Great Kids & Families
A Great Summer is Just What the Doctor Ordered
recently named Connecticut's 2012
Children's Miracle Network Hospital's
Champion Child. Each year, Connecticut
Children's selects a child to represent
the Medical Center as part of our
standing as the state's only Children's
Miracle Network Hospital.
Children across Connecticut are looking forward to summer vacation and Olivia Belfonti is no different. Olivia, of Southington, is planning to spend as much time as she can swimming and riding bikes with her big sister Maddie. All fairly normal activities, except that Olivia is far from normal. She’s exceptional because she’s a survivor.
Part way through Tricia Belfonti’s pregnancy, she learned that her unborn daughter had a congenital heart defect, a condition known as pulmonary atresia. The defect was described to the Belfontis as “having half a heart.” Tricia’s obstetrician told her that the defect couldn’t be fixed and her daughter would die shortly after birth. Devastated, Tricia and her husband Arnie turned to their pediatrician for advice and that’s when they found Connecticut Children’s.
“We were without hope. But Dr. Felice Heller, of Connecticut Children’s, called us and said, 'Don’t worry. We’ve seen plenty of these. Your daughter will be fine.' It’s impossible to put into words how much that meant to us,” Tricia recalled. “We spent the following weeks reading everything we could about Olivia’s condition and preparing for her birth.”
Less than 48 hours after birth, Olivia had her first operation. Eight days later, she was home. At 4-months-old, she had the next planned heart surgery. At six months, another surgery to repair an intestinal problem commonly associated with congenital heart defects. Tricia notes, “It was difficult for all of us seeing Olivia undergo so many surgeries in such a short period of time. But everyone at Connecticut Children’s kept us informed at each step of the way. We knew there was a plan and we were thankful for the great support and communication from Connecticut Children’s.”
At age four, Olivia had her third and hopefully last heart surgery. “We could tell it was time for this surgery. In the days and weeks leading up to it, Olivia’s energy level dropped to the point that she could barely climb a set of stairs. I could actually hear her approaching, her breathing was so labored. But then just nine days after surgery, she was home and literally running up and down the driveway. It was hard to believe it was the same little girl who was struggling to do simple things less than two weeks before.”
Now seven, Olivia has taken up dance—this year she tackled Hip Hop and next year she has her heart set on ballet. Olivia’s mom added, “She’s doing so well in school, too. When people find out about her medical history, they are completely surprised. This is exactly what we hoped and dreamed for. Olivia is not cured, and she will need some level of ongoing cardiac care, but she is bright-eyed and spirited as ever. Just a normal second-grader.”
Giving Back to Connecticut Children’s is a Sweet Project for a Former Patient
2 pounds when she was born in 1998. Today,
she is an honor student at Lincoln Middle
School in Meriden where she also plays on
the school volleyabll team.
Connecticut Children’s achieved an important milestone when the NICU at the UConn Health Center operationally became part of the neonatology program at Connecticut Children’s. Ally Lewis, who received care at both NICU’s as a newborn, is an inspiration to any parent of a premature baby. Actually she’s an inspiration to anyone and everyone.
And despite some physical challenges that have affected her since birth, the Meriden seventh grader is an honor student, school volleyball player and even finds time to give to Connecticut Children’s Medical Center.
Last spring, Ally began selling cupcakes via “Ally’s Cupcake Cart” with all proceeds going toward the purchase of toys for patients at Connecticut Children’s. With the help of one of her best friends, Aislinn Quinn, Ally parades a brightly painted pink wagon throughout her neighborhood selling cupcakes. About 50 cupcakes are made for each trip. “I really have fun with the cupcake cart and just wanted to give something to the kids in the hospital,” Ally said.
Ally was born at 26 weeks on Dec. 22, 1998 weighing only 2 pounds, 13 ounces. Her parents David and Gail never left her side in the Neonatal Intensive Care Unit at the University of Connecticut Health Center in Farmington.
“If one of us couldn’t be with Ally because of work, we always made sure the other was there for her,” said Ally’s mother Gail.
Gail and David Lewis said that although it was a very difficult ordeal at times, they credit the support they received from Gail’s parents and their neighbors. “We would often come home to a hot meal that was made by one of our neighbors,” said David Lewis. “And Gail’s parents were a tremendous help with Ally’s older sister, Chelsea. It’s during those difficult times when you really find out who your loved ones are.”
David recalled his family’s first Christmas in the NICU just three days after his daughter was born.
