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.”

Strength for Samuel

By Allison S.

strength for samuelMy son Samuel, was born last summer and diagnosed at birth with Osteogenesis Imperfecta, type 3. He was born with four fractures and spent the first month of his life at Connecticut Children’s Medical Center undergoing testing, surgery, and infusions.

He has already suffered at least ten known broken bones since birth, and has had two additional surgeries. He sees several doctors at Connecticut Children’s on a regular basis being followed mainly by orthopedics, genetics, ENT, GI, endocrinology, neurosurgery, pulmonology and audiology.

Samuel also has kyphosis of his spine and wears a brace for support daily. He struggles with nutrition and as a result has a feeding tube. Samuel also had pretty significant hydrocephalus and had a shunt placed in April. He deals with much more than the average baby but handles each challenge so incredibly well with a smile on his face. He is a strong and happy boy.

We have been very pleased with the care Samuel receives at the Medical Center. He has met wonderful doctors, nurses, PCAs, and medical personnel. Thank you Connecticut Children’s for making a difference in our son’s life!

To learn more about this brave little boy and his inspiring story, please visit the Facebook page Strength for Samuel.