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.

Support for Connecticut Children’s from Across the Globe!

by: Denise Scott, Jillian’s mom

They’ve traveled all the way to South Africa but still remember the needs at home here in Connecticut. To show their support of Dancer’s Week for Huskython from Cape Town, South Africa, UCONN’s Senior Nursing students listed above took this picture earlier in the week. They all will participate in Huskython in March 2015 which directly benefits CT Children’s!

nursing students south africa

Front Row: Nicole Jubelirer, Nicole Hopper and Lauren McKulla  Back Row: Katrina Zawasky, Jillian Scott, Paige Wlochowski, Gabby Aguila and Staci Godbout

“We dance so that one day kids can see a view like this —>”

 

This year sixteen Senior UCONN Nursing students are studying abroad in Cape Town, South Africa for their fall semester. They are attending classes two days a week at University of Cape Town with a UCONN professor and also have three days a week of clinical rotations in which they will complete their Maternity and Pediatric rotations. They will return to Connecticut in December.

The funds raised at Huskython 2014 benefited the CT Children’s Cardiac Wing. These guys are already looking forward to getting their dancing shoes on again in support of CT Children’s & Huskython 2015 in March!