WESTFIELD, NJ — “On every ultrasound we had throughout the pregnancy, my son’s face was always hidden by his hands,” Francine Magrone wrote on her website, WalkinSunshineCharity.org. “The technicians would tease me and say he was camera shy.”
Francine was 30 weeks pregnant when she noticed that her baby’s movements had slowed.
“Well into the third trimester, baby Magrone was extremely active, continuously moving, especially at night,” she wrote. The decrease in movement had her worried.
“I kept telling myself ‘calm down Francine, you are driving yourself crazy.’”
But after a day of seeing her own patients as a family nurse practitioner, a trip up to the labor and delivery unit in the hospital where Francine worked confirmed her worst fears.
“I looked over at my friend who sat there motionless with tears in her eyes and muttered through my own tears, ‘Tell me this is not happening right now, please,’” wrote Francine, who for the first time was able to see her son’s face in the stillness of an ultrasound that confirmed that there was no heartbeat.
After 24 hours of labor, Lou and Francine Magrone welcomed their baby boy, Joseph Louis Magrone, on Jan. 6, 2017. The very same day that they had to say goodbye.
As other families celebrated the arrival of their babies with pink or blue symbols on the postpartum recovery room doors, the Magrone’s private room simply had a tear drop to symbolize the loss of their baby boy.
“It was torture to just sit there,” Lou Magrone said. “What do you say to your wife?”
During Francine’s delivery and in the hours that followed, Lou said that he paced the hospital hallways trying to figure out what to do next. It’s his nature to be the problem-solver, and he immediately tried to tackle the logistics, he said.
Despite genuine efforts and support from the hospital staff at Overlook Medical Center, he wasn’t able to find answers to all of his questions and online resources didn’t offer the specific details he needed in order to make arrangements for his son.
Lou turned to his parish at St. Helen’s for guidance, and while it was helpful, he still wished that there was a single place where he could find out what to do next.
"I had a problem — I had a dead child and I needed to figure out how to make this as painless as possible,” he said. "I needed to figure out how to get my son to CHOP [Children's Hospital of Philadelphia] because I needed an autopsy.”
According to Lou Magrone, in the days that followed, he was tasked with arranging a courier service for an autopsy, managing decisions around whether to bury or cremate his son, weighing the financial costs of a child-sized casket or urn, organizing Joseph’s internment at the infant section at Fairview Cemetery and even considering the additional purchase of two more plots so that Lou and Francine could one day be laid to rest near their baby boy.
“There was no clear blueprint," he said. "My wife and I had to think way too much and do a lot of leg work while she was waiting to deliver and in the week that followed."
It’s this experience that motivated the Magrones to develop Walk in Sunshine, a 501c(3) organization dedicated to providing immediate financial assistance to families who have lost a young child in the New Jersey area while providing comprehensive online resources for families grieving the loss of a child.
“This is for parents dealing with the financial and logistical components of child loss,” he said, adding that the resources are not only focused around stillbirth. “Whether it’s a stillbirth or the death of a sick child or an unexpected death, we just want to let people know we are out there and we want to help in any way possible.”
According to the Magrones, their goal is to open up a dialogue on a topic that is not often discussed. Currently their site has 160 unique links along with a memory wall to remember the children that have passed.
The couple has plans to refine the site further to include regular video content, grief support information and even a community thread so that families can connect with others who have experienced the loss of a child.
The Magrones also hope to champion for better research in the arena of stillbirth and infant loss. After 10 weeks of waiting for autopsy results, the Magrones were told that the cause of death for their baby boy was inconclusive. They later learned that, at the time of Joseph's death, there were only two perinatal pathologists in the entire state of New Jersey.
"Infant loss is still a part of our culture that's not talked about and the research dollars never end up going there," said Lou, who would like to collaborate to help advance data collection about these babies, which he says is currently not happening at the state level.
Walk in Sunshine has also pledged to donate $1,000 for funeral costs to help with the financial burdens of burial to any Westfield family who has suffered the loss of a child. During his experience, Lou Magrone said that he felt lucky that they could burden the costs of Joseph's arrangements, but it was definitely stressful watching the numbers add up. The couple plans to expand this throughout Union County and within areas where there may be a greater demand for financial support.
"I worried about those things that take some time and energy, which I didn't really have at that point," he said. "Not knowing the total and all of the different options you can put on a stone or what's the difference in cost between a casket versus and urn, once again, it's a lot to think about."
In an effort to drive awareness of the online destination, Lou hopes to collaborate with hospitals, religious institutions and other facilities where a family may seek information on child loss.
“I want families to receive our information right away versus having to navigate the road that we have already paved for them,” he said.
The Magrones, who have since welcomed a second son, Nicholas, said they moved to Westfield without knowing anyone but that they were excited to connect with young parents and the community after the arrival of their first baby. Instead, their experience left them feeling isolated.
“We came home to our empty house in Westfield, into a home that we were so proud of,” said Lou Magrone. “I knew there were other people and I knew we weren’t alone, but no body was connecting us. Hopefully this will allow families in Westfield who have lost a child to find us.”
If you are interested in making a donation or learning more about Walk in Sunshine, visit the organization's website at WalkinSunshineCharity.org or on Facebook at https://facebook.com/WalkInSunshineCharity/.