Couple collects Crayola products for CHOP in memory of infant son
By Bernadette Suski-Harding, Special Writer
One day, Gina D’Angeli stood outside her daughter’s playroom and watched as Ella, 2, removed Crayola crayons from the box and named the colors.
"This is red," Ella said. "This is blue.""It got me thinking about what Lucas’ favorite color would have been. It was that simple," Ms. D’Angeli says.
Lucas, Ms. D’Angeli’s first-born child, died on Oct. 28, 2010, just 16 days after his birth. To honor his memory, Ms. D’Angeli and her boyfriend, Ben Christensen, who is Lucas’s father, started Crayola Love for Lucas.
To date, Ms. D’Angeli and Mr. Christensen, who live in Hamilton, Have collected more than 1,000 pieces of new Crayola supplies — everything from crayons and markers to coloring books and construction paper — which they will donate to Children’s Hospital of Philadelphia (CHOP), where Lucas was born, and spent the first week of his life, and where he died not long after.
During the week that Lucas was at CHOP, Ms. D’Angeli watched as child life specialists made the hospital stays of older children a little brighter.
"Some children aren’t even allowed to leave their rooms," Ms. D’Angeli says. "The child life specialists go in and support them through art, and let them express themselves."
A startling diagnosis
Ms. D’Angeli learned at week 22 of her pregnancy that Lucas had multiple heart defects: ventricular septal defect, transposition of the greater arteries, and a hole in his heart. She knew it was bad when the ultrasound technician left the room and returned with a doctor. They suggested terminating the pregnancy, which would have involved stopping Lucas’ heart, followed by delivery."It was very frightening," she says. "I couldn’t sleep."
Her mother and Mr. Christensen learned about CHOP, where they went for a second opinion. "It was like walking into a paradise of comfort," Ms. D’Angeli says. "I went from shaking the entire time in the private waiting room, to understanding everything that was going on."
A team of five specialists — Lucas’s medical team — met with Ms. D’Angeli and Mr. Christensen, and answered all their questions.
After that, Ms. D’Angeli says, "every visit felt not like I was going to the doctor, but like I was going to visit family."
Lucas’ medical team made plans to deliver Lucas at CHOP, so he could receive heart surgery the next day.
When he was born, a week early after 33 hours of induced labor, Ms. D’Angeli didn’t get to hold Lucas, but did see him before he was moved to the NICU.
"I remember thinking, ‘How is he sick?’ He was beautiful and perfect. No incubator, no wires coming out of him. He put his hand up, and I felt like I met my son for the first time."
The next day, a team of surgeons implanted a stent in her son’s heart, and for the six days following, Lucas recuperated at the hospital, his parents by this side. The first of a lifetime’s worth of "maintenance" surgeries was scheduled for three months later.
Lucas’ nurses nicknamed him Superman. "Two days after his surgery, he ripped his own oxygen mask out of his nose and started breathing on his own," Ms. D’Angeli says. "It was a moment I will never forget."
From good to worse
Lucas was home for a week when Ms. D’Angeli noticed he was sweating.
A call to Lucas’s medical team at CHOP was followed quickly by a second call, this time to 911. The police officer who responded, alarmed by Lucas’s condition, didn’t wait for the ambulance and immediately took him and his mother to the hospital. Mr. Christensen followed in the family car.
By Ms. D’Angeli’s estimate, the ER doctor spent three minutes examining Lucas, diagnosed a low-grade fever. Ms. D’Angeli recalls asking, "Are you sure? Are you certain?"
"When you spend a week in the hospital with your baby hooked to monitors, you learn how to read the numbers," she says.
The doctor said he was certain, and Lucas was discharged. (Ms. D’Angeli has asked that the hospital not be identified.)
While waiting in the parking lot for Mr. Christensen to arrive, Lucas nestled in her arms, Ms. D’Angeli was stunned when an ambulance from CHOP pulled in. The nurse who exited the vehicle asked Ms. D’Angeli if she was Lucas’s mother.