“It started off as the worst Christmas ever,” he said. “The NICU was so quiet and at one time, Gail and I were the only ones there. Up to that point we were told that Ally’s prognosis was pretty grim. Finally, after a series of examinations, a nurse smiled at us and said that Ally was going to be okay.”
Shortly after her discharge from the UConn Health Center in early 1999, Ally was admitted back to the hospital, but this time it was to Connecticut Children’s. A severe case of respiratory syncytial virus filled her lungs with fluid and she was transferred to the Emergency Department before being admitted to the Connecticut Children’s NICU.
Over the next few years, Ally would travel to Connecticut Children’s twice a week to see numerous specialists in neurology, pulmonary medicine and gastroenterology. Today, her follow-up visits have been reduced to once a year.
“Everyone at Connecticut Children’s – starting when you come into the Emergency Department to the NICU and all the clinics – have always been very kind to us,” said Gail Lewis.
One of the conditions that Ally was born with is a chronic disease known as cytomegalovirus, which David and Gail Lewis said affects about 1/3 of her brain. Ally cannot hear in her right ear and is about 60 percent deaf in her left ear.
“Nothing stops her,” Gail Lewis said. “Whether it’s school, sports or the cupcake cart, when she has her sights set on something, she just drives towards it until she reaches her goal.”
But Ally has a busy fall awaiting her with her cupcake cart which already has resulted in more than $300 in toys for the patients at Connecticut Children’s. In addition to selling cupcakes in her neighborhood, Ally is taking orders – such as the one from her principal at Lincoln Middle School who ordered 100 for an upcoming conference.
Ally’s generous ways haven’t gone unnoticed either. Her story has garnered significant print and electronic news media coverage and one story produced by NBC30 went national and was aired by dozens of NBC affiliates from as far away as Los Angeles. Ally admits she likes the publicity.
“It’s pretty neat and a win-win for everyone,” the aspiring baker said.
Complex Surgery Helps Newborn Twin Catch Up to Her Brother
A few hours after she was born, Grace Catalano was on her way to Connecticut Children’s Medical Center. Within two days she would have her first surgery.
“So much of it is a blur from that time. I knew I was having twins, but we didn’t know anything might be wrong,” said Jennifer Catalano of Berlin. “I remember the doctors at New Britain General saying that Grace needed special help that only Connecticut Children’s could provide.”
Grace Catalano was born with a rare condition called bladder exstrophy. Her bladder was outside her body at birth. The condition is rare, requiring immediate attention and complex surgery. On average, bladder exstrophy occurs in only one of every thirty thousand births and more frequently in boys than in girls.
“Grace’s surgeon, Dr. Ferrer, called me at the hospital right away and explained her condition and what needed to be done. Hearing from Dr. Ferrer, even before Grace left for Connecticut Children’s, was very comforting. You have to remember, I just came out of a C-Section and couldn’t yet feel my legs. So to know that Dr. Ferrer already knew about Grace and her condition and had a plan – that was really important for my husband and me.”
“We had one young child at home and now newborn twins. We just couldn’t be everywhere at once. So we had to have a lot of faith in the care Grace was getting from Connecticut Children’s. And we did. For example, for the first two weeks after Grace’s surgery, she had nurses’ supervision 24 hours a day. The staff at the hospital was so understanding and thorough about everything,” said Jennifer.
“Because Connecticut Children’s is a center for pediatric research with access to the latest technology, it allows us to perform surgical procedures on children that simply could not be provided at other hospitals in the state,” said Fernando Ferrer, MD, Surgeon-in-Chief at Connecticut Children’s.
Dr. Ferrer added, “Last year close to 10,000 surgical procedures were performed at Connecticut Children’s. For any family with a child needing surgery, it makes perfect sense that their best opportunity for an optimal outcome is to have their child’s surgery performed at a place where everyone involved in the process is totally focused on kids.”
Jennifer continued, “Grace had to have another major operation at 18 months. These are big, scary events for a little girl and the whole family. But the folks at Connecticut Children’s understand that it’s not just about the technology or the medicine, but how we feel and how Grace feels about coming back for a series of important, but sometimes scary, procedures.”
“Grace is now three and a half and mostly caught up to her twin brother, Zack. When she was an infant, she was so much smaller than her brother that most people found it hard to believe they were twins. But she’s doing so much better now and catching up to her brother a little more each day,” continued Jennifer. “Now we only visit Connecticut Children’s twice a year. But early on, we were there so often we started calling it Grace’s Hospital. Grace will have some additional procedures and another surgery when she is five or six, but she’s happy and doing well. Bladder exstrophy is a serious condition, but thanks to all her caregivers at Connecticut Children’s, we expect that Grace will be able to lead a healthy, normal life.”
