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: 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.

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.”

 

 

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.

The Road to Diagnosis: Anthony’s Story

received_825234961033It has been a long and winding road for the Greco family. After numerous diagnoses, their son Anthony finally learned what had been causing his pain and suffering…but getting to this point was not easy. After visiting his local pediatrician in February of 2016, Anthony was originally diagnosed with tension headaches; however it would all turn out to be much more.

The headaches slowly became more persistent and Anthony soon began experiencing additional symptoms, like vomiting and fever. Anthony’s mother Danielle rushed him to their local ER, where a CT scan would show that all was normal…but that night would tell a different story.

“Anthony awoke with pain throughout his body, one-sided paralysis and was unable to speak. Thinking he was having a stroke we called 911 and went back to the ER, where he saw neurology and was diagnosed with a hemiplegic migraine. Various medicines were given that weren’t touching his headaches, helping his vomiting, nor alleviating his new onset of eye pain. We were beside ourselves.”

After undergoing a spinal tap in June, Anthony was diagnosed with meningitis and immediately rushed to Connecticut Children’s Medical Center.

“A whole slew of tests were done and many consultations with many different doctors. Nothing was adding up. All blood tests and cultures were normal. The normal meds given for meningitis weren’t taking it away, but he was feeling better” recalls Danielle. “An MRI was done and showed increased intracranial pressure – a whole lot of fluid buildup on his brain and spinal canal. It was then deemed that the reason he was feeling better was because the spinal tap took away some of the fluid that was pressing on his central nervous system and causing all these issues.”

Anthony was then diagnosed with HaNDL, a rare headache disorder. For the next month, he would have no episodes, until mid-July when all his symptoms would return. “The headaches, vomiting, severe eye pain, paralysis and speech difficulties all came back. He was sent for another spinal tap. Issues alleviated again until a few weeks later, when his episodes and symptoms returned. We again went for another spinal tap, but this time his white blood cell count had sky rocketed.”

Anthony was once again rushed to Connecticut Children’s and it is here the Greco’s would finally discover what had been causing his symptoms all along.

img_20161125_122951“Our Neurologist brought Hematology and Oncology on board. A spinal tap and a cytology of the fluid was done on August 24, 2016. The next day we were informed that Anthony had cancer of his central nervous system. A cancer called B Cell Lymphoblastic Lymphoma…

Anthony has been receiving treatment with the Center for Cancer and Blood Disorders since his diagnosis and we couldn’t be happier with the care he has received. A month into treatment all cancer cells were gone. He unfortunately has to endure a total of 2 1/2 years of chemotherapy to keep the cancer away. Had it not been for the doctors at Connecticut Children’s Medical Center, I really don’t know where we’d be right now. They stopped at nothing to find out what was going on with our son. To them, we are truly grateful.”

Extraordinary Outcomes for an Extraordinary Little Girl: Isabella’s Story

isabella-1Isabella O’Connell was just 3 months old when her pediatrician noticed ‘cafe au lait’ spots suddenly appearing on her skin. “The spots were appearing at such a rapid pace” said Isabella’s mother, Melissa Kulak. “Thankfully, he referred us to a neurologist at Connecticut Children’s Medical Center.”

Shortly after being referred, Isabella had her first appointment at Connecticut Children’s Division of Neurology, where she met Dr. Francis DiMario. Dr. DiMario would finally provide the answers Melissa had been waiting for…a diagnosis no one could have expected.

Isabella had Neurofibromatosis, a rare neurological condition which occurs in approximately 1 in 4,000 births each year. The genetic disorder can cause tumors to grow on nerve tissues and even on or underneath the skin.

Following her diagnosis, Isabella experienced very little symptoms as a result of her treatments, but in early  2016 that would all change. The 3-year-old began feeling a pain on her side where she currently had a band of tiny spots.  At her 6 month checkup, Dr. DiMario suggested an MRI that would reveal 2 tumors growing on Isabella’s right and left optic nerve.

“From that moment on, we also began seeing Dr. Eileen Gillan of the Center for Cancer and Blood Disorders. Dr. Gillan has been keeping a close eye on Isabella’s condition ever since” said Melissa.

Three months after that first MRI, a follow up would discover a new tumor growing at the base of Isabella’s head – a tumor that was causing her severe hydrocephalus. It was more devastating news that Melissa did not want nor expect to hear.

isabella-2“That 3 month MRI came and our world got flipped upside down. Within a week we had seen Dr. Marcus Bookland of Neurosurgery, scheduled a surgery date, underwent a biopsy and had a shunt placed.”

The procedure was a successful one and Melissa is happy to report that Isabella’s tumors are in fact shrinking as a result of her treatments and medication. She is currently on her third round of targeted chemotherapy. “So far it is working amazingly. We had our 6 month MRI to make sure Isabella’s shunt is working properly and found that her tumors have shrunk quite a bit. She also no longer has any trace of hydrocephalus.”

“In one word I would describe our experience so far as extraordinary. Although, Connecticut Children’s definitely deserves more than one word.”

Kids Helping Kids: Christopher’s Toy Drive

 Becky, shares her son Christopher’s inspiring story and why he wanted to give back to fellow patients at Connecticut Children’s this holiday season. 

img_0708We brought Chris to the ER in January 2015 after he was unable to walk. Doctors found a tumor on his spine which began a whirlwind of scans, needles and a hospital stay that, at the time, we didn’t know how long would last.

The one thing that Chris could look forward to and that we could use as a reminder to get through the next procedure, chemo or scan was the prize box and toys he received for being so brave. Kelly and the rest of the staff at Connecticut Children’s Medical Center were instrumental in helping us through one of the toughest times we have faced as a family and one way we felt we could thank them was by giving back.

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Last December, I wanted Chris to give back to the hospital in a way that was meaningful for him and something that was feasible to do year after year. He decided that a toy drive was a good idea because he always looked forward to getting a toy at the end of his visits. He wrote his letter and made a list of family and friends that he would like to ask and send his letter. After the toys were donated, he wrote thank you notes to those who donated to show his appreciation. He did the same thing this year. (Now that he is in first grade, his letter was done much more independently!) He added several people to his list and those that he asked were so excited to help him.

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The best part is seeing the excitement on Chris’ face when he looks at the toys people donated as well as when he was giving the toys to Kelly. We hope to continue this each year and that it gets a little bit bigger to be able to make even more kids smile. We are so proud of Christopher for wanting to continue this tradition and for being able to see the importance of giving back!