes to be sick and no one ever wants to have to be in the hospital. But, there’s a
difference at Connecticut Children’s. Connecticut Children’s knows what kids need to get
through the very long and difficult treatments that are required to save their lives.

As I underwent the often painful and exhausting treatment, they always tried to make me as comfortable and happy as possible. I spent most of my inpatient time at Connecticut Children’s on the eighth floor. All of the rooms at Connecticut Children’s are clean, bright, spacious, private, family friendly, and had an extra couch/bed or cot for a parent to stay overnight.

fullsizerender-00000007The amazing thing about Connecticut Children’s is that even though they are so good at making kids feel comfortable, they are even better at healing them and making them well. We are so blessed and fortunate to have this amazing hospital in our state.

Other children come from all over the Northeast to get cancer care in Connecticut. Doctors bring their children to Connecticut Children’s because the care is outstanding, and the services, technology and facilities are state-of-the-art.

In November of 2012, my left leg was amputated to ensure that all of my cancer was gone. This was a day that changed my life forever; however, not in the ways I had originally expected. My team at Connecticut Children’s helped me get back onto my feet quickly. Thanks to my fantastic doctors, physical therapists, and nurses at Connecticut Children’s, I began to take my first steps in a new direction as soon as I could.

I finished chemotherapy in May of 2013, and since then, with the help of Connecticut Children’s, I have skied, surfed, biked, ran, swam, sailed, and done things I didn’t even know were possible.

fullsizerender-00000002Thanks to the fantastic care I received at Connecticut Children’s, I am able to live a life filled with amazing experiences. Dr. Mike and the rest of the team at Connecticut Children’s not only saved my life, but when they gave it back to me, I discovered that it had been enriched and that I could live without limits.

Once again, I thank you for allowing me the opportunity to speak with you about my experience at Connecticut Children’s Medical Center. By making children well in our state, Connecticut Children’s continues to provide the world-class care that is critical to Connecticut’s future.

As you consider your priorities in planning your budget for the coming year, please remember the financial needs and good works of the incredible hospital that saved my life and the lives of so many other children in our state and the Northeast.

Thank you.

Connecticut Children’s Advocates: Concussions and Youth Athletic Activities

Below is testimony of Connecticut Children’s Medical Center to the Committee on Children regarding Senate Bill 769 An Act Concerning Concussions and Youth Athletic Activities Conducted on Public Athletic Fields.

Senator Moore, Senator Suzio, Representative Urban, members of the Committee on Children, thank you for the opportunity to share my thoughts about Senate Bill 769 An Act Concerning Concussions and Youth Athletic Activities Conducted on Public Athletic Fields.

We are David Wang, MD, MS, Medical Director and Carl Nissen, MD, from Elite Sports Medicine at Connecticut Children’s Medical Center. We are submitting testimony in support of this proposed legislation but would like to emphasize that when it comes to concussion education, it is critically important to consider what is appropriate education, who is best suited to deliver that information and how can it be done most effectively.

A concussion is a functional injury to the brain resulting from a traumatic hit to the head, face, neck or a blow to the body that delivers an impulsive force to the head. Concussions require prompt diagnosis and treatment to ensure a smooth and successful return to academics and athletics. As one of the most common sports injuries in school aged children, Elite Sports Medicine at Connecticut Children’s has developed a comprehensive, sports-related concussion program for adolescent and young adult athletes.

We are pleased that the State of Connecticut has taken concerns about concussions seriously over the past several years, enacting legislation that will help protect young athletes. We support Senate Bill 769 because any opportunity to expand awareness of and education about concussions in young athletes is a step in the right direction. Systems and protocols that help coaches, parents and athletes know the facts about concussions rather than the myths will help more kids stay safe and healthy. We would be happy to serve as a resource for you as you debate this proposed legislation.

Thank you for your consideration.

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.”