Still in shock, Ms. D’Angeli replied yes and asked why.
"We’re Lucas’s medical team," the nurse said. "You’re part of the CHOP family, and we’re here to take care of you."
That’s when things got crazy, Ms. D’Angeli recalled. "The nurse looked down at Lucas, and immediately took him from me and ran into the ER. He’d had a stroke in my arms," Ms. D’Angeli says.
A fighter
The CHOP team took jurisdiction in the ER, and once Lucas was stabilized, transported him to Philadelphia.
Ms. D’Angeli’s sister, who lives in Philadelphia, was already at CHOP when Ms. D’Angeli arrived.
"I just knew, by her face I knew," she says. "He needed blood transfusions. The amount of people who were trying to save his life that night — you could see that this was personal to them." Over the next 24 hours, "every single person got called in. Any nurse or social worker who’d ever worked with him showed up to see him, at 3, 4 and 5 a.m.," Ms. D’Angeli says.
"The next day, they did a CAT scan," she continues. "There was such severe bleeding in his brain, he was brain damaged. Their recommendation to us was to let our son go."
Still, Lucas clung to life. A doctor called him a fighter.
It wasn’t until she and Mr. Christensen were alone in the room with Lucas, and Mr. Christensen said to Lucas, "I love you so much that I want to let you go," that Lucas passed away.
A half minute had elapsed.
"I think of it every day," Ms. D’Angeli says. "I believe he knows we were there."Later, an autopsy revealed that an undetected infection had caused a stroke, which led to bleeding and swelling.
Honoring Lucas’s Memory
At Lucas’ funeral, Ms. D’Angeli delivered the eulogy.
"We are still here," she said to a packed house. "We still have the opportunity to live right and love right."
It’s a credo they follow every day. Ms. D’Angeli is back in school, on scholarship at Rider University, where she’s working toward two degrees, one in early childhood education, and one in psychology with a minor in special education.
Mr. Christensen began his own business, B&B Lightning Protection, with a loan from a friend. The loan was repaid within eight months, and Mr. Christensen’s business, which is headquartered in New Jersey, has offices in two additional states (Maryland and Delaware), and provides services across seven states.
And their daughter, Ella, born two years after Lucas’ death, is their rainbow baby. "We call her that because she came after a storm," Ms. D’Angeli says. "We’ll never forget the storm, but Ella, she gave us our beauty back."
She pauses a moment, then says, "We could’ve fallen down. But if we had, we might never have gotten back up."
A Frenzy of Donations
To have collected more than 1,000 pieces of Crayola supplies already — from across the U.S. and as far away as England — with zero publicity, comes as something of a surprise to Ms. D’Angeli.She attributes it to word of mouth. Both she and Mr. Christensen grew up in Princeton — she in Griggs Farm and he right behind her.
"We knew each other our whole lives," Ms. D’Angeli says, but it wasn’t until she left college in Virginia after a year to return home that they began dating.
"It was love at second sight," she says.
"We’ve been through a lot together," says Ms. D’Angeli, "and it hasn’t always been easy, but Ben knows when I’m having a bad day, and he lets me have the bad day. He doesn’t take it personally. He’s given me the most amazing support.
"Nine out of 10 couples don’t stay together when they lose a child," she says. "We are not married. Think of how easy it would have been to part."
Anyone wishing to donate new, unused Crayola items to Crayola Love For Lucas, can send donations to: B&B Lightning Protection, 39 Samdin Blvd., Hamilton, NJ 08610.
Ms. D’Angeli and Mr. Christensen will make at least two deliveries to CHOP, the first on Friday, Oct. 10, and the second on Friday, Nov. 14.
CHOP has asked for Crayola products, but don’t limit yourself to crayons. So far, Ms. D’Angeli and Mr. Christensen have collected colored pencils, modeling clay, twistable pencils, markers, finger paints, paper, coloring books (regular and oversized), painting supplies, glitter glue, gel markers, and dry erase crayons and markers.