Teamwork is Key in 8-Year-Old’s Treatment
approach and accessibility of the Craniofacial Team at
Connecticut Children's has been a vital component in
Khyre's ongoing care.
Connecticut Children’s multidisciplinary approach to caring makes a big difference in the lives of patients and families treated by the craniofacial team.
One such patient is 8-year-old Khyre Morris of Simsbury who was born with a bilateral cleft lip and palate. Since birth, Khyre has undergone five surgical procedures. According to his mother Rhashita Brown, the cleft lip and palate was detected in an ultrasound that took place before he was born in July 2003. Despite the overwhelming news, Brown said her worries were immediately eased by the craniofacial team.
“He’s had the same team from the beginning and they’ve always been there for us,” said Brown. “They’re wonderful people who, in addition to the surgeries, have taught Khyre how to eat and how to talk.”
Brown said that she was told that her son was one of the most serious cases that the surgeons had ever seen. Bilateral cleft lip and palate is a birth defect in which there is an opening on both sides of the lip and roof of the mouth. This is caused by incomplete development during early fetal formation.
From four months to six years old, Khyre received most of his nutrition through a feeding tube. During this time, Brown, who works as a mortgage closer, was transferred to Georgia in 2007. While living there, Khyre had to undergo a procedure to reseal an opening in his palate. Following the procedure, Brown said that she missed the attention provided to Khyre by the Connecticut Children’s craniofacial team, and they returned to Connecticut in 2008.
The craniofacial team is led by Charles Castiglione, MD, and Paul Kanev, MD, both medical directors at Connecticut Children’s, along with Virginia McGoey-Radshaw, MEd, CCC-SLP. The team provides multidisciplinary specialty care for children with congenital defects of the head and neck. According to Dr. Castiglione, cleft lip or palate is one of the most common birth defects in the country, affecting every one in every 750 births. The Connecticut Children’s craniofacial team treats about 600 children a year.
“Whenever a parent finds out that their baby has a craniofacial anomaly, it’s devastating news,” said Dr. Castiglione. “As soon as we get the call about a child—whether it’s through an ultrasound or birth—our team takes immediate action to go meet the parents for support and to start the planning.”
Dr. Castiglione added that the craniofacial team includes a wide range of specialists including plastic surgeons, oral & maxillofacial surgeons, neurosurgeons, orthodontists, developmental pediatricians, dentists, otolaryngologists, speech-language pathologists, social workers and nurses. Team members collectively see craniofacial patients twice a month during clinic. Since Connecticut Children’s opened in 1996, some of the team members—including Richard Bevilacqua, DMD, MD, Elene-Lee Ritoli, DMD and Ira Greene, DDS—actually donate their time for the clinic.
“Everyone on the team pitches in because these children are very special to us,” said Kerri Langevin, MSN, APRN, PNP-BC, who serves as the pediatric nurse practitioner for the craniofacial team. “I think all of us get as much from the patients as they get from the team.”
It’s that dedication that prompted Brown to move back to Connecticut and continue Khyre’s care at Connecticut Children’s. “They are so accessible and make you feel that your child is the only child in the world,” Brown said. “I can call them anytime and they help ease the frustrations that we sometimes encounter. Khyre also is seen in cardiology, gastroenterology and neurology and the team has helped us with those appointments.”
Because Khyre’s lips don’t meet, his soft spoken speech isn’t always that clear. “Because of that, I’m his mouthpiece,” Brown said. “But other than that, he is pretty much a normal 8-year-old.”
Today, Khyre is an active third-grader who takes karate lessons and loves playing video games on his X-Box. “My favorite game is ‘Cars 2,’” he said with a wide grin.
For parents whose newborn has a craniofacial anomaly, Brown suggests that they stay positive and that with the support of the craniofacial team, they can be optimistic that everything will work out. She also stressed that parents advocate for their child, especially with school.
Langevin said that the multidisciplinary approach the craniofacial team takes is seamless, especially with the clinics which eliminate the need for parents to bring their child to multiple appointments. This model is rare and is not available at other craniofacial programs in the region. Langevin knows Khyre and his mother well, and said that he has made tremendous progress over the years.
“Khyre was always a happy child, and he has done so well with his self-esteem. I think that has to do with his mother,” Langevin said.