“Evalyn’s Story” is a well-worn book with pages falling off the seams from the countless times Evalyn Carella looked at the pictures documenting her first two months as a newborn in the neonatal intensive care unit. Like every good bedtime story, it has a very happy ending.
As Evalyn flips through the pages, she points out her parents Fred and Mia Carella and her grandparents, Sue and Fred Sr. of the family owned and operated Carella’s Shoes and Carella’s Chocolates and Gifts on Nottingham Way.
“When she first started to talk, she said she wanted to read that book,” said Sue, who keeps it in her living room. Mia had the books made for Evalyn and her family members as a keepsake.
The tiny baby in the incubator pictured throughout the book is now entering kindergarten this fall, and on Sept. 30 will be the survivor ambassador of the Central New Jersey Heart Walk at Arm and Hammer Park in Trenton.
On Christmas Eve 2011, Evalyn was born with tetralogy of fallot with absent pulmonary valve, a rare congenital heart defect. It was a diagnosis first-time expecting parents Mia and Fred couldn’t have imagined when they went in for a routine ultrasound half-way through the pregnancy.
“It was the same day we found out she was a girl,” Mia said. “It was a thorough ultrasound, and she noticed something was different.”
Later in the pregnancy when Evalyn’s heart was large enough, she was diagnosed with tetralogy of fallot, and Mia and Fred were faced with more decisions than naming their baby and picking out paint colors for the nursery. They toured hospitals and neonatal intensive care units, visited pediatric cardiologists and had many ultrasounds.
“The good part was we got to see her every few weeks while she was still growing,” Mia said.
Evalyn was born at Cooper University Hospital in Camden weighing only 4 lbs. Before Mia had a chance to hold her, she was whisked away to the NICU and put on a ventilator. Because of her condition, Evalyn was transferred to Nemours Alfred I. duPont Hospital for Children in Wilmington, Del. Fred went with Evalyn while Mia recovered at Cooper.
“It was heart breaking for me as a mother. For my son to be at duPont and Mia at Cooper, being split up,” Sue said. She and her husband joined their son and spent Christmas Eve night at the hospital getting as much sleep as they could.
Mia was released a day early on Christmas morning to be with her husband and newborn baby, but it would be five days until she could finally hold Evalyn.
Every day for over two months, Fred and Mia would drive from their home in Yardley, Pennsylvania, to see Evalyn in the NICU. Most of the time Evalyn was in an incubator, but her parents were able to hold her for five hours a day and used skin-to-skin contact to keep her warm and bond.
“It was so hard, the whole thing was surreal,” Mia said. “We were first-time parents so we didn’t really know what to expect and then being in a hospital so long, it almost felt like she wasn’t really ours, she belonged to the nurses and the doctors.”
When Evalyn was 7 weeks old and weighed only 7 pounds, she underwent her first open-heart surgery to close the hole in her heart and repair the narrow pulmonary artery.
Except for her big brown eyes, it’s impossible to tell Evalyn was once the fragile baby in the incubator with a bandage over her heart nearly the size of her torso. She’s active, friendly and constantly smiling.
She points to one of the last photos in her book and exclaims, “Mommy happy!”
It’s a photo of Mia and Fred erasing Evalyn’s name from the NICU dry erase board, culminating the hospital stay and celebrating taking their baby home for the first time.
Although the book ends with Evalyn going home, her story doesn’t stop there. They left the hospital knowing Evalyn would eventually need more surgeries and at 6-months old, a cardiac catheterization revealed she would need another open-heart surgery.
“We thought she was doing really well at the time, but when they actually measured all the pressures, that’s when they said it was too much pressure on her little heart, so we were very sad to hear that,” Mia said. “Even though we knew it was coming we didn’t think it would be so soon.”
Evalyn was baptized that July, and in August underwent her second open-heart surgery to put in a pulmonary valve conduit and a replacement valve. The following August, another catheterization showed the valve started to shrink and calcify causing pressure to build in her heart so the conduit needed to be replaced, Mia said.
“We were so upset with the idea of a third open heart surgery before age 2,” Mia said. “There are so many risks to open heart surgery, especially on a tiny little baby.”
They sought out second and third opinions and at Boston Children’s Hospital the surgeon agreed that intervention was necessary, but they came up with a plan that could delay open-heart surgery for at least another year.
“They had a brilliant idea that instead of doing another open-heart surgery, they could do a catheterization and put a stent in that conduit where it was shrunken and open it up and let her grow bigger and stronger before the next surgery,” Mia explained.
A stent is a small mesh tube used to treat narrow or damaged arteries, and in December 2012, Evalyn received the stent that was supposed to delay surgery at least 18 to 20 months. The procedure was more than successful, as it’s been 41 months, Mia said, and Evalyn hasn’t had another surgery since.
“As long as the stent is holding and keeping the pressures in her heart down, then we’re good,” Mia said, “but every time it comes time for a checkup appointment I get scared because we’ve already outlasted the original timeline, and I know it’s going to be one of these visits.”
Evalyn is enjoying a normal childhood with no physical restrictions. She’s allowed to run and play just like the other kids, and last year attended pre-kindergarten at the Goddard School in Newtown, Pennsylvania.
“She fit in really well,” Mia said. “Her biggest strength is her social skills. She is the friendliest, warmest person that everybody is just drawn to her.”
When Evalyn visits her grandmother at work in Mercerville, she brightens up the store.
“She just runs in with her arms open,” Sue said. “She makes everybody smile.”
The Carellas announced Evalyn’s birth with large signs in their storefront windows.
“When we were going through everything, our customers always came in and asked how she was,” Sue said, “After 70 years [in business] you have a lot of people who know you and your family.”
To this day, Sue still gets asked about her granddaughter.
This year, Evalyn will serve as survivor ambassador for the Central New Jersey Heart Walk. It is her fourth year participating, and she, her family and the Carellas’ friends will walk together as Team Evalyn.
“I thought it would be a great way to get involved and give back and raise awareness of congenital heart defects, because I did not know until this happened to us, but it’s the No. 1 birth defect amongst babies in our country,” Mia said. “One in 100 babies are born with a congenital heart defect.”
Last year, Mia delivered their second child, Weston, just before the Heart Walk, but she and Fred were able to stop by before the walk to cheer Evalyn on. Weston was also born with a congenital heart defect, but a less severe case with no intervention necessary at this time.
The Carellas will open up the Heart Walk by telling their story, and Evalyn will cut the ribbon at the starting line.
“What better person to honor than a 5-year-old survivor?” regional Heart Walk director Patty Harvey asked.
“We call her our heart warrior,” Sue said.
The 2016 Central New Jersey Heart Walk will take place Friday, Sept. 30 at Arm and Hammer Park in Trenton at 5:30 p.m. For more information, go online to centralnjheartwalk.org. To join Team Evalyn or make a donation to the American Heart Association in support of Team Evalyn, visit heartwalk.kintera.org/centralnewjersey/teamevalyn2016.