Grieving Hoboken Parents Seek ‘New Normal’ After Infant’s Death

HOBOKEN, NJ — Ask Hoboken resident Stephanie Cohen who she is, and you’ll get three succinct replies: “I am a heart mom. I am a first-time mom. I am a new heart angel mom.”

That’s how Cohen has chosen to define herself after she and her husband Matt lost their infant daughter, Madison, to a congenital heart defect called Hypoplastic Right Heart Syndrome.

After doctors diagnosed Madison with a heart condition at his mother’s 20-week ultrasound, the Cohen’s world was changed forever, the grieving mother wrote in a recent post on LittleHobokenBlog.com.

The infant – whose name is derived from Matthew or “gift of God,” and Matilda, meaning “strong fighter,” was born on June 17 and immediately taken to the NICU.

She never got a chance to leave, Cohen wrote.

Just weeks after entering the world, Madison had endured a catheter procedure, an open-heart surgery and a battery of other PICC lines, IVs, arterial lines, echocardiograms, EKGs and blood transfusions. And then the worst news of all arrived… she needed a heart transplant, doctors said.

“I watched my own daughter endure what seemed to be endless pokes and prods while fighting for her life,” the young mother recalled. “I sat in the NICU every day and watched Madison undergo more in those two and a half months than most people will ever experience in their lifetime.”

When Matt and Stephanie – a manager at a Hoboken fitness studio - made their daughter’s struggle public as part of an online campaign, the community responded with an outpouring of financial and spiritual support, making Madison’s struggle their own and raising almost $60,000 to help pay for medical costs.

• See related article: Miracle For Madison: Hoboken Infant Needs Heart Transplant

But sadly – despite an entire community’s collective goodwill and hundreds of shares on social media – Madison didn’t get her new heart in time and passed away on Sept. 8.

Cohen shared the agonizing pain of watching her child languish on an organ donor list in her blog post:

“Time and time again I watched as others babies coded in the NICU. I sat there crying in disbelief, so angry at the world, just hoping and praying that would never be us. This then became my reality and Madison was gone so quickly. I held my baby's cold, heavy, and tired body as I said goodbye.”

Although Madison's life was short, she “made an everlasting impact” on all the people she met, Cohen wrote.

“Thank you to everyone for your thoughts, prayers, and donations over the past few months and for being a part of Madison's heart journey,” Cohen wrote. “Madison felt the love and support that you all gave and continued fighting for all of us.”

THE ‘NEW NORMAL’

The idea of living a “normal” life and experiencing the joy of a first-time mom are gone, Cohen wrote after her daughter’s death.

But now she and her husband are trying to find their “new normal,” and in doing so, turn their pain and suffering into something positive.

“Every day continues to be a struggle but I get up and keep moving forward,” Cohen said. “I find myself grasping at strings trying to do everything and anything to keep Madison's memory alive... That’s why I am now actively a part of many heart mom groups, family support, the Congenital Heart Disease (CHD) community, grieving mother groups online and partnering with various heart organizations. I’m doing, and will continue to do, everything in my power to help others going through this same experience.”

This phoenix-esque, rise-from-the-ashes attitude has manifested in the couple’s ongoing effort to raise awareness about CHD.

This past fall they created a “Madison Strong Team,” had t-shirts and signs made and participated in the New York Congenital Heart Walk, raising money and awareness for CHD. They finished as both one of the top 10 teams and top 10 participants for fundraising, Cohen wrote.

But it didn’t stop there. The couple just hosted a “Ride for Madison and CHD Awareness” class at Cyclebar, and will co-chair Hayden's Heart Foundation's “Heart Strong” Golf Tournament in June.

Recently, the Cohen’s story reached Hoboken Mayor Dawn Zimmer, who praised the couple’s desire to help others in the wake of their personal tragedy during her state of the city address on Monday.

“Rather than let tragedy overcome them, they made it their mission to raise awareness and funds for congenital heart defect through Hayden’s Heart Foundation to support the children and adults now battling with CHD the way their daughter Madison did,” Zimmer said. “Stephanie and Matt’s mission to keep Madison’s memory alive serves as an inspiration to us all.”

Photos: GoFundMe

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