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Finding light in darkness

Nonprofit supports families facing life-threatening fetal diagnoses

Courtesy of Luke O’Brien Creative
Alex and Jodi Laughlin are the co-founders of Noelle’s Light, a local nonprofit that supports families facing life-threatening fetal or congenital diagnoses.

Noelle’s Light, a local nonprofit that supports families facing life-threatening fetal or congenital diagnoses, held its third annual golf classic and patio party at Riverton Country Club on May 20.

Proceeds from the event will support emotional and financial support programs that serve families who are either actively pregnant with a fetal diagnosis; have a new baby in the NICU under the age of 12 months; or have experienced miscarriage, stillbirth or infant loss due to a fetal or congenital condition.

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“I think we’re just very excited that we’ve grown the organization to this point,” said Alex Laughlin, co-founder and executive director of Noelle’s Light. “It started with tragedy and an overwhelming feeling of love and knowing that we needed to do something with that love. And at that time, we didn’t know what that was going to be.”

Noelle Philomena Laughlin, daughter of Alex and his wife Jodi, the co-founder of Noelle’s Light, was born and died on Dec. 13, 2016, at 30 weeks. The Laughlins were 20 weeks pregnant with their daughter when doctors discovered abnormally high levels of fluid surrounding the baby’s heart.

From then on, Jodi and Alex were at the doctors once, twice, sometimes three times a week, shuffling between specialists and varying opinions, experiences they shared on the nonprofit’s website.

At 24 weeks, they officially got a diagnosis of Hydrops Fetalis, a rare fetal condition with very poor survival rates. They were seen at Children’s Hospital of Philadelphia (CHOP), where their care would remain until they met their baby girl. The Laughlins spent the next six weeks traveling to and from CHOP from their home in New Jersey.

Along the way, Jodi underwent four in-utero procedures to try to drain the fluid that was compressing Noelle’s heart and lungs – two of which required overnight stays.

Noelle’s passing left Jodi and Alex with a sadness that they didn’t know existed. But her life also gave them a love they never knew was possible, the couple said, and has inspired them to light a path of hope and support for other families, to remind them that they are not alone and that, despite unimaginable darkness, the light will not be overcome.

“We left the hospital in 2016 knowing that we were going to honor Noelle in some way, and we spent several months just figuring out what that was while we were still deeply grieving our daughter,” Alex recalled.

“We landed on this idea for Noelle’s Light to support families going through a fetal or congenital diagnosis, and since that idea was born, fast forward to now, we’ve helped 300 families across our different programs.”

While Noelle’s Light is based in New Jersey, it has served families across the U.S. and seven countries. Their different programs provide financial, emotional and resource support to families; as of March 2024, they’ve supported 265 of them.

Financial relief grants provided by Noelle’s Light help families cover costs such as travel expenses, rent and mortgage payments, utility bills, child care and funeral expenses. As of March this year, the nonprofit has delivered $275,000-plus in financial support.

Noelle’s Light also offers resources that help support families in all aspects of their journey, including a mentorship program, the Noelle’s Light IVF grant, family relief grants and institutional partner funds. For more information on any of them, or to donate, visit www.noelleslight.org.

“This year, we had 200 people and we raised over $100,000,” Alex said of the 2024 Noelle’s Light golf classic and patio party. “This year, I think, the whole event was really elevated from prior years, so we’re now tasked with needing to improve it even more and grow it even more for next year and keep it fresh and exciting for everybody that goes to it every year. We’re excited for that.”

“This year especially, and over the past 12 months and in building our local community and talking to people and becoming more comfortable talking to people about our story and what we’re doing … I find a lot of times when I share our story, people can often relate to loss, to tragedy, to grief, and connecting on that level with someone really has been powerful,” Jodi pointed out.

“Noelle’s Light – yes it’s about helping families with a congenital diagnosis, but it’s also about being there for someone when they need support, and I think that that’s been very powerful over the last year, people knowing that we are there for them in their time of darkness.”